Seeking Sunshine

Run Between the Raindrops

2011-03-10T21:59:00.002-05:00

When I was little, on rainy days my Mom would tell me to "run between the raindrops" so I wouldn't get wet. She would remind me every time it rained, and when we got to the car, or when I arrived home, she would always ask me "Did you run between the raindrops?" and "Did you get wet?" I always proudly beamed at my Mom, declaring that I did it, I ran between the raindrops and I didn't get wet. Even as an adult, if I was visiting my mom and leaving in the rain, she would smile and say "Don't forget to run between the raindrops" and I would reply "Of course."

It has been a very rainy week here. During the first bit of rain last week, I stood at the door, preparing to take Micah outside. As I bundled Micah up in his jacket and pulled the hood over his head, I heard my mom's voice echo in my head, chastising me for not taking an umbrella with me. I found myself smiling, and even said out loud, "Don't worry, Mom, I'll run between the raindrops." I stopped cold for a second, frozen, tears welling up in my eyes again, and then I turned to Micah, took his hand, and said, "Come on, Micah, let's run between the raindrops."

I was sure my Mom was grinning down at us as we ran to the car and I buckled Micah into his car seat. I sat down in the front seat, crying (and soaking wet), and I said out loud, "We did it, Mom, we ran between the rain drops and we didn't get wet."

Running between the raindrops is a great metaphor for life...when you are little, you just BELIEVE you have the power to avoid getting wet. Even when you sit there, hair glued to your head and beads of water dripping into your eyes and down your nose, you can still beam and insist that you avoided the raindrops and stayed dry. As we get older, we realize that rain is unavoidable...as is getting wet. We can wistfully remember a time when we believed we could avoid the raindrops if we just tried, but we are all too aware that it was never possible to actually run between the raindrops.

This year, I've learned all too well about raindrops...and life's rainshowers have me sitting here, hair glued to my head, clothing soaked, shivering, and beads of water sliding down my face. But this week, I remembered that even as I sit here, soaking wet, it is easy to WANT to believe we can run through the raindrops if we just try. I think that is what I've been doing the past few months...trying to figure out how to run through the raindrops...or at least learn to grin with pride after getting soaked by life.

Things have been hard since my Mom died. I think of her every day, many times a day, and not a day passes that I don't shed tears. A friend of mine renamed her blog "Impersonating Normal" after she lost her son...and I understand that sentiment. I wake up each day, I focus on all the good in my life, and I try to be normal again, even when I don't exactly feel normal. I spend time with my children, I'm working on rebuilding my business, I go out with my friends, and I am trying to create balance in my life and find me again. But I also feel as if I am walking around with this big gaping hole in my chest. I always think that anyone who looks at me must be able to see what has happened to me - as if I have this huge shocking open wound, exposed and bleeding, visible for the world to see.

Some days are better than others. I definitely have more smiles than tears in my life, but it is the little things I find challenging. I miss my mom terribly when I am at the yarn store, trying to decide which yarn to purchase for a project. I find myself reaching for the phone to call her and tell her about the kids' doctors appointments, or the funny things they say and do. I miss my sounding board...my life is much more quiet and insular without my mother in my life. I feel disconnected to the "information train" - I have no idea what is going on anymore with our extended family and friends. My mother always had good tidbits of gossip for me, and I miss the phone ringing all day with random little stories and updates. I wish my Mom could see Micah laughing about the tickle bugs in the couch, or how he loves using FaceTime (she would have thought that was so cool), or Maya's quirky little crawl and how she is pulling up on everything. I miss Thursday night date night, and knowing that she is there to run backup and help out when I realize that DH is going out of town for the weekend and I have no one who can help me take two kids to swim class while he is gone.

I do so many things each day to keep my Mom close. I find myself wearing her perfume - her scent lingering near me feels like a big hug sometimes...as if she has just left my presence. I keep a picture of her in the kitchen, so Micah and Maya can see "Mimi" sitting with them while they eat meals. I teach Micah how to use "Mimi's trick" to put on his jacket, and we laugh about the ticklebugs in Mimi's couch.

There really is so much joy and goodness in my life...I just still wish my mother was here to share in it with me. I'm certain that feeling will never leave me, and I hear the gaping wound heals over and becomes more like a scar that fades with time. I guess only time will tell. In the meantime, I'm going to keep trying to run between the raindrops.

As you can tell, it has been a few months since I have written anything on this blog. I just...well, I just haven't had the heart to write. All these years, I wrote for me...but for 3 years, I knew my mother was reading my blog, sharing in our journey. Somehow, writing words that I know my mother will never read...hurts. Along the way, my blogging and her battle with cancer became entangled, and I associate sitting down to write with those awful days and nights. I think it has been a struggle for me to come back to this computer and face those feelings, and knowing that writing words she will never read is moving on, moving forward again. My life stood still for six months, and the past three have felt like....Oz. I feel as if a tornado came roaring down on me, picked up my house and transported me to some sort of alternate reality Emerald City, surrounded by munchkins. I keep thinking that somewhere else, another version of me must be living my life as it was supposed to be, with my mother healthy and strong and ever-present. If only I could click my heels together three times....

I've been jotting down little things, and maybe now that I finally faced my "demons" and wrote again, I can go back and complete all those updates on our past few months. Micah is now almost 27 months old, and Maya is 8 1/2 months. They are growing up so quickly!

Today, Micah left for preschool with DH in the torrential downpour. I gave Micah a big hug and kiss, and told him to run between the raindrops. He flashed me a huge grin, and said "Run raindrops, Mommy" and waved at me. I felt my heart squeezing in my chest as I saw my little man stomping through the water puddles on his way to the car, grinning from ear to ear. I hope he spends his life believing that he can run through the raindrops.

Eulogies

2010-12-01T23:51:00.003-05:00

Mom's funeral was held on Tuesday, November 30, 2010 at 12:00 Noon. Below are the eulogies delivered during the service:

Childhood friend:

There is a song we learned many years ago at Girl Scout Camp…”Make New Friends, But Keep The Old. Some are Silver, The Others Gold”. I am very touched that D wanted me to say a few words about the OLD.

Some people are lucky enough to have , what I call, “Forever Friends”. D was one of mine. And it all started back in Scranton, PA. Growing up there in the 50’s and 60’s was a unique experience, but no one realized it at the time. We thought everyone had the childhood we had.But then we grew up, moved away, started our own lives, and made new friends.

It would always amaze people when we told them how we lived as a pack – not a clique – but a pack who did everything together…from walking to school taking up the whole sidewalk, to Hebrew school right through to Confirmation, to Saturday afternoon movies where we took up a whole row saving seats for each other, to Sunday clubs at the JCC, to summer camp, to high school reunions, to each other’s weddings. There were never 2 or 3 of us; it was always a pack.

About 5 years ago when we were all turning 60, and life became a little less hectic, income a little more disposable, we decided to celebrate with a Birthday Bash Vacation. Seven of our group were able to make it, so off to Cancun we went, dubbed by the staff there as The Seven Lovely Ladies.We caught up, rekindled, vowed to keep it going. And we have.

Now there is one less member of our pack. One of Our Lovely Ladies is gone. There is a great void; an emptiness that can never be filled. But D has shown the rest of us how to meet the end of our days with such grace and dignity and bravery and, most of all, surrounded by so much love. D has had a profound impact on each and every one of us here today and it all started way back when in Scranton, PA where we learned the true meaning of everlasting friendship. And now, we are Six Lovely Ladies.

Co-Worker:

I am so very honored that D asked me to speak today. I met D when she began her employment at the library where I was a librarian. Eventually she became a supervisor of 12 staff and numerous student aides and I became her supervisor as the Head Librarian. Over the next 25 years, I came to know D from many perspectives. I would like to talk about just 3 of those today.

The first perspective is one we all know—which is—with D you get M. You can’t avoid it! It is not a coincidence that both of them wound up working at the same place of employment. I can only imagine that when the children were old enough to be thoroughly engaged in school and friends, M began to “shop” for a job, “shop” is the operative word here for those who know M well. Yes, M began to “shop” for a job, where he could keep an eye on D, OR was it the other way around—where D could keep an eye on M?

There were more times than I can count when D was in my office to go over a process, a problem, or an update of importance in the daily affairs of the library. More often than not, my phone would ring, and I would answer. “Hi M.” M would ask, “Is the boss there?” I’d hand the phone to D who was clearly agitated-- “What the heck do you want? [But she didn’t say ‘heck.’] She said, “What the heck do you want? Don’t you have a job?” M most likely wanted to know if she had all the ingredients for what they would be cooking. Should he go buy that shirt he wanted? What else did she want him to pick up from Costco? As M received his instructions from D, D’s eyes widened and rolled in half circles, she shifted impatiently from one foot to the other, and ended with, “Is that it?! GOODBYE M!” And she hung up. And as though she had to explain further how she felt about his intrusion, she slurred her words in a huff of irritation, “Such a pain in the ….” In the pause that followed, I felt like an intruder during their private moments of marital bliss.

While D played the perturbed wife when M did the dialing, she also knew M’s strengths. One day shortly before Christmas, D stopped by to chat. She asked if my son got everything on his Christmas List. I replied proudly that yes indeed he had, all but one gift. Being married to the extreme shopper, she found that concerning and asked what Santa couldn’t find. I told her and within seconds she was on the phone to M with the latest instructions, “M, listen to me, N asked Santa for a stuffed Cat in the Hat, and Santa couldn’t find it. Can you pick one up today?” They said goodbye and two and a half hours later, M stopped by with the last of Santa’s gifts. D couldn’t be more proud. They were a team! D and M were a team!

D’s ability to solve problems applied to her work in the library, as well. D’s attitude towards work was always focused on getting things done. Many considered her to be the “go to” person. She kept a catalog of supplies, resource people, and furniture in her head so that at any given time, she could find what you needed or knew where to get it. She was dependable. She often came early or left late. She developed the scheduling for her staff to make sure the desks were always covered even if that meant staying later to cover for someone else.

She was very detail oriented and enjoyed working on the database system that controls our collection. I was impressed with the knowledge she developed over the years about the record structure and the complex relationships of an integrated catalog. She liked to work on projects to clean up the catalog from a circulation perspective. She encouraged her staff to bring problems to her. She was a good listener for those employees who consulted with her. She thought carefully about appropriate solutions. It can be said that D gave 100 percent effort to provide service in our very busy library over the 25 years she worked there. I immensely enjoyed working with D.

Not only was D knowledgeable about how the library functioned and knew how to get the work done, she brought her thoughtfulness and caring to work and made family out of co-workers. She organized and participated in showers and birthday parties. She knit sweaters or blankets for expectant moms and dads. She cooked from her own library of recipes that became signature at library parties. I know so many of you that worked in the library during those 25 years who invited D to your family functions. D always looked forward to attending and shared your special joys and even your sorrows.

Lastly, I wanted to mention how D impacted my life as a human being. While I was her boss, she was my mentor. She taught me so much but perhaps her greatest gift was to show me how to be a caretaker. Long before my mom and dad became ill, I watched how D cared for her own mom. With responsibility and love, D did everything for her mom. She moved her mom from Scranton. She set her up in appropriate living facilities. She took her mom to medical appointments, bought her clothes, medicine and, yes, Breyer’s Chocolate ice cream. She was the ultimate devoted daughter not only for her mother but for M’s mother too. In an odd turn of events, her mother was placed in the room next to my mom’s in the Nursing Home for the last 2 weeks of her mom’s life. I stopped in next door to see how she was doing only to see D lying on the bed, her arms wrapped around her mom, gently comforting her mother in the last hours of her life. It was poignant and touching—it was a moment of beauty. D’s gift of love and caring was given back to her. During her illness, her family, visitors, and guestbook friends formed a support system of inconceivable magnitude. I can only imagine D’s satisfaction on this very day--that she was so loved and cared for by all those lives she touched. I am grateful that she touched mine and was proud to call D my dear friend.

Neighbor:

As all of us here feel, it is with much sadness that I am before you to say a few words about our beloved D.

A and I met D, M and T soon after we moved to our neighborhood about 34 years ago. Soon thereafter, J was born and then our daughter R was born and just a few years later our son S was born. Our neighborhood friendship developed into a real friendship and then, as I believe is the case with many of us here today, an even closer family-like relationship.

We all knew D as a very warm, friendly person who would go out of her way to help a friend. I will never forget when D, at her request, stayed at our house overnight to be with R when A and I left for the hospital for A to give birth to S.

All of us here have been extremely saddened since we learned a few months ago of D's serious illness and we have done much to help and support M, T, J and their families during this very traumatic time. M, T and J, please know that we will continue to help and provide support to you.

M, T and J, all of our lives will continue on, but with more strength and devotion to our family and friends because of our wonderful memories of D.

Son:

So how does a son talk about his mother? How does he stand in front of family and friends and honor her memory? How does he sum up a life in a few minutes? More importantly, how does he say goodbye?

I’ve been thinking about these things for a few months....and the only answer is, “he can’t....but he’s needs to try.”

Most of you in this room know me, some intimately, some casually....but I don’t think it’s a stretch for me to think that all of you, every last one of you knows how much I loved mom. In the past few months I have really done my best to be there for her, to remind her that she has fulfilled her destiny on this planet, to let her know that NO MATTER WHAT........NO MATTER WHAT, she will NEVER be forgotten, and to further ingrain the fact that she has had such a PROFOUND part in making me the person you see before you. I hope she left us knowing that.

Children are supposed to learn from their parents--right from wrong, how to be independent, how to treat others, all of that stuff. Somehow you grow up, you move out, you start a family of your own and your parents are no longer parents in the truest sense of the word. What they become are confidants and friends....and in many ways you feel like you have nothing left to learn from them except the occasional sage advice from an elder. But since mom’s diagnosis she taught me SO MUCH. She taught me that fighting a win-less fight for the right reasons can be admirable and honorable. She taught me that strength really does come from within and not some bullshit made in the gym or the practice field. That’s fake strength and at any moment that can be taken from you. You couldn’t take this strength from her, it was nothing short of incredible. Mom was debilitated, she couldn't hold my children anymore, she couldn’t walk, she couldn’t see very well, she became a shell of herself. But she trudged on...and with very little hesitation. She AMAZED me EVERY SINGLE DAY, because I know that in my life there are many days where I just want to give up, I just want to pack it in and be done with everything, everyone....and quite frankly, my problems are trivial at best when held next to hers. She showed me what strength and resolve really is, how powerful love is and that extra time with family is worth getting poked, prodded, moved, rolled, wiped, fed, cut open, radiated, pumped full of poison, and confined to a bed or wheelchair. I envy that strength and I hope that she knows how much I admired this tenacious attitude from day one.

She didn’t have to fight, but she wanted more time with her family....and that’s not just Dad, T, E, Micah, Maya, J, Paige, or Peyton, that’s everyone in this room. I wanted her to fight and told her this, but I never kidded myself that this was going to have a good outcome. Right after the surgery when she was pretty banged up, I questioned whether or not this was a good thing after all....and I did for quite some time. But then something amazing happened. Something I only thought possible in Hallmark movies or one of the Lifetime flix my J loves so much.........I saw family and friends alike rally around her in a manner that is nothing short of shocking. I knew she was loved, but I never knew how much she affected so many people.....and how much she continued to do so through this entire process. From the absolute bottom of my heart, I thank each and every one of you as well as the countless people all around the net that reached out. If something like this were to happen to me and I received 10% of that love, I would be an extremely lucky man.

That’s the thing that really set in with me recently...Mom WAS a lucky woman, she was raised as an only child but never felt too alone due to friends. She got married to a man who was educated, caring, and because I think I look a bit like him, STUNNINGLY HANDSOME. Together they had 2 children and they raised these kids to the best of their ability. They never wanted for anything and the house was filled with love (most of the time....when it wasn’t love, it was noise........). These kids were very different from one another, One of the kids exceeded all expectations when it came to schooling, the other........yeah, not so much, but he came around eventually. The one thing that they always had in common was their family. That never wavered. One of these kids grew up to be nothing short of incredible throughout this ordeal. My sister laid her life down to take care of mom at the end and I don’t know that I could have been more proud of her. I see what she did and all I could do is sit and watch in awe and know that in a million years, I could never be as incredible as that. Mom was lucky...but not nearly as lucky as Dad, T and I....because we got to spend 33, 37 and 42+ years with her. Without mom, I am nothing.........and I mean that literally and figuratively. I know that T and Dad feel the same.There is a void in our lives that I don’t think will ever be filled, and I am overwhelmed with a profound sadness in my heart the likes of which I wouldn’t wish on my worst enemy.

So here we are today, saying goodbye to the single most influential female in my life...perhaps some of your lives as well. I know I could have and should have been a better son in so many ways. But I don’t harbor guilt over this, because I know that mom was proud of the friend, the husband, the father........well, really, the man I have become. The truth is all I ever wanted was for her to be proud of me. When something good happens to me, the first person I always called was mom (much to the chagrin of J)....I got promoted, I got a raise, whatever, take your pick.......and the reasoning behind that call I have realized as of late is that I just wanted her to know that I wasn’t that screw up from years ago. I have always felt like I needed to make up for that little shit I was. I probably didn’t, but I wanted her to know that she didn’t go wrong with me, she actually did good. SHE deserved that.......I know that the next time something great happens I am going to pick up my phone and just dial instinctively and I know at that moment it will be like this is happening all over again, but that’s ok, because I know she’s watching me and I hope it is with a swelled chest full of pride, because again......SHE DESERVES IT.

Mom, I need you to know that J and the girls love, I won’t say “loved”, they love you and I feel terrible that they won’t get to know you as I did. Know that you DID affect them, and you WILL NOT be forgotten by them.

I am going to miss you mom, and I don’t blame whatever power is up there for wanting you to come back..........because I WANT YOU TO COME BACK, but I don’t have that power. I don’t NEED you anymore, I just really really really want you around. I promise to try to be a better man, to have more compassion for my girls, to be nicer to people, to treat J more like the goddess she is, but most importantly, to be a good son and brother to the people who meant the most to you in this world.

I have given up trying to find answers, even if there were any, none would satisfy me. But I will say this....It wasn’t supposed to be like this...........but that’s OK, because you are no longer struggling, you can rest, it’s over. You left this world knowing how much of an impression you had on so many people, I can only hope that I have that honor one day.

I love you mom and I won’t ever be the same without you. So say hi to all the grandparents for me and you better have some sweet and sour meatballs for me when I arrive someday. I love you so much and I am so sorry any of this happened to you, you deserved better.

RIP mom.

T:

First of all, I wanted to thank all of you for coming today. Over the past few months, we have been humbled by your support…on the blog, your emails, your visits, your calls, your food, your offers of help, your love and your support. My mother often said how this experience had changed her. She said that the outpouring of support for her was mind boggling, and it taught her that we should never sit back when those we know, even just acquaintances, are going through rough times. I have learned that lesson, too. We had always believed that in hard times, families needed to be by themselves…to be private. Through this experience, we learned that the love, support, encouragement, kind thoughts, and offers to help are invaluable, not intrusive.I will forever be grateful for all that you have done for me and my family during this trying time, and I am lucky that so many decided not to just let us be. My family owes so much to so many of you, and all I can do is express our thanks, and tell you that it mattered. It made life easier, it made life better, and your strength helped carry us through. We are forever changed because of this experience, and I hope that we will all be better people for learning that lesson.

Today we are here to honor my mother. I think the outpouring of support is a testament to her life….to the person she was, to her kindness, to her humor, and to the friendships she cultivated over a lifetime. I could spend days talking about my mother (and as you all know from the blog, I can certainly wax poetic at the drop of a hat). It is so difficult for me to think about where to begin, what to say. How do you summarize the essence of a person? I could tell you all that my Mom grew up in Scranton, PA, that she was an only child, that she graduated from college, that she was a social worker when she met my father, that they met when he crashed a wedding, that she worked in a series of part-time jobs when she moved here, that for the past 25 years, she worked as a Library Assistant (and eventually became the Supervisor) at a library, and that she was a loving daughter, an amazing mother and grandmother, and a good wife. I could tell you that my mother loved to read, that she was a wonderful baker and a cook, and that she crocheted and knitted some of the most beautiful afghans, sweaters and scarves I’ve ever seen in my life. My mother was kind. She loved her family, and she loved her friends. I could talk about my Mom’s humor, or our relationship, or her friendships, or how much she loved us. All of that is true. And yet…it somehow doesn’t say enough.

One of the things my mother hates most about funerals is the poem “Eishet Chayeil” – Woman of Valor. My mother felt that it extols values that she did not represent or even appreciate…a submissive woman, toiling day and night to keep the perfect Jewish home. When we received my mother’s diagnosis, I knew that there would be no reading of Eishet Chayeil at her funeral. At the time, I posted something on the Caring Bridge site about needing to find a better poem to read, and my Mom’s friend, S, gave me a card the next day, with a poem folded inside. I’ve carried it with me ever since, and I think perhaps it does a better job of identifying the “value” of a person’s life, and maybe a better framework for me to tell you about my mother:

I read of a man who stood to speak at the funeral of his friend.
He referred to the dates on her tombstone from the beginning…to the end.
He noted that first came the date of her birth, and spoke of the second with tears,
But he said that what mattered most of all was the dash between those years
For that dash represents all the time that she spent alive on earth,
And now only those who loved her know what that little line is worth.
For it matters not, how much we own; the cars, the house, the cash.
What matters is how we live and love when we’re living out the dash.
If we could just slow down enough to consider what’s true and what is real,
And always try to understand the way other people feel.
And…be less quick to anger and show appreciation more,
And love the people in our lives like we’ve never loved before.
If we treat each other with respect, and more often wear a smile,
Remember that this special dash might only last a while.
So, when your eulogy is being read with your life’s actions to rehash…
Will you be pleased with what there’s to say about how you spent your dash?

Each of you here today (and so many more who are unable to be with us) are part of how my mother spent her dash, and those of us who loved her do understand the value of that dash. I think one word that can easily be used to describe my mother’s dash is “friend.” She was a wonderful and kind friend to so many, including me – a sounding board, a confidante, and a cheerleader. My mom is a rare breed…she has so many lifelong friends since her childhood in Scranton, friends she met as a young, newly married adult building a life in a new city, friends she met through work, and more recently, friends that she collected through her struggle with cancer.

Mom would do whatever she could to help a friend…make food, run an errand, babysit a child, drive somewhere, rescue a knitting project, hold a hand, sit in a hospital waiting room, drive 8 hours to a funeral, teach their children to drive, pull loose teeth, or just sit and listen and laugh and talk. She tried her best to always be there for her friends whenever they needed her. In recent weeks, she read the book Tuesdays with Morrie, and when she finished, she asked me if it would be okay to take Morrie’s line from his tombstone (“teacher to the end”) and tweak it a bit…she wanted to put on her tombstone “friend to the end.” Friendship was one of the most important parts of Mom’s dash.

Humor was another huge component that defined Mom’s dash…she was snarky and spunky and funny, right up to the end. She had a keen sense of humor and a quick wit, and she could always deliver a well-timed line.She loved practical jokes, she loved to laugh, and she loved to yank people’s chains. Her eyes would dance when she was looking to laugh…and when my Mom decided it was time to laugh, well, it was time to laugh. I’ve often spoken of our inside jokes on the Caring Bridge site, and I’m going to miss laughing with my Mom and our silly little sayings.

I think food defined my mother’s dash. She loved to eat (especially on those steroids), she loved to try new and different foods, and she loved to cook and bake…but only from scratch. She made the most delicious apple cake, and cookies, and applesauce and mandel bread and brownies. She was constantly trying new recipes, but there were certain foods, especially holiday foods, that we liked a certain way…like her brisket, and her filled cabbage, and her blintzes, and her Thanksgiving stuffing, and her pumpkin pie. She loved a good holiday meal, and while she hated the mess and the effort, she loved doing the holidays “just right” with our food, done our way.

My mom was also a bit quirky, but her quirks were endearing and why she has been so loved during her dash. I loved that she started cooking or baking whenever a snow storm hit…usually soup, or filled cabbage, or her latest baked goods obsession (one year it was blueberry muffins, the past two years it has been mandel bread). She loved to guess the voices in television commercials (I think it is something she started with her father many years ago). She had a tendency to goose us (particularly my father) in public, just so she could hear a good squeal. I loved the silly little dances she would do for me singing the Chip and Dale song, and I loved when she would imitate cookie monster and sing “C is for Cookie…” Mom loved beautiful voices and singing…she always joked how in her next life, she wants to be able to sing.

I would also say Mom’s dash was defined by all the little things she did, especially for us. I remember as a child that she always made my lunch…and would use cookie cutters to cut my sandwiches into different shapes. She often put post-it notes in my lunch, and she would hide post-it notes with messages like “I love you” and “I miss you” in our clothing drawers when we went off to camp. My mom always had homemade soups and baked goods and applesauce for us. Every year, we would go out to the orchard and pick fresh vegetables and fruit, especially strawberries. We would pick 10 flats, and my mother would spend a day making strawberry jam and pies. We always had enough jam to last us the entire year through. I think I must have been well into my teenage years before I ever had store bought jam! Every year, she made sure to give gifts for all of her co-workers. She would start searching in July, trying to find the perfect gifts. I remember as a child all of the craft projects she did…crocheted bookworm bookmarks, pom pom magnets, lanyards and so many more, often as gifts for goodie bags or holidays. Mom was always working on a sweater or an afghan or a scarf. She used to make us hats and gloves, and I remember that she would crochet a string and attach our mittens to each end and thread them through the sleeves of our jackets so we could not lose them. She did so much for us and for everyone to make our lives…nicer.

The end of Mom’s dash has been defined by her strength and courage. This year, we lost Grammy, my mother’s mother. At times, watching my mother through this battle was like watching her become my grandmother. It was difficult to see my mother age, almost overnight. As the brain tumor and surgery affected her, I noticed some of my grandmother’s nervous habits surfacing in my mother. It was bittersweet…terrible to see in my mother, and yet it made me smile to catch a glimpse of my grandmother again. At her funeral, my mother said that my grandmother’s last 2 weeks were a true testament to her strength, both physical and mental, and that my grandmother raised the bar high and my mother only hoped that she could reach it as Grammy did. Mom – you did. You faced this horrible illness with such strength and courage, and you fought hard, and you did better than anyone predicted. I’m stunned that this stroke came along and took you out after all your fight and hard work. It isn’t fair. You faced this battle with courage, grace and strength.You earned the right to have more good time, and frankly, we were all robbed. I’m angry about that, but so proud of you and all you did. I’m sorry for all the things the cancer stole from you, and yet proud of how you held on to yourself…you were kind, you worked hard to improve, and you always kept a positive outlook. As you have said before, you raised the bar, and I hope that I can reach it the way you and Grammy did.

Before she learned of her diagnosis, my Mom never realized that she had touched so many lives. Through the blog and your messages, she learned at the end of her life that she mattered to so many, and that the things she had done made a difference. That knowledge touched her, and meant the world to her. She told me one day that you never know how the tiniest little nothing you do can be a big something to someone else. I think that is an important lesson for all of us.

Towards the end, my mother gave us a list of things she wanted to “take with her.” I think many of those things represent what she valued in living out her dash…pictures of her family, a hat crocheted for her by a dear friend, a phone so she could “keep in touch” with her loved ones, and Nugget’s remains.

I have asked the Rabbi to read the Yizkor poem “As We Remember Them” today. I have always found that poem beautiful, and I think it is true…it is in all the little things of every day life that will help me remember my mother. I will take her with me, and she will live on in each of us, in our memories of her. I believe that “As long as we live, she too will live, for she is now a part of us, as we remember her.”

I’d like to part with a poem that my Mom’s friend and co-worker, G, brought to her when she was in the hospital. It resonated with her, and I think it speaks to the value of my mother’s dash:

Count your garden by the flowers,
Never by the leaves that fall.
Count your days by golden hours,
Don’t remember clouds at all.
Count your nights by stars not shadows,
Count your years with smiles, not tears.
Count your blessings not your troubles,

Count your age by friends not years.

As We Remember Them Poem read by Rabbi:

At the rising of the sun and at its going down, We remember them.
At the blowing of the wind and in the chill of winter, We remember them.
At the opening of the buds and in the rebirth of spring, We remember them.
At the blueness of the skies and in the warmth of summer, We remember them.
At the rustling of the leaves and in the beauty of autumn, We remember them.
At the beginning of the year and when it ends, We remember them.
As long as we live, they too will live; for they are now a part of us, as we remember them.
When we are weary and in need of strength, We remember them.
When we are lost and sick at heart, We remember them.
When we have joy we crave to share, We remember them.
When we have decisions that are difficult to make, We remember them.
When we have achievements that are based on theirs, We remember them.

As long as we live, they too will live; for they are now a part of us, as we remember them.

The Funeral

2010-12-01T01:00:00.002-05:00

Overwhelmed. I have to say that I am sitting here tonight, simply overwhelmed. I am overwhelmed by the emotions from today, I'm overwhelmed by the turnout at the funeral, and I am overwhelmed by all that has happened in the past few months.

Today was an emotionally draining day...today we buried Mom. Maya was up screaming most of the night - she finally drifted off at midnight (well, after 2 car rides with Daddy), but she woke up again at 5:00 am. I gave up and brought her into bed with us so I could get a little sleep before the funeral.

The house came to life around 8:30 when our cleaning lady arrived. Megan arrived at 9 and started getting the children ready. Dad, my brother, SIL, M and the girls arrived around 9:45. We were busy getting dressed, prepping the house, organizing our things, and entertaining the children. Around 10:45, the limo arrived, and we left for the cemetery.

I forgot to eat this morning...I was feeling nervous and sad and shaky all at the same time. I wanted to get it over with...and I was filled with dread at the thought of going through this day. We were all on edge...my brother was upset because he had lost his bracelet that he considers his lucky charm, my father was empty chattering about anything that popped into his brain, and I was doing my best to fight back the tears.

We arrived at the cemetery, and I started to well up when I saw the tent over my mother's grave. We made our way to the chapel...and we were immediately greeted by our extended family. It was such a relief to see their faces. I could feel that we were surrounded by love, and my emotions started to run high.

I do not know how long we were standing there, but we were slowly moved into a room to the side of the chapel. The flow of people coming in to console us began...family, friends, neighbors, co-workers. One by one, they came. After 10 or 15 minutes, we started to become a little amazed. The people kept coming...and coming...and coming. There was a line into the room to see us, the chapel was filling up, and we could see out the window across the cemetery as the cars lined up and the parade of people made their way to the chapel. We were amazed by some of the faces...good friends, family, co-workers, and so many faces from the past. Some people drove from hours away to be there for us.

My mother's co-workers were there in droves...I can't imagine there were enough people left behind to run the library. I was so touched to see all of them, and so thankful for all the support they have shown Mom throughout this battle. My father's department was there, and many from the College administration. My brother's co-workers were there, and so many of our friends - both from the present and our childhood. DH's family came down, and those who couldn't make it sent emails. We even had a friend who was only one month post kidney transplant there to honor Mom.

It warmed my heart to see old friends...especially a few former neighbors. I was particularly touched seeing two former neighbors again after all these years. I can't even begin to mention all the wonderful faces. The faces kept triggering so many memories...of my childhood, of the past, of my mother. I can't possibly name all the hundreds of people who were there (and yes, it was hundreds - my best guess is 200-250 people), but I wanted to extend my thanks to each and every one of you. I was awed by your attendance.

The funeral started late...due in no small part to the Rabbi's late arrival (he was late because he was trying to fulfill one of my mother's requests). At one point, a hush fell across the chapel, as if everyone thought the service was about to begin. As the silence hovered, I felt compelled to announce that we were still waiting for the Rabbi to arrive.

He arrived a few minutes later, and we quickly did the Kriah ceremony - my father, brother and I each pinned a black ribbon to our clothing and tore it to signify the rending of the heart for the loss of the loved one. By 12:15, we were out in the chapel, seated, and the Rabbi began the ceremony.

He welcomed everyone, and he spoke eloquently about my mother. He spoke of her kindness, of the love she had for her family, and his impressions of Mom. He did a few blessings, and he then turned it over to those of us who were giving her eulogy.

We started with my mother's childhood friend, S. She spoke of their childhood together, and the lifetime of friendship they shared. S's speech was touching, beautiful, and moving, and she talked about the seven lovely ladies who have been forever friends. She concluded her speech with a farewell to my mom, and sadness that now there are only six lovely ladies.

My mother's boss and friend from work spoke next. She brought a splash of humor to a very sad day. P did a wonderful job illuminating the relationship between my parents, and describing my mother professionally and as a colleague. P's word made me laugh as I pictured my mother rolling her eyes at one of my father's phone calls, and she made my heart swell with pride at my mother's service to her job.

L, our family friend, spoke next. He, too, spoke of Mom's friendship and kindness, and he spoke about how through the years, like so many others, our families' relationship grew into something more than just friendship...we became family. I think that epitomized so much about my mother...she took friends and made them family.

My brother followed L. He gave a powerful speech, and I don't think there was a dry eye in the house. He talked about my mother's strength, and his love for her, and he talked about how he hoped he would make her proud.

I spoke last. I remember being weepy from my brother's speech. I also remember thinking that so much of what I had planned to say was said in a similar way already...everyone talked about my mother as a friend, and we used similar words to describe Mom's tenacity and humor. I think my brother and I even had a few of the same phrases in our speeches. As I stood in front of the room, I was stunned to see how many people were present. The room was filled, there were people standing around the edges, and I could see that the vestibule was filled.

I was having a hard time speaking. I felt shaky and I could barely see the words I had written. I suddenly felt cold and fidgety, and all I could think was "Mom is lying there in that box." I think I mumbled a few words about how everyone had said the things I had written. I worked my way through the speech stumbling at times over the words, feeling largely inarticulate and tongue tied. I couldn't manage to make eye contact and look up and out - I felt my eyes glued to the papers in front of me, and my fingers incessantly shredded a kleenex and folded the corner of my speech back and forth. I worried about whether I was speaking loudly or clearly, and I tried my best to slow things down, because I know that I have a tendency to speak 90 miles a minute when I am nervous or upset. To me, my speech felt flat...that I didn't say the right things or speak as I had intended. I felt myself wishing that I had managed to express myself as well as my brother did.

When I finished speaking, the Rabbi read the poem I requested (As We Remember Them), and he said a few more blessings. In a break from tradition, we asked my mother's friends, the ladies, to be the pallbearers. The coffin was moved on wheels, and we thought that Mom would want to be surrounded by her closest friends as she was escorted from the chapel. As they escorted Mom, the Rabbi blew the shofar...another request from my mother. She wanted a long loud shofar blast to pierce through the air and touch us all.

We walked behind the hearse and followed Mom to the grave. The Rabbi said a few words, and we lowered Mom into the ground. One by one, we followed tradition and covered her with dirt. A few more prayers, the mourners kaddish, and it was all over.

We took the limo back to the house, and there were people there. My friend H had been at the house with Megan all day, there to watch the kids, receive the food, and set things up. L (our other babysitter Christin's mother) also came over to help with the kids. My friend T and her mother, B, (and I think her sister, too), left early to get back to the house and finish getting everything ready.

We spent the afternoon eating and talking. The kids played downstairs, and it was an emotionally charged day. There was a constant stream of people in and out. Around 7:00 pm, the last wave of visitors arrived, and our friend E led a service for us. The house was full, and it was amazing to see so many familiar faces. We said Kaddish, the mourner's prayer, for my mother, and we sat surrounded by friends and family all night.

By 9:00, almost everyone had gone home. My brother, SIL and the girls decided to spend the night, and my niece M decided to stay behind with us for a few days to help out. We have been sitting and talking all night (and Maya has been refusing to sleep). I love having a full house.

Right now, it all seems surreal. I think being surrounded by so many loved ones makes it easy to forget for a little while. Tomorrow we will be holding shiva again, and I suspect the parade will continue.

All day long, friends and family took care of us - getting food, refilling the platters, washing the dishes, putting things away, tracking the gifts, etc. Thank you so much for all of your care today. I will be posting the eulogy speeches as soon as I can.

The final day

2010-11-29T12:21:00.003-05:00

I knew yesterday morning when I woke up that it would be the day. Mom's breathing had slowed and it just felt like the end was near.

The prior night (the 27th), around 11:30 pm (just after I finished the blog), I called out a false alarm in the house. I had gone in to see my mother and give her medication. As I entered the room...her breathing seemed to just slow. She made a few choking/coughing noises and groaned a bit, and I thought she was going. Dad and DH came running, and I quickly gave her medication and repositioned her. After a few minutes, Mom's breathing seemed to slow back down again and her groaning stopped. I stayed with Mom for another 30 minutes, and decided to let her rest.

I continued to check on Mom on and off. Around 3:00 am, I headed in to the room to go to sleep. When I got to the room, Mom's breathing was labored again. I gave her more medication, and she groaned a bit. I cleaned her face, I lotioned her body, and I sat with her and talked to her for the next hour and a half. Around 4:30, she seemed to be calm and breathing steadily. I climbed into the twin bed in her room, and probably woke up every 20-30 minutes to listen to her breathing and determine if she needed any more medication.

Somewhere between 7 and 8 am, I noticed that her breathing had slowed way down...only 6-8 breaths per minute. Normal is 10-20 breaths per minute, and above 24 shows signs of distress. We were told that we could not give any more pain medication once her breathing fell below 14 breaths per minute, but I was able to give Mom more medication to prevent anxiety and to dry up her congestion. I also gave Mom more Tylenol because she had been running a fever.

Dad came in around 8:30, and we talked about how her breathing had slowed. The hospice nurse called to say she would be by in a few hours. We spent the morning as we always do...with the kids, eating breakfast, and I continually went in to check on Mom. The hospice nurse arrived around 11, and she also noted the change in Mom. We repositioned her again, and we waited.

We had several friends pop by...my friend N stopped in to drop off some pasta salad for us (she had suggested a play date, but I was worried that Mom would die while the kids were over), and my friends H and B came by to bring us lunch from Panera. The Rabbi stopped in, and then S and G and G and S, and H came by, too. Business as usual, as we waited.

I kept popping in and out to see Mom. I just felt her...slipping away. She was very calm, her breathing seemed to be slowing, and she just seemed to be getting colder. I took some time to lotion up her body and wash her face. I kept her mouth swabbed so it wouldn't be dry. I noticed that her jaw had slackened...over the past few days, she would clench it tight when I tried to swab her mouth, but yesterday, it just hung loose. A few times, I thought her breathing had stopped...it was as if time was frozen as I waited and watched. After 20-30 seconds, her breathing would again resume the slow and rhythmic labored pattern, and I didn't know if I should feel relieved or sad that she was still going.

I kept stroking her head and giving her kisses, and telling her that I loved her. My mother loved to have her back and head "tickled" - just a very soft touch. We would take turns tickling each other's backs (and we would negotiate deals...if you tickle my back for 10 minutes now while we watch tv, I'll do yours next for 10 minutes before I fall asleep). I joked that she would just have to owe me one as I tickled her back and head, and in my mind, I heard her say she'd tack it on to the others she owed me for all the times I tickled her back and head in the hospital. I told her I would miss her terribly, but I told her it was time for her to let go. I promised her we would be okay, that we would stay a family, and we would take good care of each other.

I left her room around 5:45 to go prepare dinner. Not that there was much to prepare...we had N's pasta salad, we pulled out the leftover tuna and egg salad, and DH ate leftover Thanksgiving food. Micah mostly just threw food on the floor. Every 5 minutes or so, I kept running back to check on Mom. I told her we were all eating dinner in the other room, and I told her I'd be back soon. I remember leaving the room as we sat down to eat, and I noticed that her color had...faded. She was looking quite ashen, and I kept thinking that her breathing had slowed again. It was quite shallow, and it almost seemed like more of a reflex. I laid my hand on her chest, but I could not feel her heart beating. Her pulse had been so faint all day today, so it did not surprise me, but she continued to breathe. I gave her another kiss and told her I would be back in a few.

I returned one more time to the room. I entered slowly, and waited to see if her breath was still coming. When I saw her chest rise, I moved closer to the bed. I noticed that the skin on her head looked...ashen, and little purple veins seemed to be visible, forming a geometric pattern across her forehead and skull. I kept thinking it meant something, but had no idea what. I kissed her again, and said I'd be back when dinner was finished.

About 10 minutes later, I returned to the room. I again stood in the doorway...and realized that her breathing had stopped. I moved forward to double check, and I started to cry. I kissed her goodbye, and with tears going down my face and a sob escaping, I walked back to the dining room to tell my Dad and DH. They came running....I know that I removed Mom's oxygen mask and arranged her arms, but I don't exactly know when I did that.

We called my brother. He knew when he answered the phone...I think he just picked up and asked "It's over?" I think I simply just said "yes" and we didn't say much more to each other. What was there to say? My dad called the funeral home and the hospice nurse. While we waited, I started making some phone calls...to family, to friends, to everyone. I didn't know what to say...just to say "it's over." Everyone asked if we needed anything, or if they should come. I told everyone not to come. The hospice nurse arrived shortly before 7 and pronounced Mom. She stayed for a while and took care of a few administrative things.

Naturally, several people started showing up...S and L and G and S. They helped clean and organize and just kept us company while we waited. I think it was around 8:30 or 9:00 before the funeral home arrived to take away my Mom. That was the hardest part. I was worrying about her being cold and alone. I hated to send her away. We said our goodbyes, and even the funeral home attendants were crying. I can't believe my mother was in the room alone when she died. I hope that she wasn't scared or in pain, and I hope that she knew we were here with her and that we all love her so much.

We've been working on arrangements since last night. Today my father and I went to the funeral home, and here I sit...waiting and waiting. We are having trouble thinking of logistics, and I keep wanting to ask my mother for her input. Silly, right?

I cannot believe we are going through this. Thank you all for your kind words and support.

A little humor through the sad...

2010-11-28T22:48:00.002-05:00

From my brother on Facebook:

It's official. RIP Mom. I'll try my best to to continue to make you proud. Not really ready to let go, but no other choice.

And take 2 on Facebook...a little humor during a very sad time:

Well mom, looks like Leslie Nielsen decided to join you up there. So at least it won't be dull. What's that you say, "surely I can't be serious?". Well I AM serious.....and don't call me Shirley.

Fly Away

2010-11-28T19:43:00.001-05:00

At 6:15 pm tonight, Mom passed away. All I can say is goodbye, sunshine, I will miss you forever. I love you with all my heart, and we just didn't get enough time together. I have been so lucky to have you in my life - this world was better for every minute you spent here. This world will never be the same again without you, and I hope one day to have as good a relationship with my children as you have had with yours. Thank you for teaching me how to love and how to fight and how to live. Thank you for loving me, for being there to cheer me on, to boost me up, and to believe in me. You have been my anchor, kept me from feeling lost and adrift in this crazy world. I'm already lonely without you.

Waiting

2010-11-27T23:15:00.002-05:00

No real updates...but for some reason, I feel compelled to write. Maybe it is because I don't exactly know what to do with myself, and maybe it is because I suspect so many of you are out there sitting on edge, waiting and wondering, too. It helps, knowing that people out there care.

Today would have been a typical day in the household...if not for the fact we are waiting. Maya actually slept in her crib last night (well, in the car seat in her crib). She woke up around 8:00 am, and I grabbed her to bring her into bed to nurse. Actually, when I walked into her room, my heart stopped for a moment...she was jammed in the bottom of the bundle me, out of her car seat and caught between the car seat and the crib. All of the horror stories about children dying of strangulation in their cribs flashed through my mind, and I raced over to make sure she was okay. There she was, smiling and cooing, and doing just fine. Naturally, my next set of thoughts were ways to kill DH, especially since I'd asked him before he put her in the crib if she was buckled into the seat.

I took Maya back to the bedroom and decided to kill DH later. Mom was sleeping peacefully. I nursed Maya, and heard Micah wake up. I went in to wake DH, yell at him about the car seat (he claims he misunderstood and thought strapping her into the seat was more dangerous), and ask him to help with the kids.

Our morning was fairly run-of-the mill - Micah threw cereal on the floor, Maya dozed on the bed after nursing, and I gave Mom her medications and moved her a bit. I needed to do a few things to get ready for the day, so I asked DH to sit with Maya while I went about my business.

I cleaned a few things, did some organizing, got dressed, answered some calls, and made appointments with the hospice caregivers. My Dad was out running errands while DH napped with Maya. My parents' neighbors came by this morning to bring some turkey soup. We haven't tried it yet, but DH is planning to eat it for lunch tomorrow. Thank you so much for thinking of us and coming by to visit.

The social worker arrived next. She was quite kind and helpful, and she talked about the different family resources hospice provides. My father arrived home during our meeting and joined us. She stayed for about an hour, and then she left. A short while later, the nurse from hospice came to see my mother. This nurse was a bit...cold. She did not talk to Mom at all before touching her, but she did try to provide us with some helpful information. While she was wrapping up, the home health aide arrived to give Mom a bath. She took care of Mom, helped reposition her, and then she left.

We had a quiet afternoon. My friend L came over and brought lunch (bagels, tuna, egg salad) and then we went for a walk. When we returned, everyone was napping! L left, and I tried to take advantage of the quiet...but of course the kids woke up a few minutes later. I played with the kids and tried to get a few things done around the house. I went in to spend time with my mother, too.

In the late afternoon, S and L, S and J, and R and E arrived. We all sat and chatted a bit, and the ladies got to work helping me clean up the kitchen. I have to say, their help was amazing! We can find things in the drawers, the kitchen table is finally cleared off, I have counter space again (although I still hope to clear off a few more things), and my life is feeling a bit more ordered. I truly hate all the chaos in the house, and really just need a few days to put everything in order.

While they were helping, my friend B brought over dinner - spinach salad, split pea soup, and macaroni and cheese. B is a friend from the past...I met her when I was in 9th grade at a youth group convention. I was a member of a failing chapter, and we were thinking of folding the chapter and either joining another one...or just dropping out of the youth group altogether. I sat at her table at lunch (and today, I actually found out it was no accident). I had no idea that she was the Regional President. We just talked...and next thing you know, I'm deciding to become chapter president and rebuild it. That night, at an event called "Lifetime," the senior girls who held office on the council/regional level were honored. They talk about their time in the youth group, tell stories, but most importantly, they give a twig representing their past to someone who got them started, a twig representing their present to the people most influencing their present, and a twig representing their future to someone they believe will go far in the group. B gave me her future that night...and it changed the course of my youth group experience for me. I ran for President of my chapter, rebuilt it into one of the strongest chapters in the council, and then later became the Council Vice President and President. I can directly thank B for inspiring all of that, and it made a huge difference in my life. When I gave Council life 3 years later, I gave my past to B...even though she wasn't there to receive it. Over the years, we've run into each other on and off, but we never really kept in touch through any regular means. She always meant a lot to me...just the mention of her name could bring a smile to my face. I think we all have people like that in our lives...someone that just means something to us. Through Facebook, B and I reconnected. We comment on each others' statuses, we have exchanged notes, and today, B brought food and support to comfort me through a difficult time. B, I cannot even begin to tell you how much that means to me...and how much your friendship has influenced my life. So, thank you. I look forward to getting reacquainted with you.

S, S and E served us dinner at 6:00, and it was a wonderful dinner. By 7:00, they all said their goodbyes and headed out for dinner together. After dinner, my father watched tv downstairs for a bit. Around 8:15, we started the process of putting the kids to sleep. E took care of Micah, and my father helped me bathe Maya. I nursed her to sleep, and then I tried to transfer her into her crib. Naturally, the screaming ensued. I'm getting so frustrated that Maya won't sleep on her own anymore. I'm really hating this phase, and I do not know how to break her of the habit.

Krystal came by as dinner was wrapping up. She just wanted to see Mom. She was so kind - and it was wonderful to see her again. I had hoped Krystal would be here with us for a long time. I know she will be in our lives forever...and I know that Mom wanted us to celebrate Chanukah with her. So, when the time comes, we're going to have a Chanukah celebration with Krystal and her son.

We tried putting her back in the car seat, and we let her cry for over 30 minutes. Finally, DH decided to take her for a ride in the car. He came back around 10:30 with a sleeping baby, and she is currently in the car seat in the crib (properly buckled in this time). I'm hoping she'll sleep until morning. I think my goal is to get her sleeping at a normal time at night and on her own (not in my arms) for the next few days, and then we'll work on getting her to sleep in the crib without the car seat, and THEN we'll work on getting her to sleep while she is awake but drowsy. One battle at a time, right? I think establishing the habit of an earlier bedtime and sleeping alone should be the first priority, however we get her sleeping.

We are now here sitting and watching the news. I'll head back shortly to check on my Mom, and probably reposition her and give her more medications. I lotioned her up earlier this evening (her skin felt so dry, and I know she always feels itchy when her skin is dry). We gave her some Tylenol because she has a fever, I took off her covers so she could cool down, and I changed her pajama top to a sleeveless shirt. I also used the Albolene on her face, swabbed her mouth, and put the special cream on her head for the radiation itching. Her breathing was slow and steady the last time I checked in on her. I also stopped for a brief conversation...I'm not sure if she can hear me, but I wanted to talk to her about my day. I miss her laugh, and I miss our chats, and I'm just missing my Mom. Maybe that is what drove me here tonight to write.

Thank you all for waiting with us.

Quick Update

2010-11-26T21:47:00.002-05:00

I know so many are waiting and wondering what is happening here...and I honestly do not have much to report. Mom is still with us. She seems to be resting comfortably, but her breathing has been more labored today.

This morning, my Mom's friend A showed up with bagels and cream cheese for us - it was a wonderful surprise! She stayed for a bit to help clean up and do whatever she could around the house - she fixed our plants, watered them, did some dishes - it was a huge help. She seemed to be in the same mode as me...I am feeling so out of control in my life that the only thing I can do to exert any control is clean and organize. I cleaned my room, I organized my mother's room, I worked on the bathroom, and I attacked the mess in Maya's room. I also managed to get a shower today, too. I have a long way to go before I actually have the house in order, but I feel a bit less stressed now that my environment is more organized.

As A was getting ready to leave, we had a visit from the home hospice nurse. She arranged for an increased dosage of pain medication (which also helps with her breathing), and she added two additional medications for us - one to help alleviate any anxiety and relax the body (if she is aware), and one to reduce her congestion. The changes in medication seem to be helping - she has been resting comfortably once again, and her breathing has slowed again with the medication.

We had a series of calls from friends and family, and a few more visitors - our cousins, S and L, and then later tonight S and J. The hospice chaplain (Rabbi) stopped by to talk to Dad and DH and say a misheberach (blessing) for Mom. We were supposed to have two other visitors...S and G. Unfortunately, they detoured to the hospital. G is staying there over night, and we still have no word on what happened. We are thinking of them tonight, and hope that he is feeling much better.

We had a quiet dinner of leftovers, and Micah went to bed fairly easily. Maya, however, is being a little stinker. I nursed her, got her into her crib...and 20 minutes later she woke up crying. She is currently curled up on her Goppy's lap watching tv and grinning from ear to ear.

I went back to move Mom again a little while ago. She groaned loudly when I shifted her to her back. She coughed a bit, and seemed quite uncomfortable. I wonder if it was just a reflex, or if she was actually feeling/hearing. I then moved her to her other side, and she seems to be more comfortable again. Today I did our Albolene and lotion routine again, and I made sure to grease up her arms and legs, too. I hope she can feel me washing her face - she always tells me that she loves when I get my hands on her.

So...quiet evening. I will update when I can, but I just wanted to let everyone know that there really isn't anything to know. All the doctors and nurses have been telling us either hours or maybe days.

Holding Pattern

2010-11-25T20:47:00.002-05:00

I guess we are in a holding pattern. Mom's breathing is stable, she is resting comfortably, but she is non-responsive. I think this part is perhaps the hardest thing we've been through yet. We know Mom is gone...and yet, she isn't truly gone. We are talking about funerals and death and trying to think "what next"...but it is not quite time to move forward.

Mom was quiet overnight. I ended up sleeping with Maya in the room with Mom, Dad took our bed, and DH took the couch. I think Dad wanted to stay in the room, but each little sound sent him running back out to ask if she was okay. I was able to sleep...I woke when Mom's sound patterns changed and I could check on her throughout the night.

This morning, the house was relatively quiet. Micah woke up at 5 and at 7 screaming...DH might have forgotten to give him his reflux medication before bed. I woke up around 8:00 and DH, Micah and my Dad were still sleeping. I uncovered Mom, and then decided to do our daily face cleansing routine. I wiped her face with Albolene, then used some lotion on her face. She seemed to relax as I cleaned her face. I repositioned her and then started our day.

Around 9:30, the hospice nurse came by to admit Mom into the program. She was quite kind and helpful and she helped me reposition Mom in bed. We went over their services, different medications and when to use them, and we talked about their procedures.

A little later, friends came by with some food for us for Thanksgiving. We had a great visit with them, and we were so appreciative of the meal. After their visit, my father ran out and Micah, Maya, DH and I took a nap.

We received tons of calls and messages today...thank you to everyone for your words of support. We have been sitting back and quiet because we just do not know what to say. We are waiting. We are in limbo...sometimes it feels like every other day, and sometimes we sit here at a loss and crying. We don't exactly know what to do with ourselves during this time.

Ultimately, my brother, SIL and the girls went to Thanksgiving dinner at a family friend's house. We just did not think it was right for the girls to be here right now. It is one of the few times we have not all spent Thanksgiving together. I know that we plan to do our own Thanksgiving with our own family food and traditions in a few weeks, but it felt strange to be separated for Thanksgiving. DH decided to take Micah up to our cousins farm for a few hours to try and give him a touch of normalcy. He had a fabulous time, and came back with lots of leftovers.

Dad and I stayed in and ate the dinner brought for us. It was a bit sad for us...we know how much Mom had been looking forward to our annual trip to the farm. You see, our cousins finally built a house! For almost 20 years, they have been living in an apartment above a barn, and this was the first Thanksgiving we were going to spend in their new house. My mom was doubly excited because it is a wheelchair accessible house, and she knew she could go and relax and even use the bathroom there. My father and I were sad that we couldn't make it to the farm...and even sadder that my Mom will never get there.

Even if we could have found someone to sit with Mom...we didn't want her to be away from us. Even more than that, my father and I didn't think we could handle the questions. So, my father and I ate dinner, sat with Maya, and we talked. We talked about the past, and we talked about our future. We are about to embark on a huge life change, and I think we are both a bit uncertain about lies ahead.

It is so hard for me to feel thankful today...how can I be thankful when I am losing my mother? I am trying to be thankful for our precious relationship, and I am certainly thankful for all the support our friends and family have shown during this difficult time. I am thankful that so many people care about us, and I know that your strength, love and support will get us through these next weeks. I am also thankful for my beautiful children and for DH, and I know that I'm lucky to have my brother, father, and nieces to hang onto during this time. I am not, however, thankful that Maya is still awake and grinning at me at 9:37 pm. Try as I might, I just cannot get that child to sleep unless she is cuddled on top of me.

We will keep you posted...but for now, we are just in limbo...watching and waiting.

Message from my brother...

2010-11-25T11:38:00.000-05:00

My brother is not one for posting much...but I thought I'd copy his Facebook status and share it here:

I am thankful for the 33 years together with her, for the lessons she taught me, for the love she showed, for the honesty she gave, for the clarity she offered, for guidance she provided, for the support when no one else cared, for the smiles, for the hugs, for the comfort. I am just plain thankful that I got so much time with her and I am so sad I don't get more. I love you mom.

Saying Goodbye

2010-11-24T23:53:00.002-05:00

We're home. It has been a long, emotionally draining day, but we're home. All of us.

My father and I received a phone call this morning at 8:00 am from Mom's doctor. He told us that Mom was non-responsive, and that her pupils were no longer reactive. We told him we were on our way. Dad and I threw on clothes, called my brother, and I think we were at the hospital by 8:30. My brother arrived a little after 9:00, and DH and Maya came later.

When we got there, it was clearly not good news. Mom was just...kind of gone. Yesterday, she was moving, responding, looking at us, paying attention, but today...nothing. Well, perhaps I shouldn't say nothing. She had visitors in and out all day. The phone rang, too, and we put a number of people on speaker phone to try and talk to Mom (SIL and the girls, my cousin, and an old family friend). At times, it seemed like she was responding to a few people both on the phone and in person...she would fidget, she would try to move her mouth, and a few times she made some grunting sounds. I think each time she was trying to say she could hear, that she loved them. I've decided to believe that she could hear us all, that she knows how we feel and heard what we said. I read all of your messages from the blog, and will continue to read them over the days to come.

It was a long arduous day. We ended up sending Mom for an MRI this afternoon to try and figure out what had happened. It turned out, Mom either had a second stroke, or the initial stroke spread dramatically. The entire pontine region was affected, and I think we were told her brain stem as well. Ultimately, it means that there is no chance for any kind of a recovery.

After we received the MRI results, we decided to make a tough decision. No more. No more needles, no more drugs, no more tubes, no more tests, no more pain, no more discomfort. No more. We decided to bring Mom home. We asked the social worker to start coordinating with hospice, and we told them to make it happen today.

We asked about her pain/comfort level, and we decided to figure out what was keeping her comfortable and what she needed. We decided to discontinue all of her medications, except for her pain medications. We stopped the antibiotic, we stopped her blood pressure medication, and we stopped her anti-seizure medication. The hardest medication (for me) to stop was her steroid, which reduces brain inflammation from the tumor. I know that when she goes more than 12 hours without it, she normally gets a headache, and it can quickly escalate into nausea and vomiting. I don't want her to experience any pain at all, but I don't want to give her anything to prolong this either. I am hoping that because she is already in a coma that any increased brain swelling from stopping the steroids will go...unnoticed by her body. If she does have pain, we can always give her morphine...and we can always ask for a new prescription for the steroids.

It took a while to arrange the discharge/hospice plan. Mom has been on oxygen all day today...15 litres. We had to wean her to 10 litres in order to bring her home. DH had left around 4:30 to get home in time for Megan to leave, and he was waiting for delivery of Mom's oxygen tank. As is no surprise, they made a mistake in the order, and only delivered a 5 litre compressor. It was a long complicated mess to correct the problem. My brother left around 7:30, and he took some time to say his goodbyes. Finally, a little after 8:00, we were able to bring Mom home.

Dad took Maya and drove the car, and I rode in the ambulance with Mom. We brought Mom home at 9:00 tonight. The hospice nurse arrived shortly thereafter, and gave us some advice and tips. Mom has been resting comfortably for the past few hours. We've each taken some time to go in and say our goodbyes.

When I was talking to Mom, she opened her eyes, moved her mouth, and started making loud noises. I have to believe she was telling me she loves me.

Tonight, I'm angry again. I feel cheated...I think my Mom has been cheated, my children have been cheated, my brother and his girls have been cheated, and my father has been cheated. I cannot believe that we finally succeeded in getting my mom through radiation, chemo and home, that we managed to get this tumor smaller, that Mom was stronger, only to have these strokes, unrelated to the tumor, take Mom out. My brother kept saying it was like someone just doesn't want her to win.

It just isn't right and it isn't fair. I was coming to terms with the fact that cancer was going to kill my mother far too young. From the shape of Mom's tumor, the cancer would easily have given her 6-9 months, and possibly longer than that. Even with the first stroke, I think I left the hospital last night believing that maybe, just maybe, that stroke was our "miracle" - our blessing in disguise. Mom was moving her left side, and I thought that with a few weeks of rehab, we might really get her standing and walking again. I thought Mom was going to be BETTER than pre-stroke. I thought that perhaps all of this was happening so that she could have more time, quality time, time to spend with her family.

I think my optimism made today that much harder for me. This stroke came out of the blue. We had passed the danger time frame...all we had heard was that if we got my mom through radiation and chemo, there was no reason to think we wouldn't have at least 6-9 months. And as the early scans came back, as the doctors grew excited, we started to believe that she would beat the odds and be around even longer than expected. We just knew Mom's fighting spirit would triumph longer than expected.

After my initial panic that she was dying, I thought that she was going to rise above this and prove them all wrong once again. To wake up today to have my mother taken from me once again...well, I have to admit it was almost as awful as the day we learned she had a GBM. It was as if the wind was knocked out of me, once again.

Tomorrow, Thanksgiving, is exactly 3 months from Mom's surgery...and 3 months and 4 days from when we admitted her to the hospital. We went through all that hell...for fourteen days at home together. Fourteen days. She did have several months to see old friends, and we had a beautiful break fast celebration and a perfect 65th birthday party. But we only got 14 days together at home. I'm stunned...I was sure we would have months. I was hoping we'd even have a year or more. But I was sure we'd have the holidays and into next year.

So, I guess I'm just stunned. Mom is home, she is resting comfortably...and I guess we're all just waiting for the end. I hope it comes peacefully for her. I hope she knows she is loved. And I hope that she does not suffer another moment. I hope for all of our sakes that this misery does not drag on too long...and I am dreading the day when she is truly gone from my life. I lost my mother Memorial Day Weekend and I didn't even know it...and it took 6 months for this to run its course. Six months. So long...and yet not nearly long enough.

I have to work on saying goodbye to my sunshine. I love you, Mom, and I will miss you forever.

Hit by a 2x4

2010-11-24T12:47:00.000-05:00

I don't have the time or the heart for eloquence today. My mother took a turn for the worse overnight. She has likely suffered either a brain stem bleed or a new stroke. We are waiting for an MRI to confirm. Ultimately, it is not good news and the prognosis is poor. She is on oxygen and is no longer responsive. We were told to rush to the hospital today, and we suspect time is running short. My heart is breaking...I do not wish my mother to suffer another moment, but I don't want to have to learn to live in a world without her.

Glimmer of Hope

2010-11-24T06:05:00.002-05:00

The last 24 hours have been a challenge. Around 4:00 am, Mom sort of "woke up" for a bit...she was agitated, wanted something, and could not speak. It dawned on us that she can spell...so we cycled through the alphabet and she nodded at the letters to spell what she wanted to say. I have to say, I thought she was trying to communicate something monumental...that she loved us, that she didn't want the treatments to continue...something. Turns out, she spelled "H-O-T." Dad, my brother and I actually laughed when we realized what she was saying. We did our best to help cool her down, and she went back to resting.

Since Mom was looking stable and alert, and since we were told she would not get a room until the next afternoon, we decided to work out "shifts" so we could get some rest. Dad wanted to stay, and I desperately needed to get home and pump because I was so uncomfortable, so my brother and I left around 5:00 am.

We woke up around 8:15, and I think it took us another hour to get out the door (the phone was ringing, we had the kids here, I had to gather a few things). My brother and I were back at the hospital by 9:30, DH joined us, and Mom was still in the ER. She was very sleepy, and not as interactive as when we left at 5:00 am.

Mom was trying to communicate again...this time, she wanted a pen. We tried giving her one to write, but she was not yet able to hold a pen and write (since it is her right side affected). She was clearly frustrated. She finally was able to tell me that she had a headache and was nauseated, and it dawned on me that she had not yet had any of her steroids since 11:00 the prior evening. I also realized she had missed her morning dosage of her anti-seizure medication. I went out to talk to her nurse...and she said "oh, those medications were written up for oral administration, and since she can't swallow I didn't give them to her."

Naturally, I went ballistic. I was infuriated that they would withhold medication from a woman with brain cancer, especially, the medication that was keeping her safe and pain-free. They initially ignored me, but I was quite insistent...and eventually had the nurse manager, a patient advocate and a few others scurrying around to correct the problem. I made it quite clear that this was a huge error that was tantamount to negligence, and that they were causing HARM. My mother keeps saying that the medical oath includes the phrase "First do no harm" and yet all of these medical professionals continually seem to do harm by ignoring and being careless.

Once they gave Mom her meds, I felt much better. Somewhere in the middle of the hoopla, DH took Dad home to rest, and my brother and I stayed with Mom. One of the fellows from the stroke team came by...and he was terrible. He barely spoke two words of English, and he was unable to answer any of our questions. Luckily, I have a friend who is a neurologist, and DH faxed her Mom's MRI scan, and she called back with more specific information.

As we have learned, Mom's stroke was relatively small, but it is in an area of the brain called the pontine region. The pontine region is sort of the "traffic cop" for the movement on the right side, and for the facial/throat muscles that are needed for speaking and swallowing. The language center is unaffected, so right now Mom can understand, she knows what she wants to say, but she is unable to make her muscles cooperate to allow her to speak. In patients without brain cancer, these types of strokes are usually highly responsive to rehab. Unfortunately, because of all my mother has been through, we just cannot predict how she will respond.

Ironically, the "best" news of the MRI was my mother's tumor. It really has shrunk significantly and the swelling has dramatically decreased. The midline shift has greatly reduced, and the ventricle had re-inflated. This is much more than we were told to expect only one month post surgery and radiation, so from a cancer perspective, Mom is in good shape right now.

She will need speech, physical therapy and occupational therapy, but the most important component will likely be speech. We need to teach her how to re-route the control function, and then she should be able to speak and swallow again. We will know in another day or two how quickly she is recovering. She will need to do several swallow tests over the next few days, and they may need to start giving her some nutrition through a feeding tube. That is definitely a touchy situation...we really hate the idea of a feeding tube, but our expectation right now is that the tube is just a temporary solution until we can get Mom swallowing again on her own. It may be possible to avoid the tube altogether if Mom can pass her swallow test.

It was after 1:00 pm before we finally had a room. My brother and I had complained about the earlier visit from the stroke fellow, and the stroke nurse coordinator was there to meet with us. She was lovely, and we requested that we see a different doctor with better patient communication skills, and she told us the doctor would be by in the afternoon.

As Mom was transferred to her room, SIL arrived. She had dropped the girls off at our house to play with Micah while she came for a visit. She was there for a few hours before heading home (and unfortunately got caught in terrible rush hour traffic). Mom is actually in a great room, and her nurses are quite kind. After we got our room, the visitors started to arrive. Mom was aware that everyone was there, but she was very sleepy. She was still communicating that she was uncomfortable, and we tried over and over again to adjust her position. Her left leg and arm are actually moving quite well - somehow, since she is unable to use the right due to the stroke, she seems to have re-discovered her left side again.

As promised, the neurologist came by in the afternoon. He did another full background and an examination of Mom, and he was quite kind with her and he took a long time to talk to us. My father had just returned to the hospital, so we were all there. While he was reluctant to promise anything, he did give us better information. He agreed with my friend's assessment that these strokes are usually responsive to rehab, but we just have to see what is happening with my Mom. He talked to us about the treatment plan - they do expect Mom to be in the hospital until next week sometime. He will be sending a speech language pathologist in and the rehab doctor for their evaluations and recommendations, too. Our first goal is to work on the swallowing and try to get her eating again, hopefully on her own. We do not yet know if Mom will go to an acute rehab or a sub-acute rehab - it all depends on how awake she is and able to cooperate with treatment. He even gave us hope that perhaps she could walk with a walker again...especially since she now is able to use her left arm and leg.

After seeing the neurologist, we also got a call from Mom's oncologist. He was very sorry to hear about Mom, and he said that he had looked at the scans and the results, and he thought the whole thing was "weird." I gave him my version of the story (again), and he kept asking me if Mom had a drop in blood pressure. According to him, this stroke was not caused by the cancer. It is in a different, unrelated and unconnected region. He also said there is no evidence of a clot or a bleed, and while most doctors presume it was caused by a clot, he thinks that would be unlikely given Mom's low platelet count. He feels that Mom's stroke was caused by a lack of profusion (blood flow) to her brain, and he thinks that Mom either had an allergic reaction to the medication or to the platelets (platelet transfusions can cause reactions, which is why they give benadryl along with the platelets). He thinks that while Mom was having the reaction, Mom's blood pressure dropped dramatically and caused the stroke. He also said it could turn out to be "good news" in that it may be more of an ischemic attack than a true stroke, which would mean that the effects could be more temporary and resolve a bit faster. I guess we'll just have to see how this unfolds.

Mom's friend drove me home a little after 6, and my brother left at the same time. I came home, dealt with dinner and bed for the children...and then I fell asleep on the couch. My father came home around 11, and he went to sleep. My mother is by herself at the hospital. We decided not to get an aide because the care ratio there is good, and frankly, there isn't much an aide can/will do for her. I think Mom would be more frustrated that there is someone there with whom she cannot communicate. I hope they check on her frequently throughout the night, and I hope that she is able to communicate what she needs. We'll all be headed back in the morning, and we'll see how the night went.

I will update again as soon as I can. I did read the blog messages yesterday and some of the blog - Mom is still able to listen, so your words of encouragement will help a lot right now.

Hospital Ping Pong

2010-11-23T02:22:00.002-05:00

Surprises...I've never been much for surprises. I like to plan, I like order, and surprises...well, they cause disruption. While some surprises can be beautiful, I always find my surprises rather unwelcome. Today was no different.

Mom had an okay evening last night. She was up talking to me and recording messages for the family until late last night. She woke up around 6:00 this morning. I helped her out, and we chatted a bit. I gave her insulin a little early and gave her a snack and some juice. I went back to bed for a little while. Micah woke up early, and DH actually got up with him while I nursed Maya.

At 8:30, Senait showed up to help us out today. Mom was sleepy and did not want to wake up again. We let her sleep until 9, and then woke her up. She ate breakfast in bed and Senait got her bathed and dressed while I helped her with medications. Dad, Mom, Maya, Senait and I were out the door around 10 to go get Mom a platelet transfusion. Senait was very helpful and kind, and she was pleasant to have around.

While we were getting the transfusion, Mom listened to music and I called the doctors to see about getting her antibiotic changed. They ended up calling in a new one for her. Dad left at 1:30 for an eye doctor appointment and we wrapped up around 2.

We were home by 2:45, and Mom met with her speech language pathologist. He said she was doing great, and we worked on a list of goals. After speech, Mom rested a while and then her physical therapist arrived. She noticed increased weakness, but worked with Mom for an hour.

At 6:00, Senait brought Mom out for dinner. Dad arrived home, DH left for his volunteer night, and we sat down to a meal of leftover chicken and vegetable soup. Mom was eating well (and asking if we had more couscous), and Micah ate nothing.

During dinner, my friend Heather and her dog Bentley arrived. Bentley and Micah were chasing each other and playing. Micah was playing tug, and peals of laughter poured out. My mom was smiling at Bentley and grinning at Micah. At 7:30, Mom went back to her room. Micah and Bentley kept running in to check on her.

Heather and Bentley left around 7:45, and my Dad took Micah downstairs to watch Dancing with the Stars while I nursed Maya and checked on Mom. She was getting sleepy, so I told her I'd be back at 10 with her meds unless she needed me earlier. I tried several times to put Maya in the crib, but no luck. At 8:30, I went in to let Senait go home, and Mom was sleeping. Actually, she was snoring loudly with her eyes open and it was a little creepy. She wasn't waking up easily and I was worried. When Senait left, I grabbed the baby monitor to listen for Mom.

I tried putting Maya in her crib at 9, and I let her cry until 9:15. Mom was getting restless and she was coughing. I wondered if the baby was bothering her and it looked to me like she needed to sit up and maybe drink some tea or suck on a hard candy. I went and got Maya and asked Mom if she needed anything. She didn't respond, and I thought she couldn't hear me with the headphones and iPod, so I walked over to her. As I got close, it seemed Mom was choking. I dropped the baby on the ground and called for Dad. He came running, took Maya, and I told him to call 911.

As I asked Mom questions, she indicated that she was not choking but couldn't breathe. Her tongue was swollen and her lips were puffy, and I thought she was having an allergic reaction to the antibiotic. I thought about giving her Benadryl and then knew she couldn't swallow. Mom was indicating that her throat was closing up. I happen to have an epipen for allergic reactions and I decided to give it to Mom. I ran and got it...but it took me a few tries to get it working. Immediately, Mom started breathing easier and the swelling in her face went down. As she relaxed, we realized she was having issues speaking...and then she couldn't speak at all. The paramedics arrived, and Mom was doing fine. She could smile, she could move her right side, she was alert and responding. They left for the hospital with my father while I waited for DH to get home. DH was hone a few minutes later and I left for the hospital. We were allowed in back, and Mom had deteriorated. Her right side was not moving and she could not speak. They did a CT scan and MRI. While we were waiting, family friends and then my brother arrived. We learned that she had a stroke, and the prognosis is poor.

We are waiting for a bed in the CCU. They cannot administer the stroke protocol, so all we can do is wait. Her congestion is bothering her. She knows what is going on and is responding with her eyes. We will know more tomorrow, but things are rough.

Scattered

2010-11-22T00:32:00.001-05:00

Scattered...my thoughts are scattered, my house is scattered, and I have a feeling this blog post will be a bit scattered. It is 12:30 am, and Maya is once again awake and screaming. We thought we had it figured out...we got her a mobile and she spent the past few hours in her crib calm. She really just resists every approach to good sleeping habits that we've tried. The thing is, she does sleep well...she just doesn't want to sleep alone, and she does not want to go to sleep early. I hope we don't have to worry about what that portends for her teenage years.

Mom had a decent night last night - she woke up once overnight, and then again at 7. I hope that as she becomes more comfortable she is able to sleep through the night again - it would certainly be easier on all of us! At the hospital, she was sleeping 12 hours a night, but lately she seems to wake up every 3 hours or so.

Today was a better day with the caretaker...Anna was here, and she did a fine job. She showed up 30 minutes early, and she had lots of down time today (including a 2 hour nap), but she did do my mother's laundry today. If we need to use the service again, she would be fine. Mom was quite sleepy again this morning, and she has had a headache on and off all day. I got out for some quiet time with Micah at swim class while Dad babysat Maya and DH volunteered cooking 1100 meals for the homeless. I wasn't able to join him this year...it was just too difficult with everything going on in our lives right now.

When I got back from swim class, I made lunch for Micah and Mom. After lunch, Micah took a nap and we had a parade of visitors all afternoon. It was a fun day for my mother. Once again, we had plenty to eat for dinner, thanks to our visitors. One of Mom's co-workers brought over a delicious Peruvian dish made with potatoes and beets that we ate for our appetizer, and another friend made more vegetable soup that we ate for our main course.

Our plan tomorrow is to go to the hospital for Mom's platelet transfusion. We did finally get the results of her bloodwork from yesterday - her platelets had dropped all the way down to 18,000 but her white blood cell count was up a bit. She was running a fever again today, so I'm concerned that her antibiotics may not be working. We'll see what they say tomorrow.

Mom has been having a rough night. She was exhausted and went back to her room for bed around 7:15. She has yet to fall asleep at 12:45. She has been tossing and turning and coughing all night. She has been anxious and worked up about some things, and she is also worried about her appointments this week. Tonight, she wanted to do a few more video messages, so it was a tough night for me, too, as I sat there crying while filming her. I just hate to think about all of this, but I know how important these videos will be for us one day. I hope that Mom is able to sleep tonight, and I hope that she starts feeling better.

Murphy Brown

2010-11-20T23:47:00.002-05:00

I'm starting to feel like Murphy Brown. For those of you who never watched the show, there was an ongoing joke about Murphy Brown and her secretary. Almost every week, Murphy would have a new secretary...and she kept firing them. They were all incompetent, and it was with good cause, but after a while, her secretaries just became numbers...6, 13, 42....

As you can probably guess, our luck with caretakers has been...well, horrible. All I want is someone competent, willing to do transfers, who is flexible, and doesn't have a problem with children. Sounds simple, right? Apparently not.

The past few days, competence has been the big issue. I can't even remember how many I've fired so far. A few I just requested not return (at least 2 of them), but today I actually had to fire another one. Krystal - if you are reading this, we are counting down the hours until we see you on Tuesday!

Perhaps I'll just back up again and start from the beginning. Last night, Maya was a disaster. We just could not get her to go to sleep in her crib. I ended up taking her to bed with me at 2:00 am...she only wants to sleep snuggled close to me. My Mom was up on and off a few times last night. I went in around 1:00, 4:00 and 7:00. I really did not manage to get much sleep.

Our caretaker, Mariama, arrived at 9:00 this morning (1/2 hr late) - the same one we had yesterday. Once again, she decided to start her work day with her "breakfast" break. I have to say, I've always believed that if work starts at 8:30, it implies that you eat breakfast PRIOR to arriving, not after you get there.

My mother was sleepy this morning...we had to rouse her from bed at 9:15, and Mariama got Mom bathed. I transferred Mom to her wheelchair, and we brought her out for breakfast. I made Mom breakfast, and she decided to go back to bed after eating. I moved Mom back to the bedroom, and she napped for a while.

I've been a bit unclear as to what Mariama actually does. She does not transfer Mom to/from her wheelchair. She did help bathe Mom, but she doesn't seem to sit with Mom while she eats, and she doesn't organize Mom's things, or change her sheets, or any of the other things I expect. She does not stay in the living room with us when Mom is out of her room, and she does not seem to do anything while Mom is napping. She did continually come and ask to hold Maya...and while I appreciate the gesture, I needed her to focus on my mother, not the baby.

DH took Micah to services, and Maya stayed behind with me. My father was out running errands while I took care of things at home. Around 11, a nurse arrived to draw blood from Mom and "resume" her therapy treatment plan. This was a male nurse...who must have smoked about 3 packs of cigarettes before walking in the door. I could see a puff of smoke around him, and the stench was so awful that it had both me and Maya coughing and sneezing. Mom and I were making faces and mouthing words to each other about the stench behind his back, and every time he turned, I squirted more of the biological odor eliminator in the room! It was an adventure, and I couldn't wait until he left.

At 12:00, I made lunch. Mom wanted pizza, so I made pizza. I guess some of the cheese must have dropped onto the bottom burner, and suddenly the house was filled with smoke. Luckily, only one small piece of cheese burned, and the pizza was perfect. As I was airing out the house, two of my friends dropped by...with a delicious bread they picked up. They only stayed a little while, but Maya was in love with my friend's husband - she batted her eyes at him and gave him great big grins while I ran around the house.

Mom enjoyed lunch, and seemed to be in good spirits. My brother had called to tell us he was on his way over to visit. After lunch, I moved Mom to the couch. She rested comfortably there until my brother arrived. She sat and chatted with him for a few hours, and then my father came home. My brother and Dad left to go back out and pick up a few things we needed, while Mom, Micah, DH, Maya and I napped. As far as I could tell, Mariama was napping in Mom's bedroom from about 12:00 until 4:00. At 4:00, Mom woke up and needed to go back to her room. I asked Mariama to help me with Mom, and she informed me she was on a lunch break. I then said to her that Mom needed help now, that she had been on a break for the past 4 hours, and that I needed her to help. She actually got quite rude...she insisted that I owed her a lunch break and it was wrong of me to interrupt her. At that point, I got pissed. I told her she had just had a 4 hour break, and she should have eaten her lunch then. Her response? "I wasn't hungry then, and I can't eat when I'm not hungry. Now I'm hungry and you owe me a break." At this point, I was incredibly unhappy. She started bitching about how wrong I was for ruining her lunch, and I asked her to just stop yelling and disturbing my mother. She then talked back to me...she told me to stop talking. I was furious...I couldn't believe her behavior. I moved my mother to her chair, brought her back to the bedroom, and asked Mariama to assist her. I was listening over the monitor, and Mariama was slamming things around and bitching about her lunch break. I walked back into the room, asked her to please stop the yelling and just do her job, and she again told me to stop talking. I left the room in tears, and my father asked her to stop yelling, too. He then called the service and informed them that we wanted to release Mariama. I spoke to the manager, explained the story, and we told Mariama to go. She spent the next 35 minutes "packing up" and yelling. She then tried to add the extra time to her time sheet.

In the midst of all of this, another home health aide arrived for an interview. All I could think was "great...they are here as I'm firing someone, I'm sure they'll never want to work for us." It was a man named Demisse who arrived, with his friend Senait. Demisse was one of the caretakers for my cousin's father, and she told me to call him. My mother has not wanted a male caretaker, so Demisse brought along a female friend to help out. We sat and talked, they saw the situation, and they actually jumped in and helped out with my mother! Demisse was wonderful - incredibly kind and clearly experienced. I can tell that my cousin was lucky to work with him.

Senait was quite kind. She seems willing to work and flexible. It was hard to tell much more from our short interaction, but she was sweet with my mother, and seemed to understand what I wanted. Demisse seemed to be helping her some, so it is hard to tell if she is as skilled. I have to say, I was in tears for most of the interview, and they were just so supportive and friendly. She agreed to come work with us on Monday and Thursday this week, and she said she is available to work every Friday through Monday. I'm going to test her out this week and see where we stand, and I promised next Monday to Edna.

Demisse stayed a bit later to help out more, and neither one of them would let us pay them for their time today. Demisse also said that he would be happy to work some nights and weekends now and again (especially on days when I go out of town, or even out for the evening). My cousin was right...he is a wonderful man and he was a huge help today. I am hopeful that things will work out with Senait. If not, there are still 2 other caretakers we've interviewed that are possibilities.

After all of this nonsense, we were left without a caretaker for the evening, but it felt like one of those days that would just be easier to finish on my own. DH went out to dinner with a friend to discuss a business opportunity, and Dad and I ate dinner with Mom and the kids. Mom wanted hot dogs, so it was a gourmet meal. After dinner, Mom sat in the living room with the kids for an hour, and Dad worked on the dishes. I got Micah ready for bed, and Dad and I did the double team thing to put Micah to sleep. Dad took over with Maya while I helped Mom get into bed. I was with Mom for about 30 minutes, and then I spent the next hour trying to put Maya to sleep. That child falls asleep, but every time she realized she was alone in her crib, she started to scream again!

At 10:00 pm, I was with Mom to give her pills and help her get ready for bed. Mom also wanted to record some messages for the family. So, we took some time for her to talk. I was in tears, of course. Poor Dad...Maya screamed for the better part of 1 1/2 hours in his arms! He did a great job keeping her busy, but it was a rough job. DH got home around 11:45, and Dad went to bed around 12:15 or so. It is now 1:00 am, and Maya still won't let us put her in the crib.

Tomorrow, we have Anna, the caretaker who worked with Mom her last night at the hospital and our first night with her back home from the hospital last week. She seemed nice enough, so I'm hopeful that tomorrow will go smoothly. I somehow need to figure out how to get Micah to swim class in the morning. I don't think we have anything else planned for the day, and frankly, I just don't think I'm up for it. I hope that we have some visitors...Mom looks forward to having company.

Two more days until we have a Krystal day! Right now, I spend all week looking forward to our Krystal days. Krystal days are wonderful...things run smoothly, we have a routine, Mom is always safe and cared for, my mother's room is organized, my mom is relaxed and so am I. Krystal days come with a lot of smiles and a sense of calm. It makes me wish every day was a Krystal day. As I enjoy my Murphy Brown tour of the nursing service system, I am appreciating more and more how lucky we are to have Krystal, and that I get to have some Krystal days.

I'm going to try and get some sleep before my mother wakes up again. I think my current plan is to take the baby into bed with me - I just cannot do another minute of crying tonight. Micah already woke up once, too, so I've hit my limit for the night. I'm hoping that tomorrow will start off a new week filled with good news for which I can truly be thankful!

Chaos

2010-11-20T00:26:00.002-05:00

Chaos...it seems to rule my life these days. Half the time, I do not even know if I am coming or going. My memory has always been one of my most valuable traits...I have a nearly photographic memory. I can remember entire pages of text, I can repeat conversations word for word, and I can remember phone numbers and locker combinations from 30 years ago.

Lately, however, I am getting distracted. I make appointments on the phone, and by the time I get to my computer to write them down, I forget what I am doing. I walk around all day knowing that I have forgotten appointments, but unable to remember what or when. Sometimes, I am momentarily surprised when people or appointments show up, then I become embarrassed that I forgot to pay attention.

Today was one of those days. We got up this morning, and at 8:30 our home health aide arrived. She immediately indicated to me that she was not comfortable doing transfers, so I could tell it was going to be a long day. We had hoped that it would be a quiet day at home...but we ended up needing to go to the hematologist's office so that Mom could get a shot of Neulasta (a 2-week shot that helps raise her white blood count). We got Mom up, fed, dressed and ready, but it was about 10:15 or so before we made it out the door. On our way to the office, we received a call from Mom's home health nurse, saying she was on her way to draw Mom's blood. Mistake number one...I had forgotten she was coming. To be exact, she never gave me a specific time, so I kind of didn't bother to pay attention to the appointment. I knew she usually came in the morning, but I just forgot to call her to tell her we needed to go to the doctor instead.

When we arrived at the office, we stopped off briefly at the surgery center to say hello to one of my best friend's mother. It was a nice quick visit, and Mom was thrilled to be out and socializing. We then went upstairs to have Mom's shot and get blood drawn for another blood count. The office was moving quite slowly...I think we were waiting for well over an hour (between the time sitting in the waiting area and the time waiting for the blood test results). We had one odd but kind thing happen...an older man came over and gave me a gold dollar coin - he held it out to me and asked if he could give me money for the baby. I was a bit stunned, and initially told him that she could not play with coins. He said he understood, and just wanted to give her money. I thanked him and took the coin...but perhaps I should not have watched all those spy shows on television tonight, since they make me wonder if there is a hidden tracking device or state secrets embedded into the coin.

After keeping us waiting, the nurse came back to tell us that Mom's platelets had dropped down to 28,000. They informed us that Mom will likely need a transfusion on Monday morning. I have to say, I was a little ticked...I wish they had just kept her in the hospital overnight and done the transfusion this morning before releasing her. I don't think that the doctor who has been seeing her in the hospital really understands my mother's condition, or how hard it is to get her in and out of the house right now. It isn't just the physical transportation...my mother does not have a lot of stamina. Long trips, and time spent in her wheelchair are a huge drain on her. The doctor seems to make all the choices that make life toughest on my mother.

Initially, they wanted my mother to go to a second lab today to get her blood type and cross test done. While the lab was conveniently located, it was already 12:00 (Mom had not yet eaten lunch, we did not have her insulin on hand because we expected a quick appointment, and she was already saying that she was too exhausted to continue sitting in her chair) and it was too much for Mom to stay out any longer. While the nurse seemed to think I was a raging bitch (she kept telling me that the transfusion was important, as if I didn't care about my Mom's health), I don't think they comprehend how physically taxing some "simple" things like just waiting another 45 minutes for a blood test really are for my mother right now.

I updated the nurse about getting a phlebotomist from the outpatient clinic to come to our house, and asked her to arrange it. I then took Mom home. We were in the door about 5 minutes before Mom was too exhausted to even sit at the table for lunch. Instead, she stretched out on the couch while I fed her lunch.

On our way home, Krystal called! We'd been worried about her since her hospitalization. She is doing well, and is finally starting to feel better. We were so relieved - we were worried that something terrible had happened.

After lunch, we received a call from the hematologist...the lab was unable to come to draw Mom's blood. But, the nurse had worked out a solution and convinced the transfusion center to draw Mom's labs on Monday when she goes for her transfusion. Only one minor hiccup...they wanted us at the center between 8:30 and 9:00. I nearly laughed...it is impossible to get Mom up, fed, dressed, medicated and out the door that early. She barely made it down the stairs in her pajamas to therapy at 9:00 am at the nursing home, and that was with an army of staff support! I tried explaining this to the nurse, who again acted like I was crazy and not interested in my mother's health.

Luckily, the transfusion center called me directly...and they understood our situation. In fact, they remembered talking to me a few days ago and seeing my mother, and they said they could be flexible on the time under the circumstances. We were so relieved! In the meantime, I also sent a note to mom's oncologist - perhaps Mom can get a transfusion up at the hospital on Tuesday when we are there all day for testing anyway.

We had a couple of hours of quiet while Mom rested on the couch. Well, almost quiet - the dishwasher repair man arrived. Actually, we were expecting the dishwasher to be replaced, but for some reason, our landlady sent out another plumber for a third second opinion. I'm not sure we will ever see a new dishwasher!

In the late afternoon, the parade began! First, my friend N (mom's dentist) came by to help fix one of Mom's crowns. While N was here, one of my parents' neighbors came by with dinner for us! It was a chicken and vegetable dish with rice and a salad. There was a lot going on (and the phone was ringing off the hook, too), so Mom was not able to give her full attention to either of our guests. After they left, a caretaker showed up for an interview...and I have to admit, I had forgotten that I had asked her to come over. She seemed nice...but I have no idea if she is an appropriate match. We may give her a try one of these days and see how it goes. I'm a bit uncomfortable, though - she works for a well-known service, but I got to her in a random way. The home health nurse recommended someone (who is currently unavailable), and that aide recommended this woman.

After the interview, Mom rested a bit in her room for an hour. When she woke up, dinner was served - and it was delicious. After dinner, Mom was relaxing on the couch. We received a phone call from one of Mom's co-workers, and I have to admit I did not remember they were planning to come over. Luckily, Mom was up and eager for a visit. They were here for over an hour, and I think it was a lovely visit.

Our home health aide left around 8:30 pm. I have to say, I was not particularly impressed. She did not do any transfers, she forgot to brush my Mom's teeth, and she did not help Mom with anything unless I specifically told her to do it. The one good thing...she did like to hold Maya, and she volunteered to wash all of our dishes, so she did score a few points. She is supposed to be here until Monday, so we'll see how it goes.

Maya has been terrible tonight - she just wants to sleep on one of us. I wish she would just go to sleep. I have a feeling Mom will be up a few more times tonight, but who knows. I hope tomorrow goes smoothly! We have another caretaker coming in for an interview - perhaps one of these days we'll find another person we like as much as Krystal...or at least another person we can trust.

Coming Home...Take 2

2010-11-19T04:46:00.001-05:00

Mom came home tonight! It was a bit of a surprise...we were told she would not be home for at least another day. I guess her doctor changed his mind, because she was released around dinner time. Her white blood cell counts are on the rise, and her platelets are relatively stable. She still has a long way to go to fully recover, but for now, she is home, sleeping and all is well.

It was a typical morning in our house...Maya finally slept through the night after I got her into her crib at midnight last night. Megan arrived at 9, and I took Micah to preschool today. We had a fun day in preschool, playing, making menorahs, and mostly behaving. Micah and I returned home a little after 11, and I traded children with Megan and headed back out the door to take Maya to a class. Maya and I met up with our cousins, and we had a great time. After class, we went to a quick lunch, and then Maya and I went to the hospital to visit my mother.

As we were parking the car, DH came out! He had popped in to visit Mom, too, on his way back from his meeting. I went inside, but only stayed about 1 1/2 hours. While we were there, the doctor decided to release Mom, so I drove home so that DH could come back with the wheelchair van for Mom.

I waited at home with the children...and Micah was being awful. He was whining at everything! He wanted his tricycle in the house and his helmet on so he could ride around inside. I finally just gave in because I was so sick of the whining and crying! He ended up eating an early dinner - mostly blueberries, with a bit of yogurt and noodle kugel.

When Mom came home around 6:30, I gave her dinner. It was one of the strangest meals we've had in a while...noodle kugel, egg rolls, couscous and chocolate ice cream. She stayed out with us for a bit longer, then headed back to the room. We had an aide here to help us for a few hours, but she mostly sat in Mom's room the entire time. She did help get Mom ready for bed while DH, Dad and I bathed the children. Micah went down easily, but Maya fought sleeping until 11:00 pm. Mom slept from about 11:00 until 4:30, and she is already back to sleep. We have a new aide scheduled for tomorrow (from a service) so we'll see how that goes.

All Quiet on The Home Front

2010-11-17T23:12:00.002-05:00

Not much new today...Mom is still in the hospital and will be there at least until Friday. Her white blood cell count is not climbing yet, and her platelets dropped a bit today. They will not release her until her levels come up and they see an "upward" trend in her numbers.

Today was a quiet day at home - Micah and Maya slept until 8:30, and Megan arrived at 9. Mom called this morning - she told us that the caretaker we hired dropped her, so we worked on finding an alternate person for tonight. The service was quite concerned, so they arranged for us to have a LNP instead of a CNA for tonight. Megan took Micah to his class, and I stayed behind with Maya. I took care of a few odds and ends, and then Maya and I left for the hospital around 11:30.

Mom seemed pretty good today. We spent the day talking and relaxing and sorting through a few more points with the hospital staff. We finally got to the bottom of the incident last night - according to the nurse on duty, Mom slipped and the nursing aide barely had her on the bed, but she never actually dropped her to the floor. Not much comfort, but the good news was Mom was not hurt. I also got some answers about how to get Mom any future transfusions without jumping through all the complicated hoops - it turns out, there is a client services center at the outpatient blood bank, and they will come to the house to do the type and cross blood draw for patients like my mother.

My Dad kept telling a stupid story today...but he kept saying the word "willy" instead of "wedgie." I told him the next time he got the words mixed up, I'd give him both a wet willy and a wedgie, and then I was pretty sure he would learn the difference!

We did have one semi-serious discussion. My mom is now eligible for another rehab visit after this hospital stay. She has maxed out the benefit from our private insurance, but she now has Medicare Part A, and she is entitled to additional days of rehab through her Medicare plan. I asked Mom if she wanted to just come home from the hospital and continue with the in-home rehab or if she wanted to check back into a nursing home for a few weeks to do more intensive rehab. I told her the decision was fully hers - that we would be thrilled to have her back home, and if she wants to try rehab, we would support that, too. She isn't sure yet what she wants to do, so she'll spend the next few days mulling it over. I told her that no decision was permanent - if she tries rehab and would rather come home, we can check her out at any time. If she comes home, she has three days to check into an inpatient rehab center. So, we'll see what she decides. I can see the pros and cons of both...part of me wants to just bring her home and enjoy this time, but the other part of me thinks she could make some more progress, finish up those rehab days that were cut short, and perhaps rebuild her strength if she goes to rehab. She may be able to accomplish those goals with home therapy, too. I am worried that she has become weaker in the hospital, and it may be harder to transfer her and take care of her at home if she is now weaker.

Today, we had a nice change of pace. The cancer wing had a tea hour, and at 2:00 we headed down to drink tea, eat cookies and relax. My Mom's friend and my father showed up while we were at the tea, and we had a lovely afternoon. Dad got some good information from the social worker that he needed, and I got a list of oncology massage therapists that visit the house.

After tea, Mom was tired. I left for the afternoon around 4:30 and headed home. I played with the kids for a few hours and then DH sat with them while I prepared dinner. Just as dinner was ready, DH decided to run up to our friend's house to pick up a dining room table they offered us.

Dad, Micah and I ate dinner together - noodle kugel and tuna cheese melts. DH arrived home in time to put Micah to bed, and Krystal called to give us an "end of the night" update about Mom. Dad and I ran back to the hospital to check on Mom and the new caretaker. Her name is Anna, and she seems perfectly nice - we'll have to see if Mom feels she is able to help out. We only stayed a short while, but everything seemed fine. If Anna works out, we could try her out at home, too. I have a few other names of caretakers, so I think I'll be interviewing a lot over the next few weeks.

Maya has been quite uncooperative - it is 12:15 and she is still wide awake. She is definitely my daughter, no question!

Productive...and a trip to the ER

2010-11-16T23:30:00.000-05:00

Today was an incredibly productive day for me. I actually got to sleep around 1:30 or 2:00 last night, and slept straight through until 6:30 am when my Mom called. I was able to head back to bed and doze on and off until 8:30 when Micah and Maya woke up. I nursed Maya this morning while DH got Micah breakfast. Megan arrived at 9:00 and helped DH get Micah ready for preschool. DH left with Micah for preschool around 9:15, my father left to run his errands, and Megan took over with Maya.

Over the next 2 1/2 hours, I managed to clean the house for the cleaning lady, unpack a few boxes, dig out a few things in the bedroom, take a shower, return a few business calls, cancel my mom's therapy sessions, do a load of laundry, sort the kids' clothing, and empty a few boxes in the kitchen and the dining room. We still have some junk laying around in the dining room and the kitchen, but the house is really starting to get organized!

Krystal called to tell us that she had arrived at the hospital with my Mom. DH went to visit Mom with Micah after preschool, and I arrived there around 12:30. Dad was already there when I arrived, and DH and Micah left shortly thereafter. We had a nice visit with Mom. She was feeling well and looked great. We met with the nurse coordinator to try and get everything with Mom's medications straightened out. We also asked to speak to her doctor to try and determine when they plan to release her.

We had one funny moment today - the nurse coordinator was asking Mom questions, and I misheard (I thought she was asking how old Mom was and I answered "65" - it was actually a totally inappropriate response). Dad and I laughed...it reminded us of Mom in the emergency room yesterday - the doctor was interviewing the patient in the room next door (so much for patient privacy/HIPAA, right?) and Mom could hear all the questions. He would ask her how old she was, and Mom would answer. The doctor would ask about the woman's pain, and Mom would answer that she didn't have any pain. We were laughing, because each time we tried to explain to Mom that he wasn't talking to her, she kept asking "Well, who else is he talking to?"

I had to call and cancel our massages (again). How disappointing! Mom and I had been looking forward to our massages tonight. As fate would have it, Mom did end up with a bit of a massage. While we were there, an oncology massage therapist came by and offered a hand and foot massage to Mom - it is a service they offer on the oncology floor! So while it wasn't the massage we had planned for today, it was a nice bit of relaxation for Mom.

At 4:00, we had a visitor...Edna, a possible caretaker for my mother. We sat and chatted with her a bit, and she seems wonderful. She used to work for my mother's boss for many years taking care of her father, and every time I have spoken to her on the phone, she just has this warm voice that immediately makes me relax. I almost feel like she is giving me a great big hug and handing me milk and cookies! When she walked into the room, she had a huge smile on her face, and immediately came over to see Maya. She clearly adores children. We talked about our needs and our home environment, and she says she would like to try working with us. Her availability may not match up, but we are going to try working with her on Mondays, and perhaps add hours if it works out. My Dad left and drove Edna home (she lives right near my parents' house).

I stayed with Mom for a while longer, and then I headed out to a nursing home to visit my friend's grandmother, Della. My mom had been hoping to visit her today, but this hospitalization delayed our plans. My mom is hoping to go visit Della next Tuesday if she is out of the hospital by then. I had a lovely visit with Della - she had a big grin on her face when she saw Delicious, and we had a fabulous visit. I called my Mom afterward, and she was so glad we were able to go see Della.

When I arrived home, I found dinner waiting for us. Our friend V brought over dinner for us - chicken, vegetables, potatoes and brownies. We had a great dinner, and it was so nice to be home in a clean house. My friend H came by for a visit around 7:15, and we all hung out together for a few hours. We did sit down and watch Glee - Micah just loves the show! They did a dream sequence with the "Make Them Laugh" routine from Singin' in the Rain, and Micah was HYSTERICALLY laughing. It was so funny to see him amused by the routine. I'm amazed by how sense of humor develops. I don't think he understands enough to really appreciate the routine, but yet the playfulness of the routine and the faces and the falling just tickled his funny bone, and he couldn't stop laughing. My Dad has decided to bring over some of his videos of Broadway routines to sit and watch with Micah - I bet he'll love it.

H stayed and hung out until 9:15 or so, and then she headed home for the night. She got to see the house, but I don't feel like we really had much time to just chat. Hopefully we'll catch up more next visit.

Both kids went to bed easily tonight. Maya has woken up 2x tonight, but both times all she needed was her pacifier and she went right back to sleep. I've been so amazed by how much Maya has been growing recently. She is sitting and playing with toys, she can take her pacifier and reinsert it herself, and she is just so alert! I love that just a few weeks ago, she first learned to suck a pacifier, and now it is a permanent attachment. Micah, too, is growing up so quickly. His language skills seem to be developing by leaps and bounds. He is often using 2-3 word sentences. I love how he makes up words, too. "Say cheese" for camera, and "Apple poon" (apple on a spoon) for applesauce. He asks for cake every night now, and he bangs on the gate to downstairs yelling "PLAY!" when he wants to go down and play with his toys. He goes in to see "Mimi" all the time, and he is constantly asking where the baby is. He loves to give hugs and kisses, and he is just so sweet. I cannot believe how quickly my babies are growing up. Micah turned 23 months on the 14th...next month he'll be 2 years old! Amazing.

The Other Shoe

2010-11-15T22:32:00.002-05:00

Perhaps the other shoe has dropped. Every day, my mother tells me that things have been going so well that she keeps waiting for the other shoe to drop. Me, too. Perhaps today it did drop.

Mom had a really rough night last night. She was up all night with a headache and needing to go to the bathroom every few minutes. She seemed a bit weak, and I was definitely concerned. I sent an email to her oncologist to inform him about her cough and her headache. At 7:30 this morning, there was a knock on the door - the home health aide from the agency showed up one hour early. She looked like she was about 12 years old, and I was really irritated that I was unable to sleep because she showed up early. She sat out on the couch while my Mom napped and the kids slept.

Around 8:00, the house started to come alive. Micah woke up first, and I sat him at the table and made him pancakes. Maya woke up next, and I had DH spend some time with her before I nursed her. My Dad got up and showered, and by 8:45, my Mom was waking up, too. I sent the caregiver in to help get her ready. She was clearly inexperienced...she had a very long list of all the things she did not do (like transfers from the bed or to the wheelchair or commode), so I ended up doing all of that this morning. She did manage to get my mother bathed and dressed (but I had to run in and explain a whole lot of things to her). I can say that I was relieved to let her go after a few hours.

I became worried about my mother when there was blood in her stool...and shortly thereafter, her nose started bleeding. The home health nurse was present and drawing her blood, and we were waiting for PT to show. We had been told by the doctor to call if we saw any signs of abnormal bleeding like nose bleeds, so I gave him a call. As I suspected, he told us Mom would need a platelet transfusion again. We then learned that they expected us to drive to their office to pick up a prescription. Then we were supposed to drive to a lab to have her bloodwork done for type and cross (and wait an hour or so). Then we were supposed to drive to the hospital for the transfusion.

I explained that all that traveling would be a hardship on Mom. They were not sympathetic - all they said was that the transfusion was important and I should want her to have it. I tried to explain that I did want my mother to have a transfusion, but that it would be logistically impossible to jump over all those hoops with her. I asked if the blood the home health nurse drew would work, or if the hospital could draw blood when we got there. They kept insisting that there was no way to do all these things in one place. Finally, they agreed that Mom could get the platelet transfusion if she went to the ER to get admitted, and she would be released after a few hours.

Mom did not like the idea of going through the ER, but when I told her our options, she agreed that the ER route seemed the easiest. We were supposed to wait for them to call us when a bed was available, but after 2 hours, we decided to head in to the ER. When we arrived at the hospital, Mom got nauseated and started to vomit.

Because she wasn't feeling well, they did a CT scan to check for brain bleeds. Good news - no bleeding! They told us Mom had a fever, and the CT scan picked up a sinus infection. They drew some blood cultures to see if Mom had a blood infection, and they expressed concern over possible meningitis. Mom's hematologist and her medical oncologist are working together to manage her case. Both have privileges at the hospital down here, but the hematologist is the lead. They decided to treat Mom with broad-spectrum IV antibiotics. Because of the infection, she was admitted for observation. They are giving her platelets, they decided to give Mom a shot to boost her white blood count (her oncologist was initially against this because he thought it might trigger the cancer cells to grow, but the hematologist felt her white blood count was too low to fight off this infection, so they eventually worked out a treatment plan), and they will monitor her there to make sure she recovers well. We are hopeful that she will be released on Wednesday.

Dad and I stayed with Mom until almost 8:00. We made sure she got dinner, and we think (well, we hope) that they have her medications sorted out. She is in a nice private room on the oncology floor. Her nurses seemed nice, and we decided to hire a caretaker for overnight so Mom would not feel alone or scared. Krystal will meet Mom at the hospital in the morning, and Dad and I will return as well. We had to cancel her therapy and our interview with another caretaker, but we hope to do all that tomorrow.

Dad and I got home around 8:45, and so far both children are in bed. Anyone want to bet about whether we actually get to sleep through the night? I say the good money is on screaming children overnight!

The Break-In

2010-11-15T04:06:00.002-05:00

Damn - lost my entry again. I just entered the entire thing and the system glitched! That makes me crazy. Here is the short run down:

Mom was up at 1:30, 3:30 and 7 last night - rough night.
The kids slept until 8.
I took Micah to swim class at 11.
While I was out, Mom's co-workers came to visit. One brought couscous (thank goodness - my Mom has been talking about it all week). They also brought beet salad and a fruit basket. Thanks!
She had polished off 2 bowls of couscous by the time I got home.
Micah sat at the table and joined them for lunch.
Family friends arrived as they were leaving - they brought a defrosted kugel and a babka.
Two other friends arrived next for a visit.
Mom did really well with the stream of visitors.
Micah and Maya were napping, and Mom went back for her nap a little after 3.
I took a brief nap around 3:30 while waiting for one of mom's childhood friends and her husband to arrive, and Dad went to the store.
They did arrive...and ended up letting themselves in and walking through the house while all of us slept!! They left a babka with a note for us...we felt terrible that we missed their visit. We do need to start keeping our door locked, though.
We had dinner at 6 - mostly leftovers. Dinner conversation sounded like this: Can I have some couscous? You have a bowl in front of you. Oh. Can I have ice cream? After dinner, Mom. Okay. Can I have more couscous? Sure. Do I have more couscous? Yes - right in front of you. How about that ice cream? Mom, the rest of us are still eating and there are meat dishes on the table - can you wait until we're done with the meal to eat the ice cream. Sure. Can I have ice cream? Mom - remember, we have to wait until the end of the meal and I promise, you'll get ice cream. Right. Can I have couscous?
Mom's burglar friends who broke in earlier called to say they were still in the area, so we rounded out our night with a visit from them.
At 8, Mom headed back to her room, and we had a meeting with the architect.
We finally selected a contractor for our renovation - we hope to sign the contract tomorrow.
Mom has been up all night not feeling well...headache and nausea. We're a bit worried about her. Not sure if this is brain swelling, or eating too much, or the change in medications, but it isn't a good night here
Maya just woke up at 4:30...she is screaming, too.
DH forgot to give Micah his reflux medication - so I suspect he'll be up screaming in the next hour, too.

Fun night in our household.

Amends

2010-11-14T03:11:00.000-05:00

My mom's illness has taught us all so many things. We've dealt with the frustrations and idiocy of "the system" - insurance companies, and protocols, and rules and regulations that fail to consider the patient. We've had to battle to allow Mom to see her grandchildren, and fight to allow her the dignity of using the commode, and fight to have her pain addressed.

We've also learned about kindness and generosity, and we've learned that life is precious. We've experienced kindness from so many along the way...the staff at the hospital, the strangers we met waiting in the lobbies, the lady who randomly gave me an outfit for Maya that she had laying around, and from so many friends and family. We've depended on the generosity of so many - lifelong friends and family, those we haven't seen in years, and people who have recently entered (or re-entered) our lives - for food, for support, for their time, for their assistance with our children, and for their companionship, morale support and visits.

All of this has forever changed us - it has taught me to be kinder and more considerate of others, to never pass up an opportunity to offer solace and support. It has taught us to value every moment, and consider each day a precious gift of time. It has taught me that you never know when the last time your "normal" will suddenly be a thing of the past.

Today, Mom and I were talking about making amends. Some people make amends because it is a step in the recovery/healing process. My Mom is thinking about amends as part of the dying process. She has apologies she wants to make, regrets she wants to settle, and hurt she wants to express. In her head, she is making that list...and trying to figure out how to tackle each item. Some days, she has the best of intentions...but she has difficulty finding the words.

As I've sat down to write tonight, the words from the Tim McGraw song "Live Like You Were Dying" keep popping into my head...is it possible to live each day as if you were dying? To live it to the fullest, without regrets? Is it possible to make amends now, before we have any reason to worry about running out of time to say what we need to say? Amends are a challenge...even when you know you are running out of time. As I examine my life, I wonder what my regret list will be...

The entire house slept in this morning. After Mom's 1:30 wake up, she did not move a muscle until 8:30! I was the first one awake in the house. I got up, unlocked the door for Krystal, started preparing breakfasts, and waited for everyone to wake up. Almost precisely at 8:30, the house started to wake up. I gave my Mom her morning meds, Krystal arrived, and Micah and Maya greeted the morning. My father helped get both children out of bed this morning. After getting breakfast on the table for Mom and Micah, I nursed Maya.

We had a lazy morning...breakfast, snuggle time, tv time. After breakfast, Mom went back to her room to get ready for the day, and I did some cleaning. DH woke up and he decided to take Maya with him to services. Micah stayed here...and watched Sesame Street.

My mother's manicurist arrived right at 11:00, bringing egg rolls! My mom has been so excited for these egg rolls. She gobbled up 3 or 4 almost immediately. My mom got a manicure and a pedicure first, and caught up with her. By 12:00, I was working on giving Micah lunch. By 1:00, Micah was asleep, my mom was down for a nap, and DH had brought Maya home...also asleep...and I was in the midst of my manicure/pedicure. Mom also wanted Krystal to have a bit of pampering, too, so while Mom napped, Krystal had her nails done, too. There was a full hour of quiet in this house...with everyone asleep or being pampered. I think it was as close to heavenly as I've seen in a long time.

The manicurist left around 2, and I spent some time snuggling with Maya. Unfortunately, I received a call from our massage therapist...she had to postpone until Tuesday because her sister went into labor. I was disappointed, but how can I be sad when there is another baby on the way?

Family friends arrived around 4, and Mom and Micah woke up for a visit. We had a great time catching up with them, and the kids were behaving fairly well. Micah took his pants off...but hey, it is just a phase, right?

My brother, SIL, Paige and Peyton arrived next. We had a great time with them! Micah could not get enough of playing with his cousins...they ran through the house chasing each other, they went downstairs with DH to play in the basement and watch movies, and I think he spent the entire time grinning from ear to ear and shrieking with delight. The girls took turns holding and kissing Maya, and we had a lot of fun. Mom needed a few breaks from the noise, but we all ate dinner together (Ledo's pizza, topped off with the Milky Way cake from last night). Ann - it was unanimous - the cake was decadent and delicious.

Dinner was a bit amusing...different children throwing food, and Mom begging for dessert from about 5 minutes into the meal. My brother could not believe Mom's obsession with dessert...he kept telling her to wait until the kids had finished their meal. I think the entire conversation revolved around when Mom would be allowed to eat dessert. Micah seems to be taking after his Grammy...but while she screams for chocolate ice cream, Micah's new favorite word is "cake." I think he screams cake every time he walks into the kitchen, and if he had his way, he would switch to an exclusive cake diet.

After dinner, the kids resumed playing, and Mom sat and talked to us a bit. Around 8:00, she was ready to head back to her room, and my brother, SIL and the girls started to head out for the evening. Krystal got Mom ready for bed and then left for the evening. I worked on putting Maya to bed while DH put Micah to sleep. Maya finally fell asleep around 9:30, and at 10 I went in to give Mom her pills and put her to sleep.

Dad, DH & I retired to the living room to watch tv. I dozed off for a bit, but Mom woke up at 1:30 and needed me. It is now 3:00, and DH is snoring on the couch next to me. I'll have to pump before bed, and then we can call it a night.

Some days, I really think about what life was like before all of this happened. My life was very different in May...I had a dog, I had a Thursday night date night, and I had a healthy, young, active Mom who did so many little things to make my life easier and make me smile. We shared hobbies and jokes and loved our time together. I loved watching her forge a relationship with my son, and I depended on her in so many ways. I know this is selfish, but I miss being able to count on my Mom to run and do for me...to babysit the kids, to be my sounding board, and all those little things that were my normal. At the same time, I look around at this new life we are building...it is challenging, but it has so many amazing benefits. I have my Mom around all day long. My children have a unique opportunity to live with their grandparents and forge a different kind of relationship with them. We have so many opportunities to see and spend time with friends and family, and we have been given a chance to reconnect with so many. I hope that I can take advantage of this time together and cherish every moment that we have.

Anniversary

2010-11-12T23:35:00.004-05:00

Four years ago today, DH and I were celebrating our wedding. It is hard to fathom all that has happened in the past four years...we have moved three times, traveled to Africa, had two children, and now we are dealing with my mother's cancer. DH has been an amazing support through all of this...with the children, for me, and for my entire family.

It cannot be easy to live in a house with his in-laws...and yet, he did not even hesitate when I suggested we do this. To be honest, I did not really ask him. I just told him what I thought needed to be done, and he simply said "then we'll make it happen." He just knew that I needed to be there for my Mom and our children, and he saw that this was the only way. So, for that, and everything else you do, DH, I thank you.

Today was not a typical anniversary celebration type of day. DH and I had no plans together, and we had already decided not to exchange gifts. Normally, I would have tried to do something special or nice for him...and I just did not have the bandwidth to even think about it this year.

I woke up just before 7 with my mother this morning. I gave her medications, and a bit of granola, and asked if she minded resting in bed for another hour and a half until the kids woke up. She said she could listen to her audiobook, and I headed back to bed to nap for a bit.

Maya woke up around 8, and I took her out of her crib to nurse her. DH went to get Micah out of bed, and around 8:30, I came out of the room with Maya. Betty arrived, and we decided that things were not working out - it just was not a good fit for either of us.

Betty seems to prefer order, and wants the time to do her job completely and thoroughly. She is a highly competent caretaker, and I think she is used to working in a more controlled environment. I think she is a perfectionist - she just wants to do her job right and to the best of her ability, which means doing her job in a certain order, on a certain schedule, in a certain way.

Our house, however, is filled with tumult...we have 2 young children, DH and I work from home and my father is retired, there are always friends and babysitters and other people in and out, and we function at the whim of therapists, classes, babysitters, doctors and clients. Each day is different, our schedule is constantly evolving, and it is certainly always an adventure. I am sure that the chaos will calm down a bit once we settle into more of a routine, but for now, hectic probably does not even begin to describe our world. I think that it must be a difficult situation at best for anyone, and there is a lot of pressure to respond to changes in scheduling and timing quickly, and that often means doing things as well as can be done within the time constraints now and finish it right later.

When Betty left, I contacted Krystal. While we waited for Krystal, I got my mom up into her chair and gave her breakfast. Krystal arrived at 9:30, and got Mom ready for therapy. I have to say, I was so relieved when Krystal walked through the door. I gave her a big hug, my eyes welled up, and I felt my entire body just...relax. I knew we would be okay today, and I knew that Krystal would handle things. It is hard to find someone to trust, and I just trust Krystal to be on top of everything. She seems to understand my priorities, she has a young son herself, and all the chaos and tumult of our home does not phase her at all. Every day, I think how lucky we are that she was assigned to my mother at the nursing home.

My Mom had a visit with the home health nurse this morning (we got her bloodwork back - her platelets and white blood cell count have dropped even further), and then she had an OT appointment at 9:30, followed by a PT appointment at 10:30. In the middle of all of this, our landlady showed up with the plumber to fix a few problems (they were unable to fix the leak from the dishwasher). Then, our organizer arrived at 10:30 - and she finished putting our kitchen in order!! What a relief to have that done. Another old friend also arrived around 10:30 with a wonderful Shabbat dinner for us! It was fantastic to see her again after all of these years. She had a nice visit with Mom.

I spent most of the morning taking care of Micah and Maya and arranging to interview a new caretaker. At 12:00, I left for the day...I was supposed to have lunch with a friend, but I ended up having to cancel. I received a call about a business opportunity, so I went downtown for a meeting. My father came home to watch the kids while DH ran an errand (he picked up a desk for us to use here from a storage unit), and when I left my father was chatting with our friend. Krystal took my mom back to the room for a brief nap, fed her lunch, and got her dressed for the day.

My meeting was fantastic - this was a former client who had a new project and he said he was looking forward to working with me. We will work out the specifics over the next few weeks, but he is completely aware of my home situation and said that he is willing to be flexible and understanding! I'm relieved...I got another email today from a different client looking for a project next month, so maybe I will be able to keep my business alive.

While I was at my meeting, the occupational therapist/vision specialist conducted a home visit. She gave us a list of recommendations, did a bit of therapy with Mom, showed Krystal a few exercises, and made a few recommendations for other things we can do to help Mom. I think it was a successful visit, and we are working on implementing her recommendations this weekend.

One of my mom's childhood friends arrived in the afternoon, too, for a visit with Mom. Her husband and my father took a walk to the store, DH watched the kids, and Mom and and her friend spent the afternoon talking. I arrived home around 4, and Maya had been asleep on Mom's friend for two hours! Mom had just gone back to her room for a nap, and they were getting ready to leave. I was sorry I'd missed the visit.

When I arrived home, I was greeted by the smell of chocolate cake. I realized that DH had taken the time in the midst of the insanity...to bake us a heart-shaped anniversary cake! I couldn't believe he found the time to do that...it was far more than I even considered. Micah was being cute...he stole my nursing cover and wore it like a toga!

We woke Mom up from her nap around 6:00, and we served the delicious dinner...brisket, couscous, stewed fruit, carrot kugel - it was perfect. We decided to hold off on serving her dessert (a milky way cake) until tomorrow night when my brother, SIL and the girls come to visit. Instead, DH served his cake. Micah was a chocolate fiend! He was covered from head to toe in chocolate (and when DH put a second piece on his plate, he turned his back...and Micah stole it!).

After dinner, Mom watched the kids for a bit and did a few of her exercises. DH and Dad took charge of the kids while I worked on the mountain of dishes. We will be hand-washing this weekend since our dishwasher is not working. What a pain in the neck!! Around 8:00, Mom headed back to her room with Krystal. DH and I then put the kids to bed - he took Micah for a bath and I took Maya. Much to my surprise, Maya went to sleep a little after 9, and has stayed asleep. DH had to go in one time to "plug the hole" (reinsert her paci when she woke up crying). I sure hope this is a new trend!

After we got the kids to sleep, I went in to talk to Mom and Krystal for a bit. I took time to read Mom the blog and your messages. Krystal finished with Mom at 9:30 and headed out for the night. She'll be back again Saturday and Sunday. I am not yet sure what we will be doing on Monday (we have an interview set up with another caretaker), but we've got the next few days covered.

I ended up talking to Mom until 10, and then I gave her pills and set her up for bed. I came out and watched tv with Dad and DH, and must have dozed off on the couch for an hour or two. My Dad woke me at 1:30 to help Mom, and I've been awake ever since. It is now 4:30 am, and I'm hoping to clean a few more things before heading to bed.

I cannot WAIT for tomorrow (Saturday)! Mom and I are having a day of pampering, and she has been talking about it all day today. We have a manicure/pedicure set up for both of us at 11. My brother, SIL and the girls will be coming to visit and staying through dinner, and then we have a massage therapist coming to the house for us in the afternoon. I hope to end my day all relaxed for a change, and I hope Mom is feeling better, too.

Fabulous

2010-11-12T03:49:00.003-05:00

I get a lot of messages and emails from people telling me that I'm "amazing" or "fabulous"...and I have to say, I don't understand that. I'm just a person with a sick mother who is doing what needs to be done. I love my Mom...and I know that in a heartbeat, she would do the same for me.

So many of you ask how do I do it...well, as a friend wrote to me tonight, "How can we not?" I think that struck a chord with me...every day, I'm just doing what needs to be done to get through the day. How can I not do it? How can I not care for my children or my mom? It isn't fabulous, it isn't amazing, it isn't even special...it is just life, and it needs to be done. I can't say I ever feel like I'm doing it well...but I'm doing my best to make it all happen.

I'm lucky - I've had an army of people helping me...I have the luxury of babysitters, a husband and a father that are very present, wonderful caretakers for Mom, and so many friends and family bringing food and helping whenever they can. Gives a whole new meaning to the phrase "it takes a village."

My day started early this morning - my mom was up before 7, a bit confused about the time. I have to say, for just a second I wished I had another hour and a half to relax...and then I pulled myself up and got going. Micah and Maya were awake early, too. My mom got up and out of bed and we ate an early breakfast together. I packed up a bag for the day, and started to get the kids ready. Betty arrived at 8:30, and she spent the next hour getting my mother dressed and ready for the day.

Megan took Micah to preschool today. I love that she sends me texts with pictures of Micah at his cutest throughout the day, like these:

I hate that I have had to rely on her so often, but we had to take Mom to the doctor's office this morning. Mom, Dad, Maya, Betty and I left for our appointments at 10:30. We first met with Mom's endocrinologist. Mom is doing well, and the doctor made some changes to Mom's medicine protocol. I expect her sugar levels will dramatically improve over the next few days.

Our next appointment was with the hematologist. My Mom's platelets had dropped again, and she will need increased monitoring. Her white blood count is incredibly low, too, so that is of great concern. He informed us that Mom will likely not be permitted to continue with her monthly chemotherapy...that was the biggest shock. We are worried about what this means for Mom long term. For now, they are holding off on a platelet transfusion until they see what happens over the next few days. She is having more blood drawn tomorrow, and we'll see where we are. In the meantime, her appointment went well.

We arrived home from our appointments and Mom had her second lunch and took a nap. Micah was napping all afternoon. We had to deal with our landlady about repairing the house (there is a leak in the basement now). Mom's speech therapy was after her nap, and the kids woke up and were playing all afternoon. Maya was difficult again at bedtime - I wish she would just go to bed! We have a full day ahead tomorrow.

Letting Go

2010-11-11T02:40:00.004-05:00

Just as I think I might have things under some semblance of control...G-d laughs again. My mom only woke once overnight last night, around 3:30 am. I helped her out and went back to bed. Thankfully, the children were good and slept until after 8:00. My mom woke up first, and my Dad got her some granola to tide her over until Betty arrived. Unfortunately, my Dad forgot to take my mother's blood sugar first.

I let Micah sit in bed a few minutes longer, and Dad said he'd get Maya while I helped Mom with her meds. Micah managed to sneak into the room...and steal Mom's applesauce. I ended up putting him at the dining room table with a spoon and some applesauce.

Betty arrived promptly at 8:30, and I did my best to get things moving - I had both kids awake, I fed Maya, I gave Micah breakfast, I picked out an outfit for Micah, and I made Mom's breakfast. I started to become impatient...Mom needed to be out to the table to eat her breakfast quickly so that she could be ready for her physical therapy appointment at 9:00. Unfortunately, it was almost 9:15 before Betty got Mom out of the room and at the table, and Mom ended up missing 30 minutes of her therapy appointment.

At 9:15, I realized that Megan had not yet arrived. I went to my phone to give her a call, and I saw a text from her telling me that she had a family emergency and would not be able to make it today. Dad had already left for the day, DH had a meeting, and I just did not know how I was going to get Micah to class and juggle everything else without more help. I tried in vain to get Micah ready and out the door on time, but it became evident that we were not going to make it to class today.

After Mom's therapy, she wanted to go back to her room for a few minutes to finish getting ready. At 10:30, her former co-workers arrived for a visit! They brought us fresh fruit and a bulghur wheat dish that looked delicious, and an adorable book for Micah. Mom sat and chatted with them for a while, and then there was a knock at the door. When the woman walked in, I was confused, because I thought Mom's occupational therapy was not scheduled until Friday. Turns out, she was there for Maya from the State infant/toddler program, and I had completely forgotten that she was coming.

We headed downstairs (with Micah, too) while my Mom continued her visit, and she did her evaluation of Maya. Maya is doing great (no thanks to the program). She is at or ahead of her milestones, and she has made significant progress with her sucking issues. We just need to improve her bottle feeding skills (she is still struggling with bottle nipples). We scheduled one more appointment, and then I think she will be released from the program. I did ask her about Micah and whether he should/could be evaluated more specifically for sensory perception issues. She did notice a few behaviors while she was there, and we discussed our family history with ADD, but I have a feeling they won't do much at this time.

After our appointment, I nursed Maya and took Micah outside to play for a while in the back yard. I then brought Micah inside to watch an episode of Sesame Street while I headed upstairs to prepare lunch for my mother. Maya was cranky, and my father arrived back home to try and help out for an hour or so. I sent him downstairs to keep an eye on Micah, and I tried my best to pacify Maya while preparing lunch. Mom and I had more vegetable soup, fresh fruit, and of course Mom topped off her meal with a bowl of chocolate ice cream.

I was struggling with what to feed Micah for lunch...so I decided to take the easy way out and I gave him a stick of cheese while he watched tv. After he finished the episode of Sesame Street, I gave him some crackers and fruit, too. Immediately after lunch, I put Micah down for a nap, and Maya, too. Just as I thought I was getting some down time, Mom's speech therapist arrived. Naturally, Maya woke up during the appointment, so she kept me occupied.

After speech therapy, Mom lay down for a nap. Micah slept for over 3 hours, and Mom slept for about 2 1/2 - 3 hours. I started to get a migraine, but Maya just would not give me a break and nap. I ended up getting a few phone calls...from Mom's doctors. We will be taking Mom to see the hematologist tomorrow to have her platelets checked again, and then they will decide if my mother needs to go to the hospital for a platelet transfusion.

While Betty and I were sitting in the living room, I made a comment about having a migraine and wishing I could take a nap. Betty then told me that I was not taking advantage of her ability to help. She is probably right...I'm used to doing things for my mother, and I'm not fully comfortable letting everything go yet. It turns out, she was quite insulted that I did not let her take out the trash yesterday to help me out. I tried to explain that the trash issue had nothing to do with me...DH is a little...crazy...about trash. He is a recycling nut, and he really cannot stand it when anyone else takes out the trash. It is just easier to leave it for him than for us to take it out - he will end up digging through the garbage later anyway, and I can't stand to hear the complaining about how it was done wrong!

Betty and I had a good conversation...she also pointed out that this morning I insisted on taking my mother's wheelchair to the breakfast table. That is when I decided to be honest with Betty - I'm frustrated that she takes so long in the mornings with my mother and throws off our entire schedule. I took Mom to the breakfast table this morning because she was 30 minutes late. I had specifically asked Betty to delay the morning washing routine (since she had just washed Mom thoroughly before bed) so that she could get to breakfast early and be on time for therapy, and Betty disregarded my request. I thanked her for how caring and thoughtful she has been with my mother, but I expressed my frustration that she can be a bit rigid and prioritizes doing things in a pre-set order over fitting activities around my Mom's therapy schedule. She kept insisting that my mother should be washed/bathed first thing in the morning, and I tried to explain that it was more important that my Mom eat breakfast no later than 9 because of her diabetes and medication restrictions, that therapy took precedence over morning ritual, and that it was okay if my mother needed to eat breakfast in her pajamas and dress and wash afterwards.

Betty did not seem to approve of that, and said that if Mom was going to eat breakfast in her pajamas, it should be in bed. This morning, my Mom explicitly stated that she preferred to eat breakfast at the table. We talked about the importance of therapy time, and Betty asked why we couldn't move it later. I said that I would certainly request a later time, but that for now, therapy was early, and that my Mom could not miss any more therapy time because of morning routines that could be done later in the day. Again, I pointed out that most of Mom's therapy was done in the bedroom, and there would be no real harm in doing therapy in her pajamas. I hope we settled things - I would like to rely more on Betty and let go, but I have to trust that she will get Mom to her appointments in a timely manner, even if it means setting aside her routines. I know that Betty's heart is in the right place, and I know that this is a learning curve for both of us.

Shortly after Betty and I chatted, DH and my father came both came home. Micah woke up next, followed by my mother. Betty got Mom up and to the living room while we managed the kids. Around 5:30, one of my Mom's friends showed up with dinner from a huge group of our friends. It was an incredible feast, and our refrigerator is now overflowing with food! We had cheese sticks and fried zucchini, salad, eggplant parmesan, spinach and cheese lasagna, fresh fruit, and cheese cake for dessert. Mom, of course, could not survive the meal without her chocolate ice cream! I think we have no choice but to eat leftovers all day tomorrow.

After dinner, Mom was a bit exhausted. Betty moved her back to the bedroom, and started their nighttime rituals. DH and I spent a little time with the kids. Micah was running around, he rode his tricycle in the garage, and he kept running back to see Grammy. My grandmother's friend called Mom tonight to chat. It was wonderful to hear her voice again...I haven't spoken to her in many years, but I used to call her house every New Year's Eve to wish my grandmother a Happy Birthday. They chatted for a bit, and it was bittersweet.

Micah and Maya hung out for a little while in Grammy's room. Actually, they were so cute together - Maya kept looking for Micah and grabbing handfuls of his hair, and Micah would cuddle close to her, say "baby" and give her kisses. Micah went to bed around 8:15...as he left the room, he said "bye bye, Mimi" to Mom - it gave her a huge grin on her face! Every time Micah has been seeing her door, he waves and says "bye bye, Mimi."

Betty left at 8:30, and my mom rested for a while. Micah went to bed easily, but Maya was quite difficult to put down again tonight. I went in to see my Mom at 10:00 to give her medication and put her to sleep. She woke up again at 1:30, and hopefully she is now back down for the night. Another good day...but I sure hope Megan is able to return to work tomorrow.

Searching for Normal

2010-11-09T23:35:00.003-05:00

Rough night, but good day. My mom was up at 1:30, 4:30 and 7:30 last night. Betty arrived at 8:30, and Megan at 9. I had another rough day getting DH to get up and help with the children again, but my Dad was doing his best to juggle them while I helped my mother.

I took Micah to preschool today - for the first time in a few weeks. He seemed to be having a great time, but he was very clingy - he did not want me to go more than a few feet away from him. After class, we returned home for lunch. I had just missed the nurse, who came to check my mother's blood pressure and draw blood.

Micah was not much in the mood for eating - he munched on an apple, and I made my mother a tuna fish sandwich. My Mom told me that she spoke to her co-worker and friend, and that she planned to come by with couscous. My mom has been so excited that she asked me about 100 times today if I knew what time her co-worker was coming by to visit. I think she wanted to save her appetite for the couscous.

Patricia was here cleaning the house, and she was a huge help - she managed to put a lot of things in order and help us with the unpacking, too. Megan took Micah out to run an errand, and I stayed behind trying to get a few things done around the house. After lunch, we took Mom back to her room for a bit of a nap. She made some phone calls and rested. Micah and Megan returned home, and Micah also went down for his nap. Megan spent most of the afternoon keeping track of Maya while I made a schedule for my mother, took care of a few appointments, returned some calls and emails, and did a bit of cleaning and unpacking.

Another friend of my mother's arrived around 3:00...with vegetable soup for us! My mother has been looking forward to this soup since Saturday, and it certainly delivered. She came in and I gave her a tour of the house, and brought her back to chat with Mom. After a while, Betty brought Mom back out to the living room, and Dad arrived home, too. We all sat around chatting, and it was a nice afternoon. My mom's friend offered to help me get a bit more organized in the kitchen...and I gladly took her up on the offer! We pulled out duplicate food items, moved things around, unloaded 2 more boxes of food, and she helped me cull through some of the items to make more room in the kitchen. When we were finished, I definitely felt as if we'd made a dent in the kitchen. I think I can get the kitchen in order within the next few days.

Around 5:00, the occupational therapist showed up to work with my mother. They did some exercises and evaluations for almost an hour. While they were working, I reheated the soup, and Mom's friend stayed with us through dinner. The soup was DELICIOUS, and it was so nice to not have to think about dinner. Micah skipped dinner and watched Sesame Street. He had actually eaten a ton of peanut butter, so I was fine with that. He was singing along with Elmo's World, and he was just adorable.

We ended dinner with apple pie and chocolate ice cream (of course). We got a call from the nurse who told us Mom's bloodwork indicated that her platelets are low again. She will likely need another platelet transfusion, and we are going to see if her hematologist down here can do it instead of returning to the hospital.

Mom's friend left after dinner, and we spent time with the kids hanging out. Micah drank another smoothie that another friend had left behind...and he cried when it was all gone. Around 8, Betty took Mom back to the room to get her into her pajamas. DH, Micah, Maya, Dad and I watched Glee, and Micah was singing and dancing. He cheered "YAY!" at the end of each song. He was being so cute as he hugged and kissed us all, and he kept running back to check on Grammy - giving her kisses, signing (and saying) "I love you."

Mom decided to stay in bed for the evening. Betty left at 8:30, and we left Mom in the room with her audiobook to relax. DH bathed Micah and put him to bed while I worked on getting Maya to sleep. Maya finally crashed and we placed her in the swing for a bit before moving her into her crib. So far, so good!

I returned to Mom at 10:00 to give mom her nighttime meds and put her to sleep. Luckily, both Micah and Maya were down for the night - I'm hoping for a good night tonight.

Today was much calmer...I got a glimpse of normalcy again, and I think that we will get into a routine in another week or two. It has been so nice having my mom around us, and I love seeing her and my father interacting with the kids. Micah is finally getting comfortable with Mom again...he used to be so attached to her, but with all this time away (ever since she got sick in May), he just has been more distant from her. But lately, he seems to be paying more attention to her again, and he runs down to her room to check on her and say hi. He also seems a bit infatuated with Betty.

I'm hoping for a quiet night!

Insanity

2010-11-08T23:19:00.003-05:00

Today was insane. I believe the definition of insanity is doing the same thing over and over again and expecting different results. That must be what I am doing...I keep thinking that somehow, the kids will cooperate, that everyone will nap at the same time, that the phone will stop ringing, that my fairy godmother will wave her magic wand...and that I will be able to magically tackle all of the tasks on my list while in a dress and singing to my talking animal friends. Okay, maybe not the magic wand or fairy princess part, but I do keep thinking I'll finish my "to-do" list. I somehow thought that by coming home, life would settle down and become...maybe a bit boring. I thought with caretakers and babysitters I'd have hours of time to myself...time to rebuild my business, time to rest, time to catch up on the DVR. Apparently, I'm delusional, because I didn't even have time to eat today!

Mom slept through the night last night...and so did the kids! Of course, I was up every hour or so checking monitors at some sound or another, mostly because I just couldn't believe everyone was sleeping so soundly. Micah was the first one awake at 7:00 am. He spoke a few times (sounded like he was saying hi to his stuffed animals and asking for Elmo). I left him alone - I knew the minute he went screaming down the hallway with his toddler exuberance, there would be no more sleeping people in the house. By 7:30, Maya was making noise. I went in to get her and nurse, but I heard Mom calling for me at the same time. I asked DH to grab Maya while I went to my mother. I checked her blood sugar, gave her meds, got her some juice and water and a little granola to hold her until breakfast. I then went back to get Micah out of bed and nurse Maya.

I have to say, morning is NOT DH's strength. I'm not a morning person, but he is just terrible in the mornings. He gets snappy and unhappy, and he does not understand why he should have to wake up and do...well, anything, most mornings. He grumbled something about Maya being cranky because I made him get her out of bed too soon, and something about Maya waking Micah (all wrong...he was just in the midst of a delusion that if I had not ruined his morning, the kids would have slept until noon).

I ran around like a crazed lunatic...trying to nurse Maya and make breakfast for Mom and Micah and search for Maya's clothing (her basket of clothing has gone missing). Both of my parents had time to spend with Maya:

The phone was ringing off the hook with questions from nurses and the phone company and health care equipment companies. Betty arrived at 8:30, and I tried to take some time to give her a brief introduction/orientation while taking care of two screaming children. In the midst of all the madness, my father ran to the store...and I have no idea where DH was. I emptied the dishwasher and tried to empty a few more boxes in the kitchen and clear off the counter so that I could do some real cooking. Megan arrived at 9, and she helped get Micah ready and off to his class.

While they were out, I started to work on cleaning up while Betty and my mother got to know each other. Unfortunately, Maya started screaming, and I had to divert my attention back to her. Then Betty had some questions for me about the routine and where things were located. Next thing I knew, there was a knock at the door...and the guy from the wheelchair company was here to see my mother's chair. I have to say, he was not such a nice man. I asked him about my mother's wheelchair and our impression that it was supposed to recline, and he nearly blew a gasket. He said no one told him about any reclining and if we didn't like the chair, he'd return it and wouldn't get us a new one (knowing full well he is the only person our insurance company authorizes to fit Mom for wheelchairs). We must have spent an hour or two discussing her wheelchair. In short, he basically told us we were S.O.L...they ordered this wheelchair, and there was no way to change the order.

After he left, it was time for lunch. My mom wanted peanut butter on a bagel (with a side order of pie and ice cream). Micah wanted...to throw his food on the floor. He got upset when he saw Grammy's cup with a straw and he wanted one, too. I gave him a peanut butter and jelly sandwich, and he ate some of it. Right after lunch, Micah went down for his nap, and Maya was dozing on and off. I started to do some more cleaning...but the phone was ringing. We had all kinds of health care professionals calling us to make appointments with Mom and to be honest, my head was spinning and I didn't have a chance to write it all down. Perhaps the best call of the day...a former client with a new project for me. I'm hoping that I can get things together in the next week and get back to working, because I really want to spend some time catching up on my work.

Suddenly, it was 2:00 pm, and my mom was thinking of taking a nap. She had mentioned that she also wanted to take a walk since she never made it outside yesterday. We decided that if we did not go out for our walk immediately, it was unlikely to happen at all. So, Betty, Mom and I bundled up and went for a short walk through the neighborhood.

I think we were gone for at least 30 minutes or so. When we returned, our friend was there waiting for us!

Mom and her friend sat and chatted and caught up while Betty did some more unpacking and organizing in Mom's room. Just as I was getting ready to do some more unpacking in the kitchen, the delivery guy from the medical equipment company arrived. He needed to deliver a lift for Mom, and fix her bed and table. Not surprisingly, it turned into quite an ordeal. I think he was here for nearly two hours. Every time he thought he "fixed" the bed, we showed him that it was still broken. He was quite irritated, and after 3 attempts at fixing the bed, he finally replaced it. We had a minor snafu with the lift...first, we thought it wasn't covered by insurance, so we nearly refused the delivery again. Once we clarified everything with the insurance company, he dragged it inside. As he was demonstrating how it worked...we realized it was broken! He had to drag that back outside again. Mom received a replacement table, too. By the time he left, he was quite irritated that the repair on Mom's bed had taken such a long time. He and Betty were not getting along, so I ended up having to run in and mediate. At least he fixed the bed before he left!

Right after the guy from the medical equipment company left, Mom stretched out for a nap...only to have the woman from physical therapy come by at 4:30. They had a short session, but it seemed productive. Mom will have physical therapy three days each week - Monday, Wednesday, and Friday at 9:00 am. She was tired, but she seemed excited to start her therapy. In the middle of all of this, Megan left for the day, and I went back to chasing two unhappy children while trying to observe Mom's therapy. Around 5:00, my friend and her daughter Becca stopped in for a visit. Micah and Becca played a bit, but Micah was NOT playing nicely. I ran upstairs around 5:30 (while DH monitored Micah) to check on Mom and start to make dinner. I had the baby in tow some of the time, she napped a bit, and then my father took her for a while.

Unfortunately, it was nearly 6:00 before I managed to make any real progress with dinner. I was busy hunting for pots and pans and trying to clear space and carrying Micah - it was a disaster! It also turned out that we were nearly out of a few of the key ingredients...we barely had any artichoke hearts, and we were quite short on the bulghur wheat. I searched the cabinets to improvise, and I decided that quinoa was close enough. Unfortunately, I forgot that quinoa takes about 20 minutes to cook. Despite everything, dinner tasted good...just a little different from the norm. Micah was unwilling to eat much...but he spent the evening sucking down a delicious smoothie instead. I figured it was a passable dinner...fruit and yogurt, right?

Mom was too tired to join us at the table for dinner, so we brought her dinner in bed. Immediately after dinner, she wanted ice cream and granola for dessert. It was about 8:15 pm when she was finally settling in for the evening, and she closed her eyes and napped for about 1 1/2 hours. I gave her evening medications at 10 and Betty cleaned Mom up and got her ready for bed by 10:30. All in all, I think our first day working with Betty was a success.

We did a bit more cleaning around the house. My father was trying his best to be helpful...but he decided to put my very expensive Calphalon pans in the dishwasher! So, now I'm going to be in the market for a new set of pans. I went in to cry to my mom briefly tonight...I just wish I had more time free to do what I need to do, and I wish that sometimes my father and DH don't do things to "help" like ruin my pots. His heart was in the right place...but my pots were in the dishwasher :(.

After the kids were in bed (DH finally got Maya to sleep and in her crib around 10:30), DH and Dad decided to work on assembling a few toys for the kids that have been sitting in boxes for far too long - a step stool, a bench and a toy chest. It was kind of fun to watch them working together. My father always loves putting that stuff together, and they seemed to do a pretty good job working together. I think Micah is going to be thrilled tomorrow morning!

My Mom just woke up briefly around 1:15. She was uncomfortable and needed to be repositioned. I'm hoping that she will rest comfortably and sleep through the night. I'm looking around and thinking that I might need to go back to unpacking - I don't think I'm going to have another quiet moment any time soon, and the cleaning lady is supposed to be here in the morning to clean. Right now, she can't possibly do much cleaning with all the boxes and mess! I'm so frustrated that I don't seem to be able to make any real progress. I know I would feel so much better if the house was in order and I could find the things I need. I don't know how, but I have to get the kitchen unpacked and my bedroom in order over the next few days. And I desperately need to find my contact lenses.

Uh oh...I think we're in for a long night. I was just getting ready to hunt for my pump, but Maya woke up crying. I think she is not going to go back down any time soon. I just asked DH to go in there...I've noticed that both kids seem to go down faster if he goes in during the middle of the night wakings than when I go in to cuddle them. I have no idea why, but it really makes a huge difference.

Tomorrow I've got preschool for Micah in the morning, and the cleaning lady. I think we have an appointment with the home health nurse, and I have no idea what other things I agreed to do! I'm supposed to go to a board meeting tomorrow night for a meeting, but I'm just not sure I'll be able to make it yet. And what I'd REALLY like to do is to get up, go pamper myself with a massage (I've even got a gift certificate I can use), a manicure, and a pedicure, and come home to a fully unpacked house and a prepared dinner, then head out to meet some friends to play mah jong. Perhaps next Tuesday....

Getting Settled

2010-11-07T23:26:00.002-05:00

I wish I took more time to jot down my thoughts throughout the course of the day...I keep forgetting to record so many things, and I feel like I want to grab on to every precious memory right now. Today was another good day. I love having my Mom home with us. There are definitely big adjustments (more people, caretakers, more people making messes), but being together has been...nice.

My mom woke up briefly at 2:30 am again last night. Her nighttime waking is never an issue - she usually just needs something quick and easy and then falls right back to sleep. Unfortunately, last night, both kids were awake and screaming all night. Maya has been extremely clingy lately, and just does not want to sleep unless she is tucked in close to me. Micah woke up around 4:00 am screaming, so DH went in to sit with him while I kept Maya close. Turns out, DH forgot to give Micah his reflux medication, so it had him coughing and hurting all night.

Once we finally got the children to sleep, all was quiet in the house until 8:00 am. Mom woke up first while Micah and Maya (and DH) slept. I gave her some water and her morning pills. We took her blood sugar, and I asked her if she needed me to start getting her ready. She said she could wait for Krystal, and asked me to bring her some granola to tide her over until breakfast. Lately, my mom is obsessed with the Costco granola. She had three helpings this morning before we even ate breakfast!

Krystal showed up around 8:30. I prepared breakfast for my Mom while my Dad ran a few errands, DH, Micah and Maya slept, and Krystal and Mom did their morning routine. I managed to unload the dishwasher and clean up a few things, too. Micah woke up next, and I brought him out to eat breakfast with my mother.

After breakfast, I realized that we needed to get moving. Micah had swim class at 11, and we had a simchat bat (a baby naming) at 1:00. We ran around trying to find our things for swim class. I successfully located the swim bag, Micah's bathing suit, and my bathing suit. I even managed to find a clean outfit to wear today! I again failed to find my contact lenses...that is my task for tomorrow. I could not find a clean outfit for Maya, so I ended up recycling the one she wore yesterday. She had fallen asleep, so I grabbed the outfit for DH to use later.

I love swim class - Micah has so much fun blowing bubbles and practicing his swimming skills. He was extremely excited to see Daddy up on the observation deck, too, and took a few "time outs" to wave and yell to Daddy. After swim class, Micah and I took a shower and got ready for the baby naming. DH and I had previously bought a gift...but could not find it in the move, so we ran to Target to get something small to bring until we find the "real" gift.

We had a great time at the naming. Micah ran around with two of our friends kids (Max and Sarah) and they had such a good time playing together. He is getting to be a really big boy, and it just amazes me. I ended up having a few fairly heavy discussions with a few of the other guests...a few of them have been through similar challenges and even the loss of a parent. I have to say, I shed a few tears, but it was also nice to know others who have been through the same thing.

We left a little after 3 and came home. My mom was asleep, and my parents had a nice day while we were out. Some friends came by and brought lunch (and left behind a smoothie for Micah). We put Micah down for a nap, DH fell asleep, and Maya and I snuggled and snoozed on the couch together. I woke up around 5:15, and realized we needed to get things ready for dinner. We decided to keep it simple...just hot dogs for dinner. My father ran out to the store to pick up some hot dog buns, baked beans, potato salad and sauerkraut. I ate veggie dogs, and we had an easy dinner together. Tomorrow, if I can get the kitchen in order, I'm going to tackle cooking a real meal. My mother has specifically request our special vegetable cheese and bean topped bulghur wheat dinner.

My mother was barely finished with dinner when she was asking for dessert - a slice of apple pie and some chocolate ice cream. After dinner, we retired to the living room. Krystal took my mom back to her room to change, and then she settled in on the sofa. Krystal left around 8:45, Micah was in bed asleep, and my Mom decided to stay on the sofa until her 10:00 medicines. I tried to get Maya to fall asleep in her crib - we even decided to let her "cry it out" for about 10 minutes, but that didn't seem to work. I brought her back into the living room to sit with us. We had recorded a show on national geographic on migration, and we sat and watched it this evening. Actually, the cinematography was fabulous! There was a segment on penguins, and DH called me back in the room to watch.

DH and I have a joke about penguins. On our honeymoon, we went to South Africa. There are lots of penguins in Africa, and African penguins are known as Jackass Penguins. I thought it was funny...so we started joking about using the word penguin instead of jackass. Calling each other penguins (and doing a cute little penguin walk to imitate the penguins) became our little joke. I even bought him a penguin afghan as a Chanukah gift that year.

While Mom was watching tv, Maya was being difficult and refusing to go to sleep. I ended up putting Maya on Mom's lap, and she sat there quite contentedly for a while. I took some time to do the dishes and clean up a bit, and I managed to put a few more things in the kitchen drawers.

At 10:00, we gave Mom her bedtime medications and put her to sleep. DH managed to get Maya asleep, and he put her back in her crib. No surprise...she started crying again. We gave her another 10 minutes to see if she would cry herself to sleep, but no such luck. DH went back in, flipped her onto her back, put in her pacifier, looked at her and said "You're okay. Time to go night night. Daddy loves you." She looked at him, got quiet, and he left. Much to my amazement, she stayed quiet and eventually fell asleep. I'm hoping we can keep her in the crib all night and she can sleep through the night.

Things seem to be going well for us. I am feeling free to leave, and we are slowly making plans. We have different therapies scheduled to start this week - Tuesday is physical therapy (here is a "small world" story - we were given our PT's name, and both Mom and I thought it sounded familiar, but couldn't place it. She called today...turns out, we DO know her - she is the mother of one of my brother's childhood friends, and we just didn't recognize her remarried last name) and Wednesday is speech therapy. We are going to a doctor's appointment on Thursday, too.

Rolling

2010-11-07T01:38:00.002-04:00

First full day at home...and I think things went extremely well! Mom slept well last night - she woke up only briefly at 4:30 am. I actually got a few hours of sleep, too. I took Maya to bed around 2, woke up with Mom at 4:30, and went back to sleep around 5:30 or so. I woke up a few more times briefly between 7 and 8 before waking up for the day. Krystal arrived promptly at 8:30, and my mother woke up shortly thereafter.

I gave mom her first set of pills, and then left while Krystal helped her get ready. I made breakfast for everyone...Mom, Dad, DH, and Micah. We sat at the table together, and it was a nice morning meal.

About 10 minutes after I changed Maya, I heard a loud explosion. Yes, she decided to poop in her clean diaper...AGAIN. DH always jokes that she likes a fresh bowl (for those of you who used to watch Ally McBeal, that is DH's nod to Peter McNichol's character, who used his remote device to flush the toilet BEFORE entering the stall because he liked a fresh bowl).

After breakfast, Dad went out to run some errands, and DH and Micah got ready to leave for services. Mom, Maya, Krystal and I spent the day together. I read Mom the blog, I made a few phone calls, we sat and chatted a bit.

The home health nurse arrived today to conduct the intake interview and start the process for Mom's services. Mom will have weekly blood draws and monitoring through this nurse, and she will also have physical therapy, occupational therapy, and speech therapy. In fact, the speech therapist called tonight, and we have our first appointment with him on Wednesday.

While the nurse was here, my brother arrived for a visit. He was able to stay for a few hours, and we had a good visit. We gave him a tour of the house, and he did some entertaining of Maya. While he was here, Maya decided to show off...and she rolled over from back to belly for the first time!!

She did it several times, in fact, with a big juicy grin on her face. My brother was a pile of mush for his niece, and my mom kept talking about her chubby cheeks and juicy smile. After our wonderful visit, my brother had to leave to go in to work for a few hours.

Shortly thereafter, we had an interesting visit from the neighbors across the street - they stopped by with cookies to introduce themselves! I've never had neighbors be that friendly before. I couldn't decide, however, if they were trying to figure us out. We moved in suddenly, we've had trucks back and forth, and delivery people with equipment, about 900 different cars in and out (not to mention the 4 cars we are driving), a nursing aide, a babysitter, and a home health nurse, so I can definitely understand their curiosity. They stayed about 15 minutes or so, and Mom had a chance to chat with them, too. I think they definitely asked a number of questions, but I tend to question people when they are so friendly! I'm not sure if I mentioned this before, but we learned the other day that our landlord failed to file the proper documents to make this a rental unit. I have a sneaking suspicion that our friendly neighbors across the street may have been the ones who reported her, but perhaps I'm wrong.

DH, Micah and my father returned home from their outings by 2:30 or so. DH immediately put Micah down for a nap (Micah was awake and chatting for over an hour), Krystal took my Mom to her room for a nap, and I managed to get Maya to sleep for her nap. DH disappeared downstairs (I assume he napped, too), and I surveyed the house. I'm not sure what my father was doing...probably in and out running errands. I knew that it might be my only chance to do some cleaning and unpacking...and I just couldn't. I was so tired and just sick of unpacking. I stretched out my legs on the couch...and crashed.

I heard Maya wake up, and I went to go grab her, but Krystal got there first. I am ashamed to admit this, but I let her take Maya. I knew it wasn't her job, and I just...didn't get up. I slept for 1 1/2 hours thanks to Krystal, and it isn't even in her job description to help with Maya. DH and my father were nowhere nearby, and without Krystal, I never would have gotten a nap today. I opened my eyes a few times and told Krystal I could take Maya, but each time she insisted she had her and to go back to sleep. And I did. I cannot even begin to thank Krystal for all of her help - she runs a little extra interference with Micah, she picks up and holds the baby when I need to help my mother with things, and she is always happy to help out. She has been unpacking and organizing things in my mother's room, and she has had so many great ideas for getting us set up. She has perhaps been one of the most helpful people to me over the past few weeks, and especially the past 48 hours. So, thank you, Krystal, for all you do. It is GREATLY appreciated.

By 4:30, I was awake again and starting to plan for dinner. My father arrived home at 5, and I sent him back out again to pick up food for dinner. We ordered an assortment of Italian food (pizza, ravioli and eggplant parmesan), and it was a nice meal. I set the table and got everything ready to go. We worked on waking my mother up from her nap, and I got DH up and asked him to watch Maya. My mother was very confused...she always seems to think it is morning when she wakes up from her naps, and somehow, even when we tell her that it is 6:00 pm, she cannot understand how it is not morning.

When my father got home with dinner, I put the food out and Krystal got Mom ready to join us for dinner. My father woke Micah up from his nap, and Micah was NOT happy about that. After grumping for about 10 minutes, he dug into dinner with almost as much gusto as my mother.

After dinner, friends came by with a feast for dessert...chocolate chip cookies, rugelach, apple pie, and maccaroons. We had a great visit - Micah was running around, they brought a beautiful gift for Maya, and we had a lovely evening. My mom went back to her room around 8:30 and our friends left. Krystal stayed a little while longer to help us get Mom ready for bed, and she gave me a few tips on helping my Mom. That has been invaluable, and I hope it makes things easier for us at night.

We decided to keep Micah awake until 9:00 for daylight savings in the hopes that he gets right back on schedule. Micah through a fit because he couldn't play with the "say cheese" (his word for camera). I need to get tempting items like that out of his reach.

Mom dozed a bit from 9 until 11 when I woke her to give her bedtime medications. She immediately fell back asleep, and I hope she sleeps soundly through until morning. Even if she wakes up once, I'm fairly certain she'll fall back to sleep quickly and sleep in a bit. I held her medications an extra hour tonight so that she can sleep later tomorrow morning.

We tried to put Maya to sleep at 8:30, hoping that she would start to fall asleep at a more normal time and that daylight savings time will just push her entire schedule a bit earlier. Unfortunately, no such luck. Maya has been asleep since about 8:40, but every time we put her down, she cries. She just wants to sleep snuggled close to someone. I wish I knew how to make her sleep in her crib, or anywhere but on one of us!

I think we are starting to get into a routine. We eat breakfast at 8:30/9, lunch at 12:30, and dinner at 6. It works for Micah, it works for Mom and her medicine schedule, and it is fairly consistent with the schedule she kept at the hospital. Of course, if you ask my mother, she'll tell you that I need to do a better job of creating a consistent schedule. She thinks it was very outrageous to serve her eggplant parmesan for breakfast, and she thinks I'm going to damage her stomach with such crazy foods. She also thinks I need to do a better job of getting her to eat at normal times, because she shouldn't have breakfast twice in one day. Yes, the confusion about time is a bit frustrating...no matter how many times I explain to her that she woke up from a nap and it was dinner time, she thinks I'm lying to her. It didn't matter that I reminded her that we had breakfast and lunch and that eggplant was dinner - she somehow believes that I forgot to serve her dinner and then I gave her eggplant for breakfast. Logic just defies this situation. My mother ended our 8:00 session tonight chastising me about getting the timing better for meals...but I think I'm going to stick with feeding her (and the rest of us) at 8:30, 12:30 and 6:00 (with an afternoon snack in there as appropriate).

So, if you are planning to join us for a meal...please understand that the timing is fairly important, and while we might be able to fudge things a little earlier or later, we need to keep things on schedule for her medications and for the sake of her time disorientation (that, and mom does NOT like to wait for food these days).

So, after today, I made zero progress on cleaning up. I did get to shower, but I still have no idea where most of my clothing is located. I also managed to sort my mother's pills into a pill container for the week, so that should also make things easier for us. I'm hoping to find more time tomorrow to focus on unpacking and getting organized. My goal is to have the kitchen, our bedroom and the rec room in passable shape by Tuesday. I'm counting down the days until our organizer returns...because I just don't think I can get this house in order without a ton of help, especially when I spend the day with a child (or two) attached to me.

I asked Mom tonight if she was glad to be home. She is...she says she loves the freedom of going from room to room during the day, and she is looking forward to taking a walk outside tomorrow. She is making plans to meet people for lunch in the coming weeks, and she is loving the time with the kids. Personally, I love having her home, too. I can see her every day and talk to her when I want. When she is sleeping or busy, I can do my own things. Best of all, I don't have to drive to the hospital and back every day.

This week, I am looking forward to a bit of freedom. I plan to leave and go out to take care of a few things I've been putting off. I'm looking forward to some "me" time, and I finally feel like I do not need to feel guilty trying to cram in time for everyone during the day. I also feel like I'm on a more normal schedule. It looks like I'm on track to get to bed around 2:00 am for the second night in a row! I think it will take us some time to fully settle into our routine, get unpacked, and lay new ground rules for living together.

Thanks for your good wishes! We are doing well.

Free at last....

2010-11-06T01:07:00.000-04:00

Mom is home. After almost 11 weeks (76 days), she is finally home. It isn't the home she left...it is in a new house, with different furniture, different decor, and suddenly more residents, but it is home.

Last night was a horrible night...between the move and the children, I was simply exhausted. I woke at 7:00 this morning because Maya was awake (my formerly "good" sleeper has become a terrible sleeper...either she has my genes, or it is just a phase). At 8:00, our mover showed up to find out that our phone lines were not working properly...and my babysitter, Christin, canceled on us. My father showed up at 10:00, and he and DH left to go pick up Mom at 10:30. I stayed behind to try and deal with some unpacking...but got worried when I realized that I was all by myself with two children for the day.

Luckily, "fate" intervened...my friend called and asked if she could come by to help for an hour or so (and bring bagels). I was excited for the extra help, so I gave her our address. I then checked email...and realized that our organizer was able to come by as well to help with unpacking. I could have started to dance a jig I was so excited! Both of them arrived around 11:30, bearing flowers for my Mom. The organizer did an amazing job combining them all into a vase for display. With their help, we made a lot of progress. We emptied all of the boxes in the kitchen, and then my friend had to leave.

The organizer stayed behind and started to impose order on our kitchen...she put the pantry together, she started putting things into the cabinet, and she took charge of our linen closet. I took some time to vacuum in between chasing Micah around the house and cuddling Maya. I worked with the organizer on unpacking, and tried to keep Maya occupied so I could be useful.

I kept calling to check in at the hospital...Krystal arrived, they gave Mom a shower, they fed her lunch...and around 2:30 or so, they finally left the hospital. Micah had gone down for a nap (and slept for nearly 3 hours!!), but Maya would not sleep all day. I was in an utter panic...especially since our mover called a few minutes later to tell us that they were coming by with the last load of things.

Krystal arrived at the house first. It was great to see her again, and I gave her a quick tour of the house. She said the ride down was much easier than she expected, so I was relieved. Krystal has been such a help to us, and I hope that she will continue to work with Mom for a long time.

Naturally, they were unloading the truck when my mother arrived. Huge boxes were scattered all over the kitchen (where they remain) and the downstairs became a dumping ground. We had to quickly shove things out of the way so my mother could come in the kitchen. We had to experiment a bit with the ramps, but we got her inside. I finally got a look at my mom's snazzy new wheelchair - it looks great! It is far more comfortable for her, fits her well, and is a bright green color (toxic green, to be exact). It arrived today, and it is far easier for my mother to use.

Mom seemed thrilled to be home. She was smiling, said the house was great, and she moved onto the couch to sit and relax a bit. It was already late, and Micah was definitely grumpy when he woke up from his nap. We put on some Elmo, and all was right in his world again.

We were doing our best to get situated. The organizer left around 5:00 today...we still have a lot more to do around here before I will feel settled, but I just did not have the energy to do another second of unpacking after my mother came home.

My father ran to the store to get some "necessities" like Breyer's Chocolate Ice Cream and prune juice. While my father was out, we decided on Chinese food for dinner. Dad ran to pick it up, and we had a lovely feast! We all sat down together, talked, laughed, and it was such a great way to spend the night...at home, all together. After dinner, my mom sat with the kids for a little while before bed time. We got on track with her medicines, and I gave her the shots. I have to say, fertility treatments were GREAT training for this...my injections used the exact same pen I had to use, so it was quite familiar for me.

At 8:30, my mom decided to head back to her room and get into her pajamas. Krystal helped her out, the kids said goodnight (Micah even signed "I love you") and we started to put the kids to bed. Mom napped for almost 2 hours. Micah went to sleep easily, but Maya has not wanted to lay down at all.

Mom woke at 10:15, so we gave her medication for the evening. Krystal left at 10:45, and will be back again in the morning. We are slowly making a list of things we need to purchase, but I think our first day went quite well. It is wonderful to finally have Mom home again. While so many things will be trying about our living arrangement, I think the best thing will be all the time my children will get to spend with their grandparents.

I sure hope that we can get everything unloaded over the next few days. For now, the living room, the dining room, the kids' bedrooms, and my parents' bedrooms are functional.

It is now 1:00 am...and Maya is sleeping on DH (but she cries every time he tries to put her down). I think I am going to try taking her into bed with me and calling it a night. I have some video of them leaving the hospital, but I just don't have the energy to post that tonight.

Disastrous move

2010-11-05T06:24:00.002-04:00

Today's move...well, it was an unmitigated disaster. Suffice it to say that we are still not finished...I don't even think half of the house was moved. I'm so exhausted, frustrated and angry about it that I cannot see straight.

The good news from the day...we worked out the commode issue with the hospital staff. It was one particular nurse who did not want to deal with it, but after I spoke to him at 3:30 am...I think he realized his attitude was a problem. Mom is definitely coming home on Friday. She seems to be doing well, but they have not identified the cause of her nausea/dizziness.

Our mover arrived late this morning...no real shock, since he is usually late, but I had asked him to be careful about time because I wanted everything finished by 7:00 for the children. He said "no problem." He arrived at my parents' house at 9:30 to pick up a few things, and then they headed straight for the rental house to unload. They were out of the house at 10:30, so I expected to see them at 10:45! We waited. And waited. And waited. And waited. It was 12:15 before they arrived at our house. I was quite unhappy, but he assured me they would have everything finished.

I again reiterated the importance of being done tonight and early because of the children. By 1:30, they had the first load packed up, and we headed back to the rental house. The lead guy said he had to run a quick errand and he would meet us there. Unfortunately, that was the last time I saw him until after 7:00 pm, and the move went terribly wrong in his absence.

The guys unloaded the truck fairly quickly, and I did my best to quickly unpack as many boxes as possible. They were ready to head back to the house at 2:45. On our way back, they decided to stop for food. I made it home by 3:15, but did not see them again until after 4:00. Over the next 2 1/2 hours, things quickly deteriorated. I sent Micah up to the new house with Megan, and I realized they would never get everything finished.

They were packing up all the things I had asked to be left behind. I had spent HOURS sorting through hand-me downs and give aways, separating the clothes, and sorting maternity clothes for a friend who was pregnant...and they dumped everything together in one big box and put it on the truck! I was LIVID. They kept apologizing, but I was outraged at all the wasted time...both for them and for me.

All I know is that it took them 2 1/2 hours to pack up Micah's room and our closet...one small closet, one big closet, and his furniture. I cannot for the life of me understand what took so long. It took them less than an hour to pack up twice as much stuff the first time around. In the midst of all of this, I was handling some other problems...mom's equipment delivery. The hospital bed arrived...without the air mattress. The wrong commode was delivered, and the lift was incorrect. The other equipment was missing. We spoke to the social worker, and supposedly this will all be corrected in the morning. We'll see - I don't have a lot of faith in anyone getting these types of things right. We also learned that they were going to release her tomorrow, but later than we had hoped. There was a problem with her medicine prescriptions but we got that corrected.

At 6:30, they were ready to head back to the rental house. I was inside the house, trying to nurse Maya, figure out what things I needed to take and how to get them in the car with the baby. I was overwhelmed. I sat in the house trying to gather myself for the next 20 minutes. I spoke to my parents and to DH, and I was so upset that it was so late and we were nowhere near finished. When I finally gathered myself, I realized that the guys had not even left with our stuff! They were still parked in the driveway. I yelled at them, went back inside to start pulling my things together, and then I left. I arrived at the new house around 7:00...and the truck was nowhere to be seen. It was nearly 8:00 before they arrived.

They quickly unloaded and left again, this time with DH to monitor the packing up at the house. DH also needed to head out to go pick up the ramps for our house, too. Since he was gone, I had to deal with putting two cranky children to bed. I went to Micah's room, and I realized I had to unpack it first! I emptied 6 boxes while he watched Sesame Street. I made his bed, I hunted down his pajamas and medication, and I tried to make things perfect for him. Unfortunately, there was no way for DH to be back to put him to bed...and Micah much prefers Daddy at bedtime most nights.

My father showed up and kept Maya busy while I got Micah ready. He wailed and cried and hollered and screamed. I had to decide whether to let him stay up with me and wait for DH, or see if he could cry it out. I opted for crying it out...I hope it wasn't too traumatic for him. He cried for about 45 minutes, on and off. Every time I thought he was quiet, he started again. A few times, I let him know I was here, but I thought that going back in to his room would just make it worse. My father left to go home sometime around 9:30 or 10, and Micah finally crashed. The baby intermittently slept and woke, too. DH got home around 12, and he still had to unload the car. I heard him setting up ramps, but I was asleep on the couch for a few hours, only waking to nurse and cuddle the baby a few times.

The movers never returned again last night. I have no idea if they finished packing up the house, or when/if they'll show up with our things. We need our food and dishes, our offices, and our carpets. There is still an entertainment stand, 2 couches, an ottoman, and a glass table that need to come over, two more bathrooms that needed to be packed up, the kitchen, and we have to drive out to a friend's at some point to pick up a dining room table. I have a feeling a ton of stuff we were leaving behind is going to show up here, and somehow, the "important" things will be left behind.

I spoke to my mom a number of times today - she sounded better as the day continued. I know that she had a few visitors, but I'm not certain how many. I was a little caught up in the drama here.

All I know is that tomorrow I'm going to be racing against the clock by myself trying to unpack and put everything away here. I think Christin, our Friday babysitter, will be here to help with the children. My father and DH will have to go without me to go pick up my mother - I just don't see how this house will be ready if I go, too. I'm frustrated - I wanted to be there to talk to the doctors, make sure everything was set correctly and say goodbye to everyone. I have a feeling a bunch of things will be a mess at check-out because I'm here. I am hoping that the health care company will drop off the rest of Mom's equipment, and I'm hoping that the mover will show up with the rest of our stuff.

The only other good news today? The phone/cable company delivered services as promised. We have working television, internet and phone service at the house. DH and I were able to port our home number to the rental house, so our contact information remains the same. My cell phone, however, is on the fritz...I cannot answer any calls right now. I'm going to try to get back to sleep. My allergies are killing me...moving is not good for dust. We need to do a lot more cleaning in this house, too, but hopefully we can make it manageable for Mom by tomorrow.

Hospital, Moving & SUBs

2010-11-04T04:05:00.000-04:00

I'm sure most of you are interested in an update about my Mom, so I thought I'd lead with that. She is doing well, but we still do not have an answer about what is going on with her. I don't think she slept particularly well last night...she called me at 8:30, 10:30, 1:30, 5:30, and 8:30. Maya woke up again for the first time at 5:00 am, but she immediately fell back to sleep until 8:30. Micah woke up right at 9, and we raced around getting the children ready. Yesterday, we had the pest control specialist kill off the spiders in the house, so today, we asked our cleaning lady to meet me at the house at 10:00 to dust and vacuum and get rid of the spiders and cobwebs.

Because of this appointment, I did not get to the hospital until 1:00. The nurse did a quick interview/exam of Maya, and then gave us permission to bring Maya back to Mom's room for the day! When I arrived, there was a note from one of my mom's friend's daughter that she had been by to visit, but Mom was getting an EEG. I was able to meet with the doctor right when I arrived. He said that her MRI and CT scan both looked good, and he briefly discussed sending her back to the nursing home tomorrow. I explained to him that it would not be in our interest for her to go back to the nursing home for 24 hours, and he readily agreed. Instead, they will be keeping Mom at the hospital at least until Friday.

Our biggest concern is that they have no explanation for why Mom is experiencing headaches, nausea and vomiting all of the sudden. They tried increasing her steroids...but there have been no improvements. We had hoped her symptoms would improve with the antibiotics to treat her UTI, but so far we've not seen any improvements. They did an EEG, but we had not heard the results by the time I left today. We have one possible theory left...they put Mom on an anti-anxiety medication almost two weeks ago, and it is possible that the nausea and vomiting are just simply side effects from that medication. I am a bit nervous for them to release her home without identifying the source of her new neurological symptoms.

Lately, Maya has become the queen of SUBs...and for those of you unfamiliar with this term, it was coined by our friends, and it stands for shit up the back. It is the lovely situation that occurs in all babies when they manage to poop to such extremes that it explodes out the back of their diapers and completely covers their clothing. Naturally, Maya has been so kind as to SUB every day this week, at the most inconvenient times. Yesterday, it happened while we were in the emergency room (and I was so discombobulated that I had forgotten the diaper bag at home). I had to get diapers from the pediatric ER, but it was a mess...and I had no change of clothes for Maya. Even worse...she did it a second time, as I was leaving the hospital. While I was trying to convince a nurse that she was germ-free and safe to have back in the room visiting my mom. I had to take a paper towel, put it underneath her...and drive her home with a diaper oozing poop.

Of course, she decided to SUB again today...this time, I had the diaper bag, but no change of clothes. I had to creatively rinse out the poop from her outfit...and re-dress her in wet clothing. Lovely, right?

Tomorrow is moving day...again. I was counting earlier, and I think I've moved over 25 times since 1991. From 1991-1998, I moved at least 2 times every year...sometimes 3. In 1999, I purchased a condo, bought some heavy furniture, and "put down roots" for 3 years. Then I sold my condo and moved home for a few months while I searched for another place to buy. A few months later, I moved into a rental unit, then bought that a year later. I actually lived in that condo from 2003 until 2008. But, in 2006, we moved some of DH's things into my condo. In 2007, we moved the rest of DH's things out of his house. In 2008, we moved all of our things back into DH's house. In 2009, we moved all of our things from one storage unit to another. In 2010, we moved the rest of our things out of my condo and into the storage unit. And here we are, moving all of our things yet again in 2010. I think when we move back into our house after the renovation, I'd like to stay put for a couple of years.

I truly hate moving - it was so much easier when everything I owned was portable and could fit into a minivan. We are so completely unprepared for this move. We have so much stuff, and we have completely failed to organize and weed through it. Nothing has a place, and I'd guess we should throw out half of the things we have here. Naturally, we'll just end up moving the crap yet again.

Tonight, we also finally started packing. Actually, to be fair, we had the movers come tonight and spent a few hours packing, Megan packed up all of Micah's toys during his nap, and DH spent the afternoon working with our organizer to get his office in order for the move. I'm not sure if we really made significant progress, but we did find the keys for the house today. They were exactly where I thought they were...but hidden under something. I swear I checked underneath there about a dozen times, but I guess I must have missed them. Doesn't it always happen that way?

Tomorrow is the first day I will not see my mom since August 20. I have seen my mom every day for the past seventy-five days. I have driven to/from my mother for the past seventy-two days. It is at least 80 miles roundtrip, which means that I have driven over 5,760 miles in the past 2 1/2 months. My father has made the same trek, too, although a few days we have journeyed there and/or back together. Some days, DH has driven us. But each and every day, we've gone. But tomorrow, she will spend the day in the hospital without me there to check on her...to lay eyes on her, to knock any heads, to sort out any problems. I'm sure I'll call her a million times tomorrow to check on her...but I won't be able to see her with my own eyes. I keep trying to figure out if I can make it up there...but I know there is no possible way to move an entire house and drive there and back.

I'm definitely overwhelmed by how much stuff we still have to pack and move. It is going to require numerous trips back and forth, and I am definitely concerned about how I am going to coordinate the packing up at the house (to make sure that the right things are packed in an organized fashion) and to simultaneously coordinate the unpacking on the other end at the rental house. I am worried about getting everything moved and put away in time to give the children a normal bed time/evening, and have everything sufficiently in place for my mother for Friday. I'm so used to relying on my mother when I move...she and I have the same sensibilities about where things belong. I can trust her to pack up any room, or unpack key rooms like the kitchen, because she would set it up exactly the same way I would. There is no one else that thinks the way we do, and this is the first time I have to move without the benefit of her assistance. That alone is going to make this my most difficult move yet.

On another note, my mom has been calling here on and off since 2:00 am. The nurse on duty tonight is refusing to put her on the commode...this is so frustrating! I already called and spoke to him, and I think he is reversing his opinion. I also sent a note to the doctor and hope he will address this issue in the morning.

But beyond that, I'm a bit worried about her - she was quite strange on the phone tonight. We were talking, but there was a lot of static and noise on the phone, and her voice was very garbled and difficult to understand. The last time I had this much difficulty talking to her on the phone was this summer, before we got her diagnosis. She kept telling me that it was because her phone was in her pocket. I asked her why she was putting the phone in her pocket while we were talking, and she insisted she wasn't. She said it was there before the call, and she had forgotten to take it out. I told her that she could not have called me with the phone in her pocket, and she started to argue with me and tell me how I never believe her and how I must think she is stupid. No...I just know that in order to dial the phone, she has to take it out, press a button to activate the phone, and talk directly into the speaker. I also know that at one point during our call, she had it up to her ear, and I am concerned that she thinks it is normal to put a phone in her pocket mid-conversation. It is like she is forgetting we are on the phone and just putting it down mid-conversation. She has been doing that over the past two days, and it is striking me as another neurological symptom.

So, hopefully tomorrow things will improve with my mother. I'm definitely concerned...I know they keep telling me that everything is fine and that the tests look great...but something isn't quite right, and I'm concerned that they cannot seem to figure out what is wrong. I'm also worried that I will not be seeing her in person tomorrow, and I have to rely on my father to communicate specific information with me - not his strong point. My brother will be heading over tomorrow evening, and I think some friends will be visiting as well. My mother will be alone all morning (probably until 12 or so). I hope she gets a few visitors, and I hope that they keep their promise and get her out of bed tomorrow. We've made far too much progress in her sitting stamina for her to spend all day in bed again.

Wish us luck with things! I hope it goes smoothly, and I hope that we can have everything moved over there and unpacked in a single day. I'm so worried about getting everything ready for Mom, and I have a sneaking suspicion that the kids will be a disaster tomorrow night in the new house, so finding the time to unpack is going to be a challenge.

Bump in the Road

2010-11-03T00:27:00.003-04:00

It has been quite a day...mostly filled with a lot of tears and worry. My mom has been re-admitted to the hospital. She is okay...stable, and mostly there for observation. We think this is more of a "bump" than a setback, but it still came as a bit of a surprise.

Over the past two weeks, my Mom has been listening to Tuesdays with Morrie in audiobook format. She spends a lot of time quoting from the book, and she has repeatedly asked me to read it again. Yesterday, I started to listen to the audiobook on my drive home...but I was in tears the whole way home. I think it just hits too close to home for me right now, and I'm really not sure that I can continue to listen to it at this time. It really is a wonderful book, but I think I'm far too raw to hear this story.

As my Mom and I talk, she always brings up the book in every conversation, usually by saying "Morrie says..." and quoting from the book. We talked about how "Morrie says" that this universe is too harmonious, grand and overwhelming to be an accident. We talked about the circle of life, and a few of Morrie's theories on the birth-death balance. I told her that one of the things that touched me was the story Mitch Albom relayed about the day Morrie got his diagnosis. I don't recall the exact quote, but apparently, he looked outside, noticed the world going on around him and felt like yelling "why is the world still going on when it feels like my world just stopped?" I think that is exactly how I've felt since the day we learned my mother had a brain tumor...sometimes, I just do not understand how the world is going on around me when I feel like my world has just...stopped.

Today, Mom wanted to know if she could steal a line (with a few alterations) from him for her tombstone, or if that would be a copyright infringement. It made me laugh, but I love that the book has touched her. According to my Mom, everyone should read the book. Now that she has finished this book, I might get her Mitch Albom's book The Five People You Meet in Heaven to see if she likes that as well. I also recently added The Alchemist to the ipod, but she seems to be having trouble concentrating on that.

Last night was a rough night. The baby woke up at 5 and my mom started calling me at 6. She was dizzy and not feeling well again. I immediately contacted her oncologist to give him an update. My mom called a few more times over the next two hours, and Micah woke up early, too. I called my father around 8:30 to give him an update, and we started to speak to the doctor at the nursing home to work out the plan of action. We were working on getting the nursing home doctor to at least call the doctor to coordinate the proper tests and hear the recommended procedures.

Micah woke up early, too, and my day was off and running. My father called to say he needed to take the car to be serviced and I had to go up to the nursing home since he was going to be late. I raced around getting ready and had to send Micah to preschool with Megan instead of going with him. I got in the car, stopped to vote, and headed up with Maya to the nursing home. I was there before 11:00, and it turned out, my father was already there. I have to admit, I was a bit ticked that he didn't call me to tell me he was running ahead of schedule so I could have taken Micah to preschool and come up an hour or so later.

We spoke to the doctor, and he told us he was making arrangements for Mom to go to the hospital. SIL, Paige and Peyton came by to visit Mom, but they arrived right at the same time as transport. We made sure Mom had her lunch, the girls said a quick hello, and we all headed out.

My father, SIL and I were all a bit teary - to be frank, we were concerned that my mother was dealing with a brain bleed or significant tumor growth. My Mom was quite clear that she does not want any more surgery. Consequently, we were all worried that this might be the beginning of the end, and we kept getting all choked up. We tried to keep it in check, but not always so well. I was frustrated about what this meant for her rehab stay. I really wanted Mom to have a few more days of rehab before we brought her home. We knew that if they admitted Mom to the hospital, her time at rehab would be over. We debated packing up her things before we left so that we would not need to return later, but ultimately we decided to wait to pack her belongings.

We did have a bit of comic relief before we left...my Dad's jeans split right down his tush!! Yes, his jeans were ripped, and his underwear was hanging out for the world to see. Luckily, one of the staffers told my father, and he was able to take his jacket and tie it around his waist for the day. For the sake of my father's modesty, I will not share the color of his underwear (hey, Dad, note the spelling). We were hysterical!!

We arrived at the hospital and Mom was taken to the ER. My father and I took turns in the waiting room for a while watching Maya while the other one sat with Mom. They immediately took a CT scan, ordered a platelet transfusion, and decided to admit her. The nurse took some pity on us...and got permission for us to bring Maya back into the room with Mom. While there, she dictated an email, I read her the blog and your messages, and we had a few chats. We talked about what a great visit she had yesterday with her childhood friends, and we laughed over a blog message to Mom. It was funny to listen to them talk about the huckleberries...and boy, do I miss my Grammy's huckleberry pie! I also loved hearing all of the stories of when they lived together.

My mom and I kept reminiscing today. I have to say, I wish I had been taking notes, because we remembered a bunch of funny stories, and I remember laughing and smiling a lot while we were waiting. Perhaps my mom will be able to remind me tomorrow when I read this to her, but I think I'm just so tired that I remember the feeling, not the details. My mom also asked my Dad to bring a few of the Dr. Seuss books to the house so that she can record them for the children. As we were talking about the books, my Mom turned to me and told me that we needed to write our own Dr. Seuss book about Dad. She thought that we should use the book Green Eggs and Ham for our book, and suggested it include lines like "Dad can sleep in a house, Dad can sleep with a mouse. Dad can sleep in a boat and Dad can sleep without a coat. Dad can sleep here or there, Dad can sleep most anywhere!" We then started to substitute other words...like shop...and thought the book idea just got better and better!

Before the CT scan, they warned us that CT scans are challenging to read post-surgery and radiation. Often, they look far worse because of the swelling from radiation, and they did not want us to be upset if they told us things looked worse. Luckily, we got good news about her CT scan right away...no major brain bleeds! That was a big relief - they were concerned that was the source of Mom's problem. Even better news...Mom's "midline shift" (the portion of her right brain that is pushed into the left side of her head due to swelling) had reduced by .6 cm - fairly significant! That is really good news because they usually expect things to be worse at this point, not better.

We were there for maybe 2 hours before they transferred her to a room. She is actually now in the Weinberg building, and will remain there for a few days. Because we have run out of insurance days for rehab, Mom will not be readmitted to a rehab after this hospital visit. We asked the hospital to make sure that they can keep Mom until Friday (since we have no way to take her home prior to Friday), and they said it would not be a problem. We asked if they expected her stay to be longer than a few days, and right now they are still anticipating that she will come home on Friday. We will need to work with everyone to get her equipment ordered...we are not sure if they ordered everything at the nursing home or not, so we will need to figure that out in the morning.

Mom was in good spirits today. She really is fine, minus the occasional bouts of dizziness. There is a 1 nurse to 2 patient ratio on her floor, so we decided not to get an aide. She is in a large private room, and the nurses seemed fantastic. They were not concerned about handling any of her bathroom issues or the transfers, and they were very much on top of her medications. Mom says she feels safe there, so we were relieved.

Once we got to her room (around 5), I spent time with her nurse giving her information about Mom. She was quite kind, as was the doctor. My brother arrived around 6, and we stayed with Mom for a while longer. Dad left around 7 to drive back to the nursing home to pack up her room, and my brother and I stayed to sort out a few things at the hospital.

Mom was actually fixated about something she kept seeing outside her window - she was very insistent that she could see a bank sign with the temperature on it, and wanted to know if anyone else could see it. We all took turns, but we kept telling Mom that she was looking at some stoplights, not a bank sign. She was quite funny, though - at one point, I was trying to figure out what she was seeing, and I said "Mom, I'm looking, but I just don't see it." "Did you look to the left?" she asked. "I'm looking left...oh, you are snarky, aren't you? Very funny, Mom." Yes, it dawned on me that Mom was teasing me because we always ask her if she is looking left when she is having trouble seeing something. When I turned to look at her, she had a big grin on her face and her eyes were dancing at me.

It was 7:45 when we left to come home. It was a very long day, but I think my mom is in great hands again. I hope that things stay on track and we are able to move on Thursday and bring her home on Friday. I made a bunch of phone calls tonight to give everyone updates. Mom called a few times to tell me that she is doing well and that they already took her for her MRI. It is now 12:15, both children are asleep, and I think things are okay with Mom for right now. I hope we have an uneventful evening.

Date Night

2010-11-02T06:21:00.001-04:00

More craziness here! I'm going to try to keep it short, mostly because it is 6:00 am and the baby has been up on and off all night, and I have no idea how long I have before she wakes again.

The kids woke up at their usual time. While Megan took Micah to his class, I went with DH and Maya to meet my father at the rental house. We needed to take some measurements and make note of some things around the house to plan for the move. While we were there, Mom called us to say that she had thrown up again. Naturally, I was concerned, and I told Mom I'd call the medical oncologist.

We got the necessary measurements...but I noticed a small problem. Spiders. LOTS of spiders. EVERYWHERE. I'm very allergic to spider bites (as is Micah), so the spider problem definitely did not sit well with me. Luckily, one of my parents' neighbors is a pest control specialist...I grew up with his younger sister, and we've known them for many years. I called him, and he'll be by to take care of those spiders in time for our move.

After our home inspection, I dropped DH off and headed up to the nursing home. When I arrived, my mom's childhood friends were already there, visiting my mother. She was looking great - definitely in good spirits, and no signs of any nausea. We sat and talked with our company for a bit, and then my father arrived. A little while later, everyone had to leave us, so we returned Mom to her room for lunch. Once again, Mom wasn't feeling very well. I sent an email to her oncologist, and luckily he called me back a few minutes later. He was concerned about the nausea, but said it was not presenting as a neurological issue. He did say he wanted to get another MRI if it continued.

Later that afternoon, Mom informed me that she was dizzy when she leaned her head back, and that was causing the nausea. I sent a follow-up note to the oncologist, and we told the doctor at the nursing home. He informed us that Mom has a UTI, but he was concerned about the dizziness. I think he is requesting a scan for her in the morning...but I'm concerned that he isn't going to understand what he is looking at with her brain cancer. He said he wanted to know if there is a "midline shift" - uh, yeah, that is definitely what he'll find, since she has had a "midline shift" since the initially diagnosis and admittance back in August. In fact, it had gotten much worse, and we were told we were unlikely to see signs of improvement for a few months because of the radiation swelling. I also think that a regular CT scan is pointless - he would need to order a CT scan with contrast to see anything useful at this point because of the cancer/surgery/radiation. I sent another note to her oncologist asking if he wants to recommend a particular type of scan that could be done, but we'll see.

The rest of the afternoon was uneventful. We stayed with Mom and she was feeling fine. At 2:00 she went downstairs to finish her therapy. I did our daily facial cleaning and lotioning routine, and Mom told me that she thinks everyone tells her she looks so good because her skin is in good shape now. It made me smile, knowing that she thinks our ritual is helping her.

I left around 4:30 with Dad. On our way out, we ran into three friends, who were on their way in to visit Mom. I was glad that Mom would be having more company today. I made it home around 5:30 to spend time with Micah. DH and I had a surprise for tonight...we were going out to dinner and a massage! My friends decided to come over and babysit the kids to give us some time out. Unfortunately, DH never made the appointments for the massages, so massage and dinner became just dinner.

We went to a new place. It was very good, and kind of interesting. It was Italian food (pasta, salads, paninis, pizza), but it was based on the German market concept. There are tables all over, and there are food stations. You have to order food from each of the stations, and they stamp your card for every thing you order. When you are all finished eating, you just pay the bill.

The food was delicious...but we had a terrible time. The phones were ringing off the hook - I was talking to the mover and to the pest control specialist and to the organizer. I realized that DH had not made a number of the arrangements for the house that I had asked him to take care of, so we were fighting tonight. We are both so overwhelmed by everything we have to do in the next few days and just cannot seem to figure out where to begin. The house is a mess, I'm only home a few hours a day, and we are both pretty stressed about making the move happen. We are hoping that between the organizer and the mover coming the next few days, they can just figure it out and make it happen. If not...I guess all we really need moved is the furniture, our clothing, the kids toys, and the other big things. We can always finish moving the smaller stuff later.

Our first night out in over 4 months, and all we could do was fight. We are both under a lot of stress from everything going on, but I get so frustrated that he delays making appointments for important things, and then he seems surprised that they do not hold time in their schedules for him. I was so angry about everything...the move, the fighting, the canceled massages...that I left the restaurant early and went home. It was 8:45, and I could just tell that the kids were a mess and needed me to get back. I arrived home at 9:00, and walked into the house to find Maya screaming her head off and Micah wide awake and watching tv.

Apparently, Micah was GREAT when we left - no crying or anything. After playing for a bit, he went up to bed, he brushed his teeth and took his medicine, he got into his pajamas...but he wouldn't let them read him a book or put him in the crib. He started to call for his Daddy instead. When the crying started, they brought him back downstairs for a little Word World.

Maya, however, melted down shortly after we left. Poor Maya just did not want to stop crying. She was tired, cranky, and all she wanted was me. Well, to be more precise, all she wanted was to nurse. She was not interested in the bottle or anyone else for that matter. When I walked through the door, I realized that Micah was just fine, so I quickly swaddled Maya up tight and nursed her to sleep. Micah sat next to me and cuddled close while I put Maya to sleep. She was so worked up that she did that temper-tantrum snivel/hiccup in her sleep!

DH arrived home a little while later and put Micah to sleep. Mom called in the middle of all of this to say she was awake, feeling fine, and just waiting for her pills. She said she was nervous that she might throw up again. I told her to call if there were any issues, and I haven't heard from her all night.

My friends left to get home to their dog. They were so kind to come and babysit...but sometimes I feel like taking time off is worse than just doing it myself. I spent the time away stressed about everything going on and wondering how much the children were melting down. I came home to a very upset baby and a wide-awake toddler, and trying to get them to sleep was harder. We are definitely going to need to work on having other people put Maya to bed so that nights out are easier.

At four months with Micah, he was regularly taking bottles and his Grammy put him to sleep at least 1 night every week. Because of Maya's resistance to the bottle and everything else going on, I've been putting her to sleep myself every night, so she really doesn't do well with anyone else yet.

Maya was very uncooperative even after they left - she stayed awake until after 11:00 pm (mostly smiling at me and laughing at the fact that she wouldn't fall asleep). DH and I tried to talk through things...but we were both upset and kept waking Maya, so we tabled our discussion. I finally got Maya to fall asleep, and then I crashed. DH took Maya upstairs around 1:00 or so and he crashed.

Unfortunately, Maya woke up again at 5:00, and it took me another hour to get her back to sleep. Rough night here. I really hope that she stays asleep for a few more hours. I'm going to try and get some sleep - we have another long day ahead.

Three more days until Mom comes home.

Happy Halloween

2010-11-01T07:13:00.002-04:00

I love Halloween! I love the costumes, and parties, and trick-or-treating, and I just love how everyone smiles at cute little kids all dressed up and excited. As a child, I remember getting our costumes ready every year. My mom always had dad remove the screen from the top half of the screen door. She would lock the screen door, and stand there and hand out candy to the kids through the empty screen door portion. I think she did it that way to keep the dog inside, but I often remember her hanging out at the door all night, chatting with the parents and passing out candy.

Pumpkin carving was also a big deal at our house. Actually, the trip tot he pumpkin patch was the bigger deal. Every year, Mom, Dad, my brother and I would drive out to a local orchard. I remember how far out it seemed then - the roads were bumpy and gravelly, and I remember my brother and I bouncing around all over the way back of the wagon on our way out to the farm. We would take a hayride out to the pumpkin patch and pick our own pumpkin (they've now turned it into a full festival with a petting zoo, face painting, rides, and more). I also remember that my mom had to institute a rule...we could pick any pumpkin we wanted, but we had to be able to carry it back. That rule was for my brother - he liked these enormous pumpkins, and my mom didn't want to be stuck carrying or paying for a 50 lb pumpkin.

My brother always grabbed the biggest pumpkin he could find. I liked to find the perfect shape, with few markings on the outside. I liked the perfect pumpkins...clean, rounded, slightly elongated. I would imagine a nice cheery jack-o-lantern face on it, and tried to find the happy pumpkins.

My father would have us draw our jack-o-lantern faces on a sheet of paper (and in later years directly on the pumpkin). He would open up the tops, and Mom would scrape out the insides and collect the seeds. I'd watch her stand there for hours as she emptied out the seeds, then sorted through the muck to pull out all the seeds. She would spread the soaking wet seeds across the counter top on paper towels to let them dry. Once dried, she would transfer them to a cookie sheet and bake them up in the oven - lightly salting them afterwards. We'd spend the next day or two munching on pumpkin seeds.

While Mom dealt with the pumpkin seeds, Dad would carve our pumpkins. He was very precise. He always got my brother's mean pumpkin face *just* right, and he'd make a lovely happy face for me. He'd carefully transfer our designs onto our pumpkins, put a candle inside, and display the pumpkins for the world to see. I loved those times - I really only remember a lot of happiness.

Halloween was often cold here. We'd buy our costumes, and we never knew if we would need to layer heavy sweaters and jeans underneath. Some years, Mom would suggest we would dress up in something easy, like a bum (flannel shirt, ripped jeans, hobo sack, and she'd burn a cork and rub the black on our faces). As children, I remember my brother always going as a super hero. I know I went as Wonder Woman a few times, and Raggedy Ann, too. I also remember my brother's best friend being afraid of masks...she'd come over, see us put on our costumes...and start screaming. We'd take off our masks, show her it was us, and she'd smile and say "I know." But, masks on again...not so happy. I'm still not sure how her mother managed to get her trick or treating - my brother might have had to take off the mask! I do remember one year dressing as a witch (well, several years) and at least one of the years I was on crutches. I remember Dad decorating my crutches to look like broomsticks. It was a cold winter...mom had dressed me in jeans and a navy blue turtle neck and sweater to wear under my cape. As I hobbled around on the crutches, the nose started to fall off...then the hat...then I tripped over the cape. One by one, I removed the items and handed them to Dad. By the end, I was just in my sweater, and everyone thought I had dressed as an invalid for Halloween.

This year, I had planned to take the kids (well, Micah) to the pumpkin patch for his hayride and pumpkin experience. With everything going on, we never made it there. Instead, DH just picked two pumpkins up at the store. I was kind of sad looking at them - pumpkins should come from the orchard, not the grocery store. I noticed that the pumpkins had no stems...Mom NEVER would have let us get a pumpkin without a long stem - too hard to get the top off!

I did, however, get the costume thing right. We dressed Micah up in an adorable fuzzy Elmo costume - he LOVED it. We also had a pumpkin outfit to put on Maya. I was a little sad that Mom wasn't getting to enjoy Halloween with us...so I decided to bring a little Halloween to Mom.

Last night was a really rough night for us...Micah wouldn't go back to sleep when he woke up at 2:30. He was intermittently crying or clinging for the rest of the night. At 4:00 am, his cries managed to wake the baby, too, and I was NOT a happy camper. At 5:00, I brought both children into bed, turned on Sesame Street, and nursed Maya to sleep. At 6:00 am, I took Micah back to this room and he went right to sleep. Maya was easily transferred to the crib. Maya woke up again at 8, but Micah slept until 10:30. We got up, fed Micah, and got both children ready for Halloween.

We arrived at the nursing home around 12:30. We showed Mom the kids in costume and took photos.

Dad was unabe to come today - he had a show for his stationery business, and was there all afternoon. On our way out, Mom had requested a burger for dinner. We decided that DH would run out later and get her one.

We sat with Mom and the kids for a few hours, and around 2:00, two of my mom's friends arrived - with another corned beef sandwich and some cookies for Mom. We had a wonderful visit with them in the lobby area. We all chatted, Micah ran around in his costume - it was a good day.

I took Mom back to the room to do our cleaning and lotioning ritual while DH ran out to the restaurant to get Mom a hamburger. Mom's friend spent some time chasing Micah and watching the baby...it gave me a chance to sit with Mom alone for a few minutes.

I had hoped to leave by 3:00, but naturally it was almost 3:45 before we got in the car. On our way out, we ran into two other friends, who were just arriving for a visit on their way back from a weekend trip. I actually didn't get to speak to my mom last night, so I have no idea about their visit. I know that she was also expecting a few more friends.

We raced back at 3:45 to get the kids ready for trick-or-treating. We tried to feed Micah dinner (I don't think that child ate anything yesterday), and we put Maya back in the pumpkin costume. Dad came over to see the kids all dressed up and join us.

We sat down to quickly carve pumpkins (I had drawn simple faces on them in the morning), and I had tried to quickly carve the top out. Dad is much more skilled...he took off the tops, and I emptied the seeds. I only had a chance to roughly carve one of the two pumpkins, but it was fun. Micah was fascinated with the pumpkins, and we were able to light them up and set them outside.

I don't think Micah fully grasped the concept of Halloween. We went to a party, and he did not seem to really notice the costumes. He did, however, notice the slide. He ran around the yard and played on the slide, and generally had a good time.

We left to start trick or treating just before 6. Getting Micah to walk up to doors and say "trick or treat" was a challenge. He did love grabbing the candy and dumping it in his bag. Unfortunately, he cried every time we left a house.

By the time we hit the 8th house, I'd had enough. Dad had taken Maya back already and was standing there handing out candy when I arrived back home, so I joined him. DH continued on for another hour and a half with Micah, but eventually transferred him to a stroller.

Dad left around 7:30 and headed home. The kids played a bit longer. We had to fight Micah to take off his Elmo costume, but they had a great time. Dad said he spoke to Mom, and that she was thrilled to see the kids in their costumes. All-in-all, a great evening. So far, both kids have been asleep all night. Maya was a bit of a challenge to get to sleep, but she finally crashed around 10.

We bring Mom home in four more days!

Visit from an old friend

2010-10-31T01:51:00.002-04:00

I'm going to try and keep it simple today - I just have so much packing and planning to do. The kids slept in fairly late...which was especially nice because I was up all night.

As I was getting ready, I asked DH to help me find the ipod. Micah started yelling "Mommy, ipod" and he reached up to the counter and grabbed the ipod. Yes, you know you've allowed your child too much access to technology when "ipod" is one of the few words he can pronounce perfectly.

I met my best friend for breakfast at the pancake place at 10 (it is one of our favorite restaurants, and we love to order chocolate crepes and strawberry crepes and share them...it has been our tradition for many years now). My father showed up just before we were seated...he was kind enough to drive down and bring me my cell phone!

After brunch, Maya and I drove up to the nursing home. It was an easy ride, and we arrived right around 12:30. My brother, Paige, Peyton, and a family friend (who was in town visiting from California) and his father were already with Mom. We stayed in her room for a few minutes, and then we relocated to the cafe where we had more room to sit and chat. As usual, the family friend brought another delicious smoothie for my mother...and the girls ended up drinking most of it. A resounding hit!

The girls ran around, played with Maya, and had a fantastic time with their "Uncle." It was his first time meeting Maya...and I would say she did the requisite flirting.

I got a text from DH- he had taken Micah downtown for a rally, and he thought a few of the signs were funny. He said it was unbelievably crowded - more so than almost any other event he had ever attended before.

Dad showed up while we were in the cafe, and we spent some time together. My brother and the girls, and our friends all left by 3, and my father and I returned Mom to her room. My mom showed me a cute little mug that her childhood friend brought over this morning - thank you! It has a great photo of mom from her birthday party, and it says Happy 65th on it.

Dad left a little while later, and I hung around to do our facial cleaning routine, nurse Maya, and give Mom some time to play with the baby. Maya and I took off on the early side (around 4:30). We got home around 5:30, I fed Maya again, and then DH, Micah, Maya and I drove for a quick visit with our family friend's grandmother. We didn't stay very long - we were back home by 7. We watched a little tv, played a few games with Micah, and then bathed the children and put them to bed.

Good news of the day...we now have a new key for our rental house. Tomorrow is going to be a bit crazy...we need to get up to Mom on the early side (Dad is unable to go there tomorrow because he is working) so we can get back in time to take the kids trick or treating. If you are thinking of going to visit Mom, any time is good, but she could especially use a little extra company in the morning (before lunch) and later in the day (we'll probably have to leave by 3). I hate leaving her alone for so long, so I'm hoping she'll have lots of company to keep her occupied.

Mom will be home in six days.

Uh oh...it is 2:30 and Micah is screaming for Mommy. I wonder why he wakes up...bad dreams? Teething pain? Not a good night. Probably because I'm trying to post early, pump early and go to bed early. Let's hope DH can get him back to sleep.

Peyton's Birthday Dinner

2010-10-30T06:51:00.000-04:00

Another good day! Maya was up nursing early, but Micah stayed in bed until 8:30. We were downstairs waiting for the babysitter by 8:45. Micah was quite grumpy today...he started crying every time I made a move toward anything that looked remotely like an object I might need to prepare to leave (keys, my purse, shoes, etc.).

I was supposed to meet my father over at the new house so we could take some measurements. Unfortunately, we spent most of the morning searching for the keys to the new house. I am 100% certain about where I put them, and they are no longer there. I'm a creature of habit...I always put things in certain "designated" places. I do that (and refuse to let myself come up with new locations for things because I never remember those new and creative locations). So, important papers go in one spot, keys in another spot, etc. I do have 1 "dumping" ground...if something is "misplaced" it is always in my dumping ground. So, today I searched for the keys in my usual places - where I keep keys, my important papers pile and my dumping ground. Then I searched everywhere else. We took this house apart, and we cannot find the keys anywhere.

Since they are missing, it means one of several things happened. 1) DH took them and moved them (or thought he'd take them to the store to make copies and forgot that he stuffed them in something). 2) My father saw them and grabbed them and put them somewhere for "safe keeping" and now doesn't even remember that we ever told him the keys were here. (Definitely a plausible scenario, except my father has only been here once since the keys arrived, and I really don't remember showing him where they were). 3) Micah spotted them, grabbed them and started playing with them (he is obsessed with keys) and put them somewhere...possibly even the diaper pail, his new favorite toy. 4) Perhaps the landlady took them back. I noticed when cleaning that she took the wrong copy of the lease - it is possibly she snagged both my envelope and the keys at the same time. I am fairly certain I checked for the keys since she left (and saw them) but maybe I didn't.

After we gave up looking for the keys, we had a lot to do. I decorated a cake for Peyton's birthday, I straightened the house, I played with Micah, I nursed Maya...it was a bit crazy. The babysitter took Micah outside for a bit to play with bubbles, helped feed him lunch, and then we put him down for an early nap. She took care of Maya while I showered and dressed and got things ready for us to leave.

I heard that friends were visiting my mom today. I'm sorry I missed them! It was too hard for us to figure out how to get everyone up to the nursing home today early and make it through to dinner, so we just decided to drive up after Micah's nap.

Surprisingly, we made it out the door on time at 2:30. DH asked to detour by his office to pick up his new cell phone. I had no idea that the little detour would end up making our trip 1 1/2 hours long! We did not arrive at the nursing home until 4:00. I ran upstairs, helped my mom finish getting ready, and we headed out for dinner. We were downstairs loading her into the van around 4:20, and we arrived at the restaurant around 4:50.

We had to wait for a few minutes while they set up the tables, but we did finally get seated. SIL and the girls arrived right on time, and my brother arrived a short while later. Dinner was lovely! The kids, of course, ate nothing, and the adults ate way too much. Mom and I shared food...we had gnocchi and eggplant parmesan, and it was very good. Dad also had eggplant, DH had a delicious pasta with a tomato, garlic, artichoke, spinach and tomato sauce. SIL had a cheesesteak, and to be honest, I have no idea what my brother ordered. We ordered Micah spaghetti and meatballs...and he wouldn't even look at it. The girls had a little pasta, a little gnocchi, a little spaghetti...but mostly ate bread. Micah drank water, and then was throwing a fit. We ended up just playing some Elmo on DVD for him. I know - terrible habit. We cannot just use Elmo every time he misbehaves...but it was so much easier to keep him entertained than cut the dinner short and leave.

Around 6:15, we decided to serve the cake. Peyton had a huge grin on her face as she blew out her candle. I had made her an Ariel doll cake (with a real Ariel doll), and she was thrilled! Now, if I had only remembered to bring the doll's pants and accompanying play toys that I left in the box at home, that would have been a good thing.

Peyton opened her presents and then it was time to say goodbye. We loaded up the things first (leftover food, diaper bags, etc.) and then we took Mom outside. It was freezing!! It took us a few minutes to get her in the van and lock everything in place (including the children). My brother, SIL and the girls said their goodbyes, and Mom, Dad, me, DH, Micah and Maya headed back to the nursing home. I had DH just drop me, Mom and Dad at the front door and head home with the kids. Dad and I took Mom upstairs, got the nurse, and had them give Mom her medications and get her ready for bed.

Dad and I stayed with Mom for another 40 minutes. We took some time to do our "daily routine" - I get a washcloth and take some of Mom's Albolene (a cream cleanser) to rub all over her face and then wipe it off. I then take the cream they gave us at the hospital and rub it all over her face and head. Since we've been doing this routine, Mom has felt far less itchy and her skin is looking much better. I love our daily routine, and so does she. Every day, she tells me that she cannot wait until I get my hands on her.

Tonight, we talked about how this will be our new nightly routine when we go home. She said she looks forward to creating good happy routines for us to remember. I told her that I already had plenty of good happy memories of her, but that I was looking forward to creating many more.

I was impressed that Mom made it to 7:00 without so much as a yawn. I think she has been going to bed early out of boredom. Dad and I left together, and I drove him home to our house. He said he was tired and did not feel up to driving. I didn't mind at all, and we had a nice chat in the car. We got home to two screaming children!! I went upstairs to help DH, and brought Maya downstairs. While my father waited, I changed Maya into her pajamas and started to nurse her.

Dad waited for DH to come downstairs after putting Micah to bed, and he asked him a favor then left for the night. He told me he was tired and going home. No surprise, but Dad called a little while later to tell me that I forgot my phone in his car, and he was driving back down to give it to me. I told him not to bother, that I could wait until the morning to get my phone from him. I realized Dad was in the car, and asked him where he was. Much to my surprise, he told me that instead of driving straight home, he detoured to the post office out by the College. I could have strangled him!! He kept insisting that it was "on his way" home (yeah...about 10 minutes further north than he needed to go, and then another 15 minutes home). I was so angry that he did all that extra driving on a night when he told me he was too tired to be driving very far! There was just nothing so urgent at the post office that could not wait until the morning (and I know he told me he had stopped at the post office earlier in the day, too).

Right after I "yelled" at Dad, Mom called me to tell me she was having a good night so far. It was nice to hear from her. A few minutes later, she called back to tell me that the battery on her book had died. Naturally, I told on Dad, too, and Mom was not happy he had done extra driving either. So, I called Dad back to ask him to ask if he had any more batteries at home (ours are all rechargeable, so they just do not last as long). I also made sure he knew I tattled to Mom about his driving escapades...at which point he realized he shouldn't have been doing that driving. So, Dad, no more running stupid errands when you are exhausted!! Now, I've tattled to everyone, and he'll be very unhappy when he reads this :).

Mom just called...I had to race through the house to find a phone that was charged...no such luck. I called her back, and she is doing well - up for the day and getting ready. We'll head there around lunch time, and she has a few visitors planned.

Routines

2010-10-29T06:59:00.003-04:00

I'm finding it harder and harder to do this same routine everyday, especially now that radiation is done. It almost feels like the rigidity in my schedule is gone now that radiation is complete, so every day I "play" with the time I need to leave for the nursing home.

Thursday was a tough morning...Micah woke up screaming "Mommy!" around 6:00 am...just as I was starting to fall asleep. I don't know whether he had a nightmare or if he was hurt, but he was loud and scared, and I needed to go upstairs and sit with him. After 30 minutes, I realized he was not going to fall back asleep. I decided to bring him into our room - I was hoping that sitting in the dark and cuddling with us would encourage him to sleep...but no such luck. Instead, he woke the baby up early, and DH eventually had to take Micah downstairs for an early breakfast.

Micah had preschool again today, and we ended up sending him with Megan. DH had a work function, and I planned a class with Maya (and our cousins Jodi and Layla, and our friends Ellen and Abigail). Maya and I met Jodi and Layla for an early lunch first at 11:00 to catch up, and I would have had to leave preschool a bit early to make it there on time. Since I was afraid of Micah crying and becoming inconsolable if I tried to sneak out of preschool 15 minutes early and swap with Megan, I decided it would be easier for him if Megan took him instead.

Maya had a great time at class! I think she is a little young still for class to mean anything to her yet, but the singing and the toys made her smile. I think Micah was about 6 months old when I enrolled him in his first class, so perhaps next semester I'll start Maya in a regular class. After class, Ellen had to run to pick up her son, Max, and Jodi and I stopped for a cupcake.

After class, I got in the car and headed to the nursing home, but it was almost 2:30 when I finally arrived. My mother was supposed to be in therapy, but when I got there, the therapist informed me she was unable to find my Mom at 2:00 when she went upstairs. I sat with her for a bit and reviewed different equipment options, and then my parents walked through the door. I guess my father took my mother for a walk and the therapist was unable to find them. It was too late for therapy at that point, so we all went upstairs.

Mom continued to sit in her chair for a few more hours. We talked, we looked for her ipod (it went missing again yesterday, and we still can't find it). Mom asked me to flip a glass upside down (my grandmother used to tell us that if you turn a glass upside in your cabinet when you lose something, you'll find it), so I sent DH a text to flip one over. Hopefully, the glass will help us find Mom's ipod tomorrow.

I called SIL to wish Peyton a Happy Birthday, but she was sleeping. While I was on the phone, SIL's brother and sister-in-law came by to visit Mom. It was so great to see them! They stayed and chatted with Mom for about an hour, and we had a great visit. They couldn't have come at a better time...Mom was upstairs, dressed, in her wheelchair and feeling great.

After they left, we took Mom back to her room and my father headed home. I spent the afternoon trying to deal with getting her blood test results faxed over to the hospital. Apparently, her platelets have dropped again (down to 62,000 from 110,000), which is a normal side effect of chemotherapy. I spoke to her medical oncologist, and he said their goal is to keep her platelets over 50,000, so I believe we just need to watch and wait. She will need to continue getting her blood draws, and they will not be able to start her monthly oral chemotherapy until here counts recover. What concerns me more now is that my mother is also anemic again, and I'm not certain if anyone is monitoring that. It was such a severe issue a few months ago, and I'm concerned again. I gave my father a copy of the blood work, and he will be having my mother's hematologist review the results in the morning. It may be that my mother will need another iron infusion again, too, but I hope not.

I finally left around 5:30 - a short visit for me today. I made it back just in time for our meeting with the architect. We now have 2 bids from 2 different contractors, and we need to choose. We thought we had already committed to one of the contractors, but our architect decided to solicit a second bid from our original contractor (whose price kept increasing during the planning phase). Both contractors are good, and their bids are competitive. One of them is more likely to function on time, and the other is likely to be a little less money. Both will do good work. I kind of feel obligated to one of the contractors (since we did tell him we planned to go with him and that the job was his), but we have not signed anything with either one of them yet. Either way, one of these contractors will feel screwed, and I think our architect might have handled this situation badly with both of them.

Micah was very funny tonight with our architect. He kept pointing to his shirt and talking, and the architect asked me what Micah was saying. I listened for a minute and finally realized that Micah was saying "there is boo-boos." Our architect had a shirt on with several snapshots of Renaissance art, and a few of the paintings had exposed women's breasts, and Micah was just simply pointing out that the women on his shirt had "boo-boos." I couldn't stop laughing...Micah sure does love to identify body parts!

As you can see from the naked doll in the last picture, Micah is still enjoying undressing the doll and putting her diaper in the diaper pail:

Peyton called to talk tonight...and DH and I had a chance to sing Happy Birthday to her (and so did Micah). No calls from Mom again...another quiet evening. I hope me teasing her about her 4:00 am calls didn't make her worry about calling me...I miss having the phone ring all night/morning and talking to her. I somehow don't think she would appreciate a 4:00 am call from me right now, though.

Today we will be heading back to the nursing home, but probably on the late side again. We will be bringing both kids and the van, because tonight we will be our family celebration of Peyton's birthday! DH and I made her an Ariel cake (okay, tonight DH baked the cake and I will be decorating it in the morning), and we'll post pictures of that tomorrow.

Mom will be home in 1 week.

Moving Time!

2010-10-28T03:48:00.002-04:00

I think the panic over all I have to accomplish in the next nine days is starting to set in...we are moving to our "new" rental house on November 4th, and Mom is coming home on November 5. I'm excited, but have no idea how to pack everything up and get it ready for moving.

Today felt like a lazy day...Maya woke up around 8 and I crawled into bed to nurse her. Micah was still asleep, and I had some time to doze a bit. I guess I must have fallen asleep for a while, because I woke up startled at 9:12...and realized that Megan, the babysitter, must have been trapped outside. I realized that the phone line to the house must not be working again...because I definitely did not hear the phone ring from Megan or my Mother. I quickly sent DH downstairs to let Megan in and find a phone.

Turns out, there was nothing wrong with the phone line...just several dead phones. I called my father, worried that I had not heard from my mother since early the night before. He called the nurse's desk to check on her...and all was well. My mom called a bit later to check in, and she sounded great. She told me that she had an appointment at 1 for therapy, and we were wanted at the session.

Dad and I had been given specific assignments by Mom...she wanted chicken salad from Panera and she wanted salad and breadsticks from The Olive Garden. I guess Dad was a bit on the late side arriving with the chicken salad from Panera...my mom had already started to eat her lunch (hey, it was in front of her and she is taking steroids...the woman will eat ANYTHING the minute you set it in front of her these days!!). Apparently, she polished off her hospital meal...and then ate the chicken salad, too.

Today was Mom's first day without radiation/chemotherapy! Unfortunately, it was kind of a rough day for Mom. I arrived at the nursing home just as Mom was beginning her therapy appointment. I had hidden the salad and breadsticks to save for later, but she definitely asked about them when I arrived. We watched Mom do her exercises, I spoke to her occupational therapist about equipment options for the house, and then we watched the physical therapist demonstrate how she has been working with Mom to do the transfers. Mom has been doing most of the work with her right side recently, but still needs a lot of assistance with her right. Her physical therapist demonstrated the transfer...but Mom seemed too tired to help much. They worked on sitting up straight, but Mom couldn't seem to lift her head straight for anything. She kept flopping over...and then out of nowhere, she became nauseated and threw up.

I was pretty surprised...she made it through 6 weeks of chemotherapy and radiation without any nausea, and then suddenly, today, she started to vomit. She threw up a couple times in therapy. She lay down, and they had her do some leg exercises before returning her to the room. She threw up two more times in the room. I started to worry we were dealing with another brain swelling episode, but Mom insisted that she did not have a headache or any other symptoms. We talked to the doctor about getting some Zofran for her...but she threw it up immediately. They gave her some composine, and had to give her the steroids via IV today. I called over to the hospital, and ended up speaking to a fairly grumpy PA who told me to take her to the hospital.

We then had a dilemma...should we take Mom to the hospital or not? I knew that if we were dealing with a brain swelling issue, the hospital was the best place for Mom. But, if it turned out to be bad chicken salad (or the fact that she over-ate at lunch), then we would likely get to the hospital and be released. Unfortunately, we were told that we would lose the bed at the nursing home if we could not be back before midnight. With only a few days of rehab left (and after everything we went through with the transfer/evaluation time), I knew that if we lost the bed at the nursing home, Mom would not be able to complete her therapy. Without another 3 day hospital stay, insurance might not approve another visit back to rehab...and with only a few days left, there would not be enough time for Mom to go to a new place or wait for a new bed at the nursing home and get anything useful out of rehab. I was quite torn about what to do. At this point, it was after 4:00 pm, and Mom was feeling better. We decided to wait and see if she threw up again before going to the hospital.

Mom thought it could just be from over-eating...apparently, she kept saying she was full, and Dad wanted her to eat the chicken salad he had just picked up for her. Mom's intention was for Dad to pick up a big container of chicken salad for it to sit in the fridge and be available for her to eat over the course of several meals if she did not like the food on the tray. I guess my father did not understand this, and in his head, he was focusing on the fact that he brought her lunch for today and the nurses want her to eat 75% of her lunch before they'll give her insulin...but all he heard was that she should eat 75% of her lunch. I guess it did not occur to him that she is not REQUIRED to eat 75% of her lunch at all, she just will not get her insulin if she doesn't eat, and that 75% means 75% of her food tray, not 75% of everything that is presented to her!

By 6:00, Mom was feeling much better and decided to eat some dinner. Her nurse from the hospital finally called back (he apparently was at an appointment and missed the earlier page). We gave him an update, and he said that he thought we made the right decision. He suggested that we ask the doctor to give Mom a bag of IV fluid just to be safe. We requested it...but my guess is that they did not administer it. After talking to the nurse, we decided to leave because Mom seemed fine again (and we were fairly certain she was sick from either the chicken salad or simply over-eating). We asked the staff, Mom, and her aide to call us if she got sick again, and we spoke to the floor doctor and indicated we would probably want to move her to the hospital if she got sick again.

I made it home around 7:30. We had already canceled our appointment with the architect, so my evening had freed up a bit. Micah and DH had gone to a work event for DH, and were well-fed. Micah was rolling around on the floor when I walked in and excited to see me. We had a nice evening, and Micah was just being so cute.

Tonight, we had our mover come by to survey everything and start planning with us. He is great...and he is probably thrilled to have met me 12 years ago. In that time, he moved both of my grandmothers...twice, me seven times, and I have recommended him to a slew of friends. Dad called to check on Mom around 8 and all was well. Micah went to bed easily at 8:30 after the mover left. Maya was a bit more challenging...she was nursing and napping, but just did not want to go to her crib. We tried putting her in the swing...she woke up. We put her in the crib...she woke up. I nursed her again...and she woke up. It was after 10 again before she finally was in her crib and asleep for the night. In the middle of our bedtime struggle with Maya, Mom called me at 9:30 to tell me she was feeling well, and she called Dad around 10:30. So...I think we can blame the chicken salad (although I think Mom is blaming Dad for forcing her to over-eat).

I'm not even sure where to begin with moving this time. Everything is such a mess, and I cannot figure out how to get it all ready. I need to be sure not to move the mess - the last thing we need is boxes of crap all over the place in a new house. Some of the things will be quite easy to move, but other things...

Our current plan is to bring over some basic things on November 3rd at night...a pack 'n play, some toys for the kids, and maybe some of the food stuff. On Thursday, November 4th, I think I'll send the kids (or at least Micah and Megan) over there mid-morning to play, have lunch, and take a nap. We'll spend the rest of the day moving. I'm hoping we can make the move fairly easily, without disrupting Micah's schedule too much. On Friday, November 5th, we'll just drive up to the nursing home and bring Mom home.

Wish us luck!

Ringing the Bell

2010-10-27T06:25:00.003-04:00

It was a beautiful day today, especially at 2:15 pm as the sound of bells and chimes and alarms and phones and horns rang out all over to help Mom celebrate the end of her radiation journey. We received posts on Facebook, emails, texts and calls of support all day long, and my mother spent most of the day grinning from ear to ear. One of my favorite texts today was this one (thanks, Emily):

Maya woke up early to nurse, but Micah slept until 8:30. We got Micah dressed and ready, and DH took him to preschool while I stayed behind to get organized for the day. I also made arrangements for us to move next week...but I'll panic about that another day.

By 12:30, we had the kids dressed, fed, and ready to go. We let Megan go early today, and the four of us drove up to the hospital to meet the family. We all arrived around the same time...SIL and the girls, my brother, my parents, and us. We went downstairs to the waiting area, and things were running on time. My mom looked lovely in her purple jump suit and her beautiful new hat from Donna (her nurse from the hospital). A few minutes later, we headed to the waiting area in back and took it over. The waiting area sits directly across from the room where my mother receives radiation.

The radiation tech came out to get Mom and bring her into the room right on time at 1:45. All of us went back into the room to watch the set up. My brother snapped a few photos, the kids watched Mom get on the table and have her mask snapped down, and we got to see them position her in place. We went back to the lounge for the next few minutes while they turned on the machines.

During radiation, Micah, Paige and Peyton ran around and played together. They were very sweet together, but Peyton showed Micah how to work the water dispenser...and that is all he wanted to do after that.

Right around 2, Mom's radiation was finished, and we were able to go back into the room as they took her off the table, returned her to the wheelchair, and wheeled her out to us. We brought her over to the bell, and got her ready to stand and ring the bell.

The bell is a long cylindrical tube that hangs from a hook. Instead of a chain, it has a mallet that you use to strike the bell. Mom kept saying it was more like a gong than a fire bell. To the right of the bell was a plaque with a beautiful poem about striking the bell:

"Your day has come to strike the bell!

Your silent heart has much to tell

and much to toll this proud new day

treatment done, you're on your way.

Dad wanted to be the one to stand next to her and support her stand. Mom stood tall holding on to Dad, reached for the mallet, joked with Dad as she pretended to strike him by "mistake" and then she let it rip...she rang the bell again and again and again!

She was cheering, we were cheering...even Micah let out a loud "YAY!" for his Grammy. It was a wonderful moment, and we were all so proud to be there. We had quite the audience...the radiation techs, the entire family, Donna, the transport driver, and even the doctor stopped by to watch! A few of our visitors showed up as Mom had just finished ringing the bell...so she grabbed the mallet and did it again. A few minutes later, we wrapped it up and headed out.

Peyton cried and cried because she wanted to go with Grammy. She was inconsolable...she did NOT want to leave Grammy. We promised her they would be together on Friday night to celebrate her birthday. DH, Micah, Maya, Dad and I headed back to the nursing home with Mom for a bit.

When we arrived, we all sat together in the front waiting area before Mom decided to head back to bed. Dad left for home around 4, and we stayed a bit longer. Micah sat in Grammy's room watching his Elmo DVD, and Maya hung out snuggled in bed with her Grammy. I continued reading Mom all of your emails, posts, notes on Facebook and texts. I spent a few minutes cleaning Mom's face with her cleanser and using the cream for her face and head to help the itching, then used a Qtip to help remove some of the dry skin from her ears. While we were wrapping up our routine, the speech therapist arrived for a session with Mom.

Mom was looking a bit tired, so we decided to leave at 4:45. We headed home (and stopped to buy a lottery ticket, too, since it seemed like such a lucky day). Another uneventful night at home, and another difficult night putting Maya to sleep. She crashed at 8, I put her in her crib at 9, she woke up again at 10:15 or so, and it took another hour before DH could get her back in bed. She just wants to be snuggled and hates to be put back down again!

Much to my surprise, my mother has not been calling tonight. I hope that means she has been sleeping soundly. Usually she calls around 8 or 8:30, again at 10 when they wake her for her pills, and then often sometime between 4 and 6 am, and usually again around 8 or 8:30 before she heads to therapy. So far, the phone has been silent...I hope that means she has been sound asleep and having a good night.

For Whom The Bell Tolls...It Tolls for Mom

2010-10-26T06:34:00.003-04:00

It is so hard for me to focus on today while I'm busy thinking about Mom's last day of radiation. I'm excited and anxious and cannot believe we have made it so far. I've got 3 thoughts to share with you, a run-down of our day, and a favor, so here goes. If you read nothing else, please read my favor at the end of this post.

THOUGHT #1: It is funny - I mentioned helping Mom take off her acrylic thumb nail this weekend, but I didn't really explain much about that. Many of you may be aware that my Mom nearly lost the top of her thumb when she was 3 years old. She got it caught in a door, and it was badly injured. They managed to reattach it, but the nail bed was badly damaged. Her whole life, my mother's thumb nail was never...normal. She also bit her nails, so all of her nails were fairly short. I clearly remember her thumb, and always found it fascinating. I know it used to bother my mother...I think she was never fully comfortable with her hands because of her thumb. During the winter, it used to crack and hurt her...I always remember her putting Desitin on it and keeping it covered with a bandaid. Maybe 15 years ago (I am fairly certain I was in college or law school), Mom decided to try and get acrylic nails...and see if there was anything that could be done with her thumb. My mother discovered a woman named Lan, who uses acrylic to build a nail for my mother. Ever since my mother met Lan, she has had a "real" thumb nail...unless you know what to look for, you'd never know that there is anything different about my mother's thumb. It has been many years since I saw my mother's thumb exposed like it has been since Sunday.

THOUGHT #2: I've also been thinking a lot about changes. On Sunday, my Mom and I tried to work on crocheting. It was hard to watch my mother frustrated...and unable to crochet. It was a huge change for us. She still knows how to crochet, but she really does not yet seem able to use her left hand enough to make it possible. I bought her a great contraption for holding the yarn...but my mother just isn't able to see her left arm or make it move on command, at least not yet. I was frustrated for her - we just need to work on her lifting her left arm on command and I think she'll be able to crochet again. We're going to work on that skill and see what we can do.

THOUGHT #3: With only one more day left of radiation, I've been thinking about bells...the significance of bells, and their impact. Bells have so many different meanings...some people love the line from the old Christmas movie, It's a Wonderful Life, that every time a bell rings, an angel earns his/her wings. Others think of bells as a call to action, or a warning or an alert. It is finally time for Mom to ring that bell, signifying the end of her radiation and intensive chemotherapy. For us, a bell will now mean a victory...a small victory, but a victory nonetheless. My mother has made it through the past 2 months of surgery, recovery, radiation and chemotherapy. We'll meet at the hospital - all of us. Mom, Dad, Me, DH, Micah, Maya, my brother, SIL, Paige and Peyton will all be there to support Mom. We'll wait with her, hope things run on time, and at the end of her appointment, we'll watch as she proudly rings that fire bell! I'm so proud of all she has been through to reach this point...a day we were not certain we'd actually get to see.

THE RUN-DOWN: So, a run-down of our day today before I ask a favor from all of you.

Mom was busy calling all night last night...4:00 am, 6:30, again around 8:30...she was up and felt like chatting. She pointed out that I'm usually awake and I told her to call any time, so she does. It makes me laugh...and it reminds me of the times in college when I didn't hesitate to pick up the phone and call HER at 3:00 am because I wanted to talk.

Maya was up around 8:15 to nurse and snuggle, but we did not get up and going until Megan arrived at 9. We had to hurry and get ready and out the door because Micah had class at 10 and Maya had her 4 month doctor's appointment! I cannot believe that Maya is 4 months old already. She weighed in today at 12 pounds, exactly, and she was 24 inches long. She was in the 25th percentile for height and weight, and is doing great. She showed off her skills, she got 3 vaccinations (2 shots and an oral vaccine), screamed and cried until I nursed her, and then crashed from exhaustion into a deep sleep in the car.

I decided not to disturb her sleep, so I dropped DH off at home, and Maya and I continued up to the nursing home a bit early. We arrived at the nursing home around 12:15, and we had 45 minutes to hang out with Mom before Chanel, the transport driver, arrived. We've got a great photo of Dad, Mom & Chanel arriving at the hospital from the transport to show off. Chanel has been wonderful for us - she shaves nearly 2 hours off of Mom's waiting time by sitting with us and driving Mom back. Chanel was in GREAT spirits today...she told us all about moving into her new house and how she surprised her children. It sounds like she had an amazing weekend, and I wish there was more we could do for her to repay her for her assistance with Mom.

We arrived at the hospital early. Radiation was on time, and we were in and out quickly. We had to go upstairs to see the doctor, but we were out the door and headed back by 2:45. Chanel waited again, and we were back at the nursing home nice and early. We are expecting Chanel to join us for our last day tomorrow, too. I hope we have the chance to see her again one day.

I decided to head back to the nursing home with my parents...mostly because Dad and I were hoping for a surprise visitor for Mom. Right around 4:00, she arrived! Donna, my mom's nurse from the hospital, stopped by to visit. It was WONDERFUL to see her, and she looked amazing. She brought a beautiful new hat (and some scarves) for Mom, too, and she is looking forward to wearing it. My Mom is developing quite the hat collection. My grandfather, who was a millinery (he owned a hat store), would be so proud! We had a wonderful visit and chat with Donna. My Dad left first, then Donna, and Maya and I left by 5:15.

It was a good day, and I came home in time for a homemade pizza dinner with the family. Micah again went to bed easily, but Maya struggled. She first fell asleep around 8:30, but woke up again at 9:30...it took us another hour or so to get her to fall back asleep and stay asleep. I'm finding this new pattern frustrating, but we'll keep trying something new and see if we can get her to bed earlier.

THE FAVOR: Now, for our favor....

So many of you have been there with us through thick and thin, and I've been trying to think of ways for everyone to "be there" for this major accomplishment. Of course, I'll be recording it, and I'll post the video online, but I was trying to think of other ways for everyone to "hear" Mom ringing that bell when it happens. So I thought I would ask everyone to help us ring that bell by setting an alarm or a bell to ring at 2:15 pm on Tuesday, October 26 (which is about the time we expect Mom to be ringing that bell). Set your alarm clock, or the timer on your oven, or your cell phone, or your watch, or your appointment reminders on Outlook...whatever works for you, but let's get things chiming all over the place at 2:15 pm so you can ALL "hear" Mom ringing that bell today! And at 2:15, each and every one of you can take a second to think about Mom and listen for that bell. I can't WAIT!!

Last day of radiation. Ten more days until Mom comes home!

Brunch

2010-10-25T04:09:00.000-04:00

Today was quite an adventure...family brunch at the nursing home and another shaved head! The kids slept in a bit this morning. We have been working on brushing teeth with Micah. This week, we started using a new motorized toothbrush...we were hoping the spinning would do a better job of cleaning his teeth, but Micah prefers to watch the brush spin than keep it in his mouth. Oh well...we'll get there.

We decided to skip Micah's swim class so that we could be at the nursing home by 12 for the brunch. Brunch was lovely...eggs, waffles, potatoes, muffins, bagels, juice, and cake. They insisted on serving us, so all we had to do was sit down and enjoy. Micah, Paige and Peyton loved running around and playing together, and Mom had a great time surrounded by all of her family. My brother, SIL and the girls stayed until almost 2, and we got some great video of Mom with the girls.

After lunch, we went back upstairs. Mom sat with us in the lounge area for a while. DH ran to the store to pick up some nail polish remover for Mom (she needed to remove the acrylic from her thumb nail). We sat, talked, watched the kids play, and soaked Mom's nail. I read Mom the blog and your messages, and we had a great afternoon. While Mom and I were talking, DH decided to get his hair cut, too. In fact, DH went bald in solidarity with Mom!

Mom was back in her room by 4 and Dad left. I took some time to grease up her head and face again. Since she shaved her head, we've done a daily routine of cleaning and greasing her head and face. Her head has been far less itchy since we started our routine. Hopefully, once radiation is finished, her skin can finish healing. Mom has also been working on video messages for us. The other day, she recorded a message for Maya. Today, she recorded a message for my brother. She hopes to make at least one for each of us, but has not yet figured out what she wants to say. She wants to make sure that each of us has something from her to watch over and over again...and lots of video so the grandchildren can "get to know her" even when she is gone. So far, her messages have been beautiful. At some point, I'll have to figure out how to tie together all the different video we have of her into something special.

We left around 4:45 to bring the kids home. A quiet evening in...dinner, playtime, baths, and bed. Micah can be so finicky sometimes! He gets angry when he does not get what he wants, but he truly lacks the ability to fully communicate everything he wants to us. We spent far too much time playing "guess what Micah wants." Micah was easy to put to sleep, but Maya was a bigger challenge. I got her dressed and ready for bed around 8:15, and she was out cold by 8:30. I took her upstairs and put her in the pack 'n play...but she woke up. I nursed her to sleep again, but once again, she woke up screaming when I tried to put her down. We spent the next several hours trying to get Maya to sleep. She seemed to want to sleep on me, nestled close, and anything less than that was unacceptable. Eventually, she fell asleep on Daddy, and he was able to take her upstairs and put her into her crib. She has been sleeping soundly ever since. I think Maya is in need of her own bedroom and a new bedtime routine that involves a dark room and a glider. Hopefully, we can give her that when we move into the house. In the meantime, I hope her bedtime becomes easier!

Two more days of radiation. Eleven more days until Mom comes home.

Running on Empty

2010-10-24T06:11:00.000-04:00

Some days, there is just nothing left in the tank...I'm definitely running on empty. I'm focused on the countdown. Two more days of radiation. Twelve more days (we believe) until Mom comes home. Twelve more days of commuting an hour each way, every day. Just twelve more days, and we can return to some semblance of normal.

Somehow, in the next twelve days, we have to move. Not only that, we have to combine households, arrange for equipment for Mom, set up a schedule for caretakers, continue to commute to the nursing home, and try and keep the appearance of normalcy in place for the children. No problem, right? I have not even begun to think about how to go about packing. I know that we do not need to pack and move everything in one day, but we will need to empty our house for the renovation and move all the big things in one day. Thankfully, we do have lots of help...an organizer who can take over the planning, and friends who have offered to come fill boxes. Now, I just have to get over my embarrassment about all the mess in the house, and we're all set!

Another relatively uneventful day...Mom was in great spirits today. She loves the days we do not have to transport to the hospital...the waiting is the worst. My day started with a 5:00 am phone call from Mom. She sure loves to call bright and early! The kids slept through it...but Micah had been awake on and off all night last night, so I got very little sleep. It is rare when he has a rough night...turns out, DH forgot to give him his reflux medication before bed.

Micah did not really get up and moving around until almost 10, so we had a very late start. While we were getting ready this morning, Micah decided he wanted to pee on the potty again. He joined me in the bathroom, he stripped down naked, sat on his little potty...and peed! Unfortunately, he peed right off the potty and all over the floor in front of him. I made a loud noise when I first realized he was going to pee off the potty, and it startled Micah a bit...he stopped for a moment, and I thought he was finished. But, when he realized I was not upset with him, he relaxed...and went back to soaking the bathroom floor. Like every good mother, I cheered for him because he sat on the potty and peed. He was so proud of himself...he clapped and said "Yay!" for himself, too. And then he pointed out that there was a mess on the floor, and gave me this look that seemed to say "Mom, hurry up and clean, would you?" I'm so excited that he is getting the hang of the potty...but cannot for the life of me figure out how to teach him to pee IN the potty. I mean, I understand the concept...we either need to teach him to "tuck in" or use the pee guard on the front of the child's potty. Unfortunately, Micah thinks the pee guard is a toy, and yanks it off every time he sits down on the potty. Maybe I can glue it in place? Although the last time we made an alteration to the potty (we removed the lid so he wouldn't pee with the lid down), he was not happy about the potty for a while. He just doesn't sit still long enough for me to teach him to "tuck in." So, for now, I guess we'll just have to stay out of the line of fire, right? If you have any good suggestions, feel free to send them along!

It was after 1:00 before I arrived at the nursing home with Maya, and my brother, SIL and the girls had already come and gone. When I arrived, my father and four of my mother's friends were all visiting my Mom. I was only there a few minutes before she had to leave for physical therapy (another surprise...we were told she had no therapy sessions this weekend). I waited with everyone while my Mom did her therapy, and when she returned, everyone else left. I stayed with Mom (and Krystal) for a few hours, and we talked. I showed Mom how to work her new audio book that Dad picked up from the public library, and we talked more about death and dying. I read her the blog and messages, and we spent time talking about happier subjects. Mom made several phone calls, attacked a peanut butter and jelly sandwich, and then she looked exhausted. I left a little before 5 and headed home for the night.

I had a nice, but quiet, evening at home again. Maya has been a champ lately...she is loving her pacifier, taking bottles (okay, 3 times now), and she is getting so close to rolling from her back to her belly. Micah has been so cute and loving with her...he gives her kisses and hugs, and he seems to like her most of the time. I love watching him try to dress himself...today he put his dirty shirt from yesterday on...but on his legs. He has huge conversations with me...I just wish I knew what language he speaks. My mother used to swear that my brother spoke Czechoslovakian when he was a child...but I think Micah speaks some sort of alien language. DH would probably make a joke about him speaking Klingon (ever since we discovered Micah's skull issue last year, DH likes to compare him to Star Trek Klingons who apparently have a similar ridge on their forehead?).

Micah was not a happy camper today, though...he realized that DH had safety locked the silverware drawer, effectively stopping Micah from his nightly habit of emptying the drawer of all of its contents. He cried for quite some time when he discovered the drawer was locked. I should feel sympathy for him, right? I spent most of my time laughing because his irritation was so darn cute! He makes me laugh when he is angry.

Desertion

2010-10-23T04:43:00.003-04:00

I think my ability to write may have deserted me tonight. Today was one of those days that just felt...slow. One of those days when I kept glancing at the clock all day long, each time surprised that only 5 minutes had passed since the last time I checked.

I never made it upstairs to bed last night. Again. I did catch a couple hours of sleep on the couch before the children woke up, but Micah got up a bit early today. My mom called bright and early, too, to tell me that she had a good night. I love her phone calls, even when they wake the kids. It makes me smile to know she is thinking of me.

Micah ate a good breakfast again...I think he loves to eat eggs. I keep wondering whether I should try getting "fancy" with the eggs...maybe fried eggs, or a bird's nest. I always end up keeping it simple...plain old scrambled eggs, with either an English muffin, cereal, or oatmeal. He usually likes a little fruit (either raisins or a banana) to top it off.

Our babysitter arrived at 9, and I spent most of the morning playing with Micah and trying to accomplish odds and ends...like sorting the mountain of laundry for Maya. Those hand-me-downs have been a mixed blessing...with all the clothes, it takes me forever to try and figure out what pieces go together and get it all organized. I still have pants that do not seem to belong with any of the tops, and vice versa. It will be wonderful to have new (and warm) outfits for Maya to wear...but I think those unmatched pieces are going to make me crazy! If history holds true, I will probably find the matched sets when it is time to pack them all up again.

I was late leaving for the hospital today. I just couldn't seem to get myself going. Maya was napping and I did not want to disturb her, but then she needed to nurse when I finally tried to move her into her car seat. As I left, DH was dealing with an hvac technician who was supposed to be replacing our thermostat under warranty. Unfortunately, the touch screen broke, so we can no longer adjust the temperature in our house. The air is stuck too high, and the heat too low, so it is always either too hot or too cold in the house. This has been going on for three weeks now, and I hit my limit of "waiting" for the warranty replacement. Suffice it to say...we did not get the warranty replacement done today...but DH did go out and buy a new thermostat at Home Depot and install it himself. I sure hope he did it correctly!

Mom was in great spirits today. Once again, we had requested a specific driver...Chanel. She has been so wonderful to us these past few days, and whenever we get her, she also waits with us so Mom can return to the nursing home faster. Chanel shared with us that, despite the fact she has been working, she has been homeless. She has 4 children, too, ranging from about 6 or 7 up to 17. She was thrilled to share with us that as of tomorrow, she will finally have a home again! She has been working with an organization who helped her out, and she had the biggest grin on her face as she described her new 4 bedroom home with beautiful wood floors. I couldn't help but smile along with her...I hope her new home is filled with happiness and that she and her children always has a roof over her head.

This journey we've been on has been incredible. We've met so many wonderful people...staff at the hospital, transport drivers like Chanel, nursing aides like Krystal, the woman with lung cancer undergoing treatment when my mom first started...who used to sit and chat with me every day while I waited for mom, and yesterday, the family with a daughter who had lymphoma. I never even asked their name, but this family touched me. Their daughter could not have been more than 10 or 12 years old, and there she stood, bald head, mask on her face, and a huge grin as she rang the bell! They were from out of state, and drove all the way down each week for treatment at the hospital. We talked about how when it rains, it pours...the father had a heart attack the previous week, and ended up in the hospital while his daughter was undergoing treatment. We connected as we talked about how it feels like everything bad keeps happening all at once. We talked about how we wished we could just stop everything else in our lives to focus on this for 6 weeks, because the juggling and balancing everything else like work and finances and commuting and children is just...too much sometimes. Though we only spoke for an instant, we bonded - in that moment, we just understood each other. I hope that their daughter's treatments were successful, and that she lives a long and cancer-free life.

We were back at the nursing home quite early (thanks to Chanel) - about 2:40! My father took off early, and I sat with my mom and Maya for a bit. She made some phone calls, she talked, and we did some planning. My mom decided she wanted to make a video for Maya - a beautiful message to her to tell her how much she loves her. Mom would like to make videos for all of us, but she struggles with what to say. I think that when the time is right, she will know.

My mom is a little anxious again about death. The Rabbi came by today to talk to her, and she has been fixating on things again. In her head, she thinks of death as being buried alive. I've already mentioned how much that disturbs me, and I have no idea when that thought started. I often wonder if that is the tumor and steroids talking or if she has always felt that way. It is like one minute she thinks of death as the body stopping...and the next minute she somehow thinks we will just bury her alive. She is worried about animals getting in, about sitting in the dark, about keeping warm and making sure her cell phone is working so she can call everyone.

I wish there was some way I could alleviate her fears. We talked a little about death again, and I told her that I just could not believe that death was like being trapped in darkness underground. I think that if you believe that life ends at death, then there is nothing. We simply cease to be, feel nothing, and the body slowly disappears. If you believe that we are more than our bodies, then it *has* to be that the body separates from the soul, and that the soul is free. It makes no sense to me that we could have a soul that continues on in some capacity...but gets trapped inside a feeling body. I think the point of having a soul that continues on is that it IS free - one with the universe, or in a heaven somewhere, or perhaps floating near family.

I'm not sure what I believe about the hereafter. I like the thought that our souls continue on in some capacity. There are moments when I've felt that my loved ones must be nearby. I think that even if I do not believe in souls continuing on in the literal sense of the word, I do believe that we continue on in others.

In one of my mother's posts, she said something about saying goodbye being like giving your memories away to your friends. I was not quite sure what she meant at the time, but I've been thinking about it. Maybe dying is like becoming a memory, and maybe the soul is just memories and feelings that live on in others. There is a Jewish prayer that we often recite when in mourning or observing yahrtzeit (the anniversary of a loved one's death). I won't publish it here today, mostly because today is no time for mourning. It talks about how we remember people we've lost during the simplest times...in the rising of the sun, in the blowing of the wind, etc. My favorite line is "As long as we live, they too will live; for they are now a part of us, as we remember them." I like the idea of people we lose living on as a part of us...they feel no pain or fear, no cold or animals, but they are close to those of us who love them most and think of them often.

After our "heavy" day today, I left my mom on the early side - before 5:00. Mom was sleepy and ready to nap, so I decided to let the aide handle her dinner. Krystal was on the nursing home floor working when I left, so it was good to know she was around to help out if needed, too. I made it home by 6. DH and Micah went to services and a Shabbat dinner. I think the preschool was doing a Shabbat dinner, but I just did not have the energy to go. I managed to get Maya to sleep early tonight - before 9:00 pm in the pack and play! The pacifier seems to be the key...as long as she can keep sucking, she is happy. I am hoping this is the beginning of a beautiful new pattern...and an earlier bedtime for Maya.

I'm off to bed. I have Maya's laundry from last week all folded and sorted (finally) and another load of my laundry ready for the dryer. I still have a third load of my clothing to do, a load of towels, and another load of the children's clothing from the past few days. I think I could spend forever doing laundry.

We've been told that mom has no therapy sessions this weekend, so Saturday will be quiet for Mom. On Sunday, there is a family brunch around 12, so we'll all be there with her for that.

Brave and Bald

2010-10-22T07:12:00.000-04:00

Mom was brave and gorgeous today...as you can see from her photo, she decided to shave her head. What do you think? I LOVE it! I think she looks beautiful, and I'm so proud of her for doing this.

I'm going to do a very quick run down of our day again...kids awake at 8:30, babysitter here at 9, Micah cried most of the morning because he thought I was leaving. Megan took Micah on a walk while I left for the hospital . On my way up, I spoke to a friend visiting from out of town...she had extended her stay until Monday. The hospital was mostly on time, and transport agreed to wait for us. We were back at the nursing home by 3...and Mom had her hair done!

She sat there calmly, getting her head shaved. After the shaving, she was able to have her scalp massaged and washed off - and she said it felt wonderful. She did a bit more PT after her hair do. I stayed around until 5:15, then stopped by another hospital near my house to visit my friend's mom (who just had back surgery). We were all home by 7, and we spent the evening hanging out together.

Family...chosen

2010-10-21T05:21:00.003-04:00

Family. Today is a day that I am thinking about family. Family comes in all shapes and sizes...it is the family you are given, and the family you make. My mom and I were talking today about life...friendships, death, and other heavy topics. My mother has so many lifelong friends, and I really don't have the number that she has. I have a few, but many of them are not still in my life on a daily basis. And then I think about her friends that she has known for the past 40 years...and I realized that maybe, just maybe, a few of my friends from the past 5-10 years will still be in my life 40 years from now, and I hope that I am lucky enough for that to happen. My mom said that when they first moved down here, none of her friends had family close by...so they made their own family. She is right - so many of my mom's friends (and their children) feel more like family to me than friends. They are my "Aunts" and "Uncles" and their children are my "Cousins."

Tomorrow, my mom is meeting with the Rabbi. She keeps thinking that he'll tell her she is crazy when she starts talking about death and all the things she wants to bring with her. She then asked me if she should share her "tag line" with him (what she plans to say to me when she calls me from the grave on her cell phone). Mom then asked if I would share our conversations from her grave on the blog after she died. I then said to Mom that if she called me from the grave on her cell phone, and I wrote about it on the blog, there would be several hundred people calling the authorities to have me locked up in the crazy hospital!

We tried to talk more about my Mom calling from the grave. She said that in Tuesdays with Morrie, he said that when you die you are just gone, and that she believes that, too. But then she talked about becoming one with the universe, which seemed like a nicer thought to me. I asked her why she thought she would be calling me on a cell phone from the grave if she thought that when people die they are just gone. She thought about it for a minute, and didn't have a response. I asked her if she thought Grammy was in her grave able to talk on the phone. My mother shook her head no, so I asked, "then why do you think you'll be calling me from the grave when you go?" Her response? "Because I know how to work a cell phone and Grammy doesn't." Okay - point taken.

I think it upsets me that my mother is thinking about death as if we'll bury her alive. That she is thinking she'll be locked in a box under ground, wanting to talk to us and unable to reach us. She is thinking about how she will charge her phone, but she is certain that she'll have good reception under ground (it works on the subway, you know).

My mom and I also talked about love. I have a whole other post I've been playing with...but I'm going to save that for yet another day. Maybe tomorrow. Suffice it to say that my Mom told me she is very proud of both of us (me and my brother)...more proud than she ever would have believed possible. She talked about how thankful she was for our support, and then said that she doesn't know how a person could go through all of this without a family. She said that a person would just get lost and die without family around - bad medications, missed treatments, etc. I think that she is correct. I would bet that the studies show that survival rates are proportional to family support. We've been told before that many people with transport issues simply just do not do treatment because it is too hard to do alone. How is it that in a world with such advanced technologies, we still cannot figure out how to make sure that sick people can take advantage of available treatments?

It must have been a long day today, because I can barely remember many of the details. To be truthful, I cannot remember which child woke up when this morning. I think I remember being awake on the early side, and I am certain I did my best to let DH sleep in a bit on his birthday. I hope that DH had a happy birthday...despite the fact that it was not a day all about him. He did not get a card or a gift from me today, and I am sorry that I just could not do more to make it more special for him...but I did let him sleep and tried not to give him a hard time about anything. I do remember DH bringing Maya downstairs to me and then going back upstairs to bed. I also remember Micah being a bit on the cranky side again today. He did eat all of his breakfast - eggs and an English muffin. I remember that because the sight of Micah eating these days is becoming a rarity!

Somewhere in the middle of all of this chaos, our new landlady showed up with the final contract and the keys. There are moments when my sarcasm seems to get the better of me...and dealing with my new landlady this morning was one of those times. She started to lecture me about taking care of the house (we have a contract, and we're liable for damage, so what does she think, we are handing over all of this money so we can trash her house?)...I very nearly told her that I had no intention of taking care of the house, but would prefer to run through it with a sledgehammer and destroy it. She then told me we needed carpets in the house. I said we were moving all of our things, and that included carpets. She started to explain to me about how carpets work, described what she meant by carpets...at which point I cut her off, told her that I was well aware of carpets, she was standing on one, I pointed out the one in the kitchen, and I told her that when I said we had carpets and would be moving them, I meant we would be using carpets. She then tried to explain again WHY she wanted carpets, and I think I practically shoved her out the front door. I think this woman is going to be a thorn in our side.

Micah and Megan headed off to class around 9:45, and DH, Maya and I left for the nursing home. Today was our care planning meeting at the nursing home. The meeting started a little late, but it was a good meeting. We received a report from each of the departments...nutrition, nursing, rehab and social work. She has been standing for over 10 minutes with the knee support, she is doing quite well with assisting in transfers using her good side, and she is doing extremely well in speech therapy. Overall, my mother is doing quite well and making progress, and the rehab people are recommending that my mother stay until November 4 to continue working on her therapy. We are waiting for word from insurance, but we are hoping for the extra days to help my mother build her strength. We had the opportunity to voice a few complaints...about the medicines being administered poorly, etc. We also learned that my mother has been losing time at rehab because the nursing staff has consistently failed to get her ready and downstairs for therapy by 9:00 am. We were not happy to learn about this, but we have been told that it will not happen any more. Once we have a more precise discharge date, we will begin to work with OT and the social worker to obtain all of the equipment we will need for Mom when she gets home.

After our planning meeting, Mom ate lunch and got ready for transport. I had brought Mom and Krystal cupcakes, and a chocolate covered strawberry for Mom (by the way, I forgot to mention yesterday that I received a BEAUTIFUL surprise...an entire box of chocolate covered strawberries! They have been incredible, and I believe I already mentioned my obsession with chocolate covered strawberries). While we waited for transport, Mom ate her cupcake and said it was a wonderful treat (she saved the strawberry for this afternoon)!

Transport was a bit late, per usual. On our way to the hospital , I received a text from my friend...her mom had back surgery today, and is doing well. When we arrived at the hospital, we learned that they had an emergency and were running about 15 minutes behind. As is par for the course, 15 minutes became 30 minutes became 1 hour. We had gotten transport to wait with us...and at the 30 minute mark, she left I immediately had my father call and schedule another transport back, because I knew that we'd never get back unless he called immediately. Naturally, 10 minutes after she left, we were ready for transport again. My mother was ready to go by 3:15, DH, Maya and I left at 3:30, and at 3:45 they were STILL waiting for transport. I kept calling every 2 minutes until transport finally arrived. I just do not understand their system!

We got home right around 4:30...and I was amazed that the house was cleaner. Megan had straightened up a bit...emptied the dishwasher, organized the toys, cleared off the dining room table. I just couldn't thank her enough! I waited for our friends to come meet me. While I waited, I spent some good quality time with Micah. Micah has a new game he likes to play...he opens the front door and stands between the door and the screen. He says "bye-bye," and then closes himself between the door and the screen. He opens the door again a few minutes later, pleased with himself, and then starts all over again. The game makes me nervous...I think about my mom warning us about doors and children's fingers (she nearly lost her thumb and the tip is severely damaged to this day because she got it caught in a door when she was 3), I worry that he'll accidentally lock himself in there, and I also worry that he'll somehow suffocate in that space. But, try as I might, I cannot get Micah to give up his new game.

My friend arrived a little while later, sans her mother. Her mother needed to stay behind at the to take care of some things for her grandmother. My friend and I headed off to the nail salon, and we had a nice chat. We talked about so many different things...her pregnancy, Mom, her grandmother, the future, and we spent a good deal of time reminiscing about the past. After our nail appointment, my friend and I went to get dinner for everyone, and brought it home. My father had arrived, and it was our plan to eat dinner together...but like all good plans, it was foiled. Her parents were stuck waiting for an aide to show up to take care of her grandmother and never made it to dinner.

Instead, we sat with far too much food (but had a lovely dinner). My father left after dinner, we lit a candle for DH's birthday, and we had cupcakes. My friend and I continued to sit and talk after dinner. We were so much a part of each other's lives growing up...she used to call our house EVERY morning at 6:30 am before school. She always came over and sat at our kitchen table while my brother and I ate breakfast and got ready for school. If I sat here and shared all of the stories we discussed, I think the blog would be a novel. We laughed about the times she would try on every outfit in her closet...about 10 minutes after her mother had just folded and put it all away. I remember sitting with my Mom as she comforted her mother who was beside herself with my friend's closet-emptying addiction.

We laughed about the time my brother first noticed that she had grown breasts (it was over breakfast one morning before school). We also laughed about her's baking adventures...I remember one time when my best friend was babysitting her and her brother, and she called me crying about how she did something awful in the oven and she was worried they would fire her. I ran over to help out...and saw the chocolate chip "cookie" that was shellacked to a cookie pan. I still have no idea what she did, but I'm fairly certain the pan was history. I recalled my first "real" date (one that drove a car)...and I remember clearly that her parents showed up to see me off, too, and I was totally mortified that I had 4 parents there with the potential to embarrass me!

And we never reminisce without me reminding her of the time she nearly attacked me with knives. She and my brother were hanging out by themselves after school one day with their friend. She was always fearful of being alone, and she managed to convince the other two that someone was breaking into the house. I was by myself at our house, and received a panic call from them screaming about how someone was trying to break in and kill them. I rolled my eyes, grabbed the key to their house, and headed right over. I knocked, but they didn't answer, so I put the key in the lock, opened the door...and from every direction, children with hands full of knives, scissors, and other sharp instruments jumped out at me screaming "YAH!" Yes, they went nuts and tried to kill me. I confiscated their sharp implements, calmed them down, and stayed with them until her mom came home. I don't think I told her mom that they were playing with knives, though, because I knew they would get into trouble. My favorite...my brother playing the tough guy after the fact as he told me how crazy she was and he knew better. I remember thinking, "Yeah, that is why you only had 3 knives in your hand instead of 50 knives and 2 pair of scissors."

We spent so many family holidays together that it is hard to think about my childhood and not think of them. We were in and out of each other's houses daily, and sometimes it felt as if there was an open phone line between our two houses. We always think of each other as sisters, not just friends...so it was wonderful to spend the afternoon today with my "sister."

DH's brothers and parents called today, too, to wish him a Happy Birthday. Micah talked a bit on the phone to his Grandma and Poppy. We are working on getting him to talk on the phone with them. He did say "night, night" and kiss the phone. We need to get one of the family members to set up their web camera and get them set up with a Skype account - we should be video chatting with them more often.

I guess it is nights like tonight that I realize how lucky I am to have so much family...both my blood relatives, and the family we've chosen. I'm so glad I got a bit of a break today. Happy birthday, DH...we will definitely plan a night out in the near future to celebrate.

Uneventful

2010-10-20T07:07:00.002-04:00

Sorry I'm so late with the blog today! Yesterday was rather uneventful (in a good way). My mom had a new aide for the day (she was no Krystal, but all seemed to go well). The hospital was on time with radiation, and transport back was on time, too. Mom has been feeling good, and we are planning for her return home. We read mom the blog and the messages.

We had preschool for Micah yesterday...he was so well behaved! I made it to the hospital early, and Maya and I got our usual attention. On our way back from the hospital, I detoured to the grocery store to take care of a minor "emergency"...we ran out of Breyer's Chocolate Ice Cream! Mom was very itchy yesterday, so I spent some time greasing up her face and head.

I left early for the day and came home to bake cupcakes for DH ...it is his birthday (today...the 20th). I am experimenting with a new recipe, so we'll see how it all turns out. We hit another major milestone...Maya actually took a bottle! I think we may finally have gotten her over the hump and she seems to have figured out how to suck. It was such a relief. She only took 2 ounces, but I am declaring victory. I hope she will take a bottle again tomorrow!

It is 7:00 am...I'm getting the "yesterday" and "today" all mixed up in this journal! Today (meaning the 20th) should be interesting...we have a family meeting to discuss my mom's rehab stay, and I have plans this afternoon with friends.

New Normal?

2010-10-19T05:03:00.004-04:00

Maya was up a bit early again this morning so I brought her into bed to nurse and sleep. Micah woke up at 8, but we left him in his crib until 8:30. We were downstairs with both of the kids by 8:45. Micah was being difficult this morning - he would not eat any breakfast before class.

Mom called this morning to tell me that all was well...and Krystal was back again! I was glad to hear it - it is always easier to have a familiar face than try to work with someone new. While Micah and Megan were out at class, I finalized the lease for the house!

Micah and Megan returned, and we spent some time together before lunch. Micah's nose was running a bit this morning (I think from allergies). He was very cute - he now knows how to blow his nose! He is truly getting to be a big boy - last night, he walked up the stairs on his own - completely standing on just two legs, not crawling or using his hands. I was out the door at 12:30 to meet my parents at the hospital.

For the first time in a very long time, things ran smoothly at the hospital. Our nurse was getting ready to go on a charity trip to Guatemala next week. Before he left, he gave my mother a worry doll to carry in her pocket, and a CD of piano music that her recorded. My mother was once again, touched by generosity. I uploaded the CD to her ipod tonight. My mom asked for a different cream for her head (due to the itching), which sparked an impromptu visit to the outpatient clinic so that we could meet with the radiation doctors. They gave us a prescription for a new cream, and now we are just waiting for the nursing home to fill the prescription and bring it to us. We also requested written orders for the nursing home regarding my mother's last radiation and chemo treatments date.

Much to our amazement, transport was waiting for us as we were finishing up our meeting with the doctors. My mother left the appointment and went straight onto the wheelchair van - for once, we were back at the nursing home right around 3! It was such a relief to have the day nice and short - we have had far too many long days.

When we returned, Krystal helped my mother back into bed while we turned in my mother's written orders. We also learned (on the way home) that the weekly blood draws that were requested from the doctors at the hospital had never been delivered. My father called the doctor, and we *think* they did the weekly blood draws but just failed to send them over to the hospital - we think we can get this corrected in the morning.

I learned that my mom's friend had been by to visit in the morning and had brought us mushroom barley soup and a chocolate babka! Even better...she framed a picture of our family that we took on Saturday at my mom's birthday celebration.

My father left a little while later, and I hung around for a bit to read mom the blog and take down her message for today. While we were there, Maya actually sucked her thumb!! I know that doesn't sound like anything important, but with all of Maya's sucking and swallowing problems, fingers in her mouth (even her own) usually make her gag and sometimes even throw up. She actually took her thumb and placed it in her mouth and sucked...normally. For several minutes. It is a huge milestone for us.

My brother, Paige and Peyton showed up for a visit around 5:00. It was great to see and spend a bit of time with them, and my mom was just thrilled they were there. They spoke, she got kisses from her girls, and it was a beautiful afternoon.

I left before my brother around 5:15. Krystal was still there, and she was heating up some leftover food for Mom for dinner. When I got to the car, I decided to see if Maya would take a pacifier to keep her calm...and much to my shock and amazement, she did! She sucked on that thing for a good 10 minutes, and cried when it fell out. Maya has never been able to take a pacifier, so I am thrilled we have finally made some progress!

I made it home in an hour, and we had a phone appointment with our architect to discuss the builder's proposal. Things are slowly but surely moving ahead for us.

Despite everything, tonight was a rough night for both of the kids. DH put Micah to sleep at 8:30 and then went out to Target to pick up a few things we needed. Naturally, the minute he left, the children both melted down. Micah was shrieking and would not go to sleep once he heard the door open and close, and Maya would not let me put her down. I find it nearly impossible to deal with both of them melting down at the same time. I eventually brought Maya into Micah's room, and rocked with her while talking to Micah.

All was well for my mom tonight - she called around 10 while I was still struggling with two awake and cranky children. She was thrilled to hear about Maya taking a paci, and she did her best to help comfort the kids (and me) over the phone. I said goodbye, and spent the next hour dealing with two competing cranky babies. Maya finally passed out - she would whimper every time I tried to put her in her crib, but she was quite content in the swing. Micah was awake, but finally let me go downstairs. DH got home a little after 11, and he took over with Micah. I think it was close to midnight before Micah finally fell asleep.

Thankfully, Maya has stayed asleep (DH was able to transfer her to her crib without incident). I hope both kids stay asleep for a few more hours!

I'll meet my parents at the hospital again tomorrow. We made an appointment to have my Mom's head shaved on Thursday, and I uploaded an audiobook for mom onto her ipod, so hopefully she will be a little less bored. I may try working with her a bit on crocheting, and I'll remind her that she has cards - perhaps someone can play cards with her in the evenings.

8 more days until the end of radiation.

Message from Mom

2010-10-19T05:03:00.000-04:00

I only have 6 sessions left of radiation. All this week and 2 days next week. When treatment is over, there is a tradition at the hospital to ring a fire bell. I'm looking forward to ringing my fire bell with the rest of them in celebration. It means I've completed a large milestone that I wasn't sure I would get through unscathed, originally.

I also think I've reached the end of having nothing to do. Tess is bringing me books on tape - I need something to do. I've been doing word searches. I used to do them by the hundreds, but I find them difficult now because of my vision, and sometimes I feel very dumb. I guess I just need to get back on and try again.

Transport was on time today - whee!! It makes my day so much shorter and less aggravating. Things are okay here - they are late with my meds daily. Things are better now with the aides - Krystal is wonderful and I don't have to worry.

I am having difficulty sleeping all of the sudden for some reason. I used to sleep immediately and for 12 hours a night, but falling asleep is hard now.

Order and Control

2010-10-18T05:37:00.000-04:00

I'm sure it is no surprise that I like order in my life. At the root of my need for order is control...once again, I'm sure no one will be surprised that I like to feel some sense of control over myself and my environment. Needless to say, my life is seriously lacking order right now. We are at the mercy of transport, and doctors, and radiation...we spent our lives waiting and wondering what will happen next. That is probably one of the hardest parts about all of this for me...I feel like my ability to control myself and my environment has been stripped away on so many levels, which makes the things I can control so much more important to me.

Normally, my house is the one thing I can control. When everything else in my life gets crazy, I put my house in order - it gives me a sense of calm and control so I can face the rest of the chaos. I like a neat and orderly house...not a perfect or spotless house, but just neat and orderly. I like when everything has a place, even disorganized junk. I prefer to restrict mess to one designated location, usually out of sight from company and easy to put away if the cleaning lady or visitors are coming. I like the kitchen cleaned every day and put back into place, and I like my living areas free from chaos.

Unfortunately, DH is kind of like Pigpen from Charlie Brown...a cloud of mess and chaos follows him everywhere he goes. I always joke that I can see his path through the house because of the trail he leaves behind. He works very hard to try and pick up the mess he creates and clean up after himself, but I would have to say that for every 10 things he cleans up, he messes up 12 (in fairness to DH, he has drastically improved over the past years...he used to mess up 12 things, then mess up 12 more, and not clean up any of it!). It is a losing battle for him, and it amazes me that he just cannot even see all the mess he creates, especially when I look around and it is as if big neon flashing lights point out all of the mess.

Normally, I just pick up after DH and return my living space to order. But lately, with all that has been happening, I just cannot stay on top of the mess that DH creates...not to mention the havoc Micah now wreaks on the house, and my own laziness about putting things away the past few months. We still have the house cleaned every week, but I am sitting here tonight, focusing on the mess around me. In our last renovation, we removed many of the walls on the first floor, so from the position in the dining room where I blog and pump, I can see the mess in every room of this floor all at once. The buffet in the kitchen is piled high with books that Micah has ripped that I need to repair, Maya's birth announcements that I haven't had time to address and send out, a stack of thank-you notes I've written for all the wonderful gifts for Maya's baby naming that I still have not finished or sent out, my pile of work/office things that are without a home, the drawings for our home renovations, and then a pile of....cords, technology, papers and crap from DH that definitely does not belong on the buffet. The kitchen counters are covered with bottles and jars that do not fit in the cabinets (largely because there are now things that do not belong stuffed in the cabinets...like empty mason jars and baby food jars). We have the oatmeal container from DH's breakfast sitting out (because he never remembers to put it away). There is a 10 foot pile of mail on the front table (we get WAY too much junk mail, DH and I are both terrible about sorting through it, and I do not even have an office or a cabinet yet to file away my things). Back before I was married, I would have just dropped most of it into the trash when the pile started to offend me and solve my problem, but DH...well, he does not like to just throw anything away without inspecting it himself. I have a feeling waking him up now to inspect everything would not be well-received.

I miss my days of an orderly house. I am certain that much of the mess we face has a lot to do with the fact that we've been living in a house that is way too small for us for several years now. We do not have a bedroom for Maya, I do not have an office, we have no storage space, so even if we wanted to put everything away, it simply does not fit in this house. It may also have a lot to do with the fact that a few months back, when I thought we were only weeks away from moving out for our renovations (and I was at the tail-end of my pregnancy), I gave up fighting the mess because I thought it would be easier to deal with when we moved.

I have to say, I'm looking forward to moving. I cannot wait to throw out some of the crap in the house. I cannot wait to have enough rooms for everyone in our family and some storage space. I cannot wait to have some order back in my living environment. Most of all, I cannot wait to have Mom back home with us so we can all attempt to take some control of what has happened to us. I am sure my mother is having a hard time with the lack of control in her life now, too, and I completely understand that.

Maya woke up on the early side this morning around 7...thanks, in part, to DH making a lot of noise snoring noises. I cannot wait until we can put Maya in her own bedroom! Micah slept until about 8:30...I tried to get DH awake to go get Micah before his yelling woke Maya again, but no such luck. We ended up bringing Micah into our room, and he cuddled with us for a while. We all moved downstairs for breakfast, and I ran around trying to get our clothing and things ready for the day.

Micah has been trying to dress himself more and more everyday. While I was organizing our swim bag, Micah decided to help get himself dressed - he pulled his swim diaper over one leg of his pajamas. Eventually, we decided to help Micah out and got him completely dressed for swim class. Today, we put him in an Elmo sweat outfit...I think he may never wear anything else again!

Once again, swim class was great. Micah is really making progress and loving the water. Now, if I could just convince him that he shouldn't DRINK the pool water, we'd be in business.

After swim class, we drove up to the nursing home. When we arrived, Mom's friends were visiting and my mom was finishing up physical therapy. When she returned, we all sat together for a while in the cafe area talking. Mom was doing great, and sporting her new purple beret. My mom decided today that she wants to shave her head - her head is itching and she just wants all the hair gone. I think it is a great idea, so tomorrow we are going to try and make that happen.

I think we finally have the lease all sorted out and in hand. The owner/agent of this property is kind of a pain in the ass...after dropping off the lease for us the other day, she now wanted to change the terms and the signatories. It took us a few hours to sort it all out, but I think we are all set to return the lease to her in the morning. I have a feeling she is going to be a thorn in our side this next year.

This afternoon, shortly after my mother returned to her room, the "customer service representative" from the nursing home came to speak to us. We gave him some feedback about our experience there, but I think other than listening and nodding, he has no authority to do anything.

After my mom's friends left, we took turns visiting my mother. My father said his goodbyes, and DH took the kids outside for a bit. I sat with my mother (and Krystal) and read the blog and a few other messages to my mom. We tried to order some cortisone cream for my mother's head...her skin is so itchy right now!

Before we all left, Mom got her Delicious kisses and said goodbye to Micah. He was cute..he said "night night" to Mom, and he also crossed his arms over his chest (the sign for "love') when she said "I love you" to him. We left mom in good hands with Krystal, and we told her that there was fruit and a sandwich in the fridge for mom (instead of nursing home dinner).

On the way home, DH and I decided to stop off at IHOP for dinner with the kids. Both were awake and cranky, it was almost 6 pm, and eating dinner out seemed easier than coming home and cooking. Maya was just happy to get out of the car and nurse. Micah actually ate fairly well - we ordered him a grilled cheese sandwich and a cup of fruit. He ate most of my eggs, one of DH's pancakes, a few bites of the grilled cheese, and some of the fruit. Unfortunately, Micah spotted the ketchup during dinner, so we put some on his plate. He loves to dip things in ketchup. He dipped his grilled cheese, and then, much to my dismay, he decided to dip his apples into the ketchup! Yes, disgusting. But Micah seemed to love it.

We made it home around 7, and we spent the evening relaxing together again. My mom called around 8:15 (she had some questions about medications, she wanted a fan for the room, and we needed to sort out the aide issue for tomorrow). I gave her answers about medications, I told her I'd call Dad to see if he could figure out the fan issue and promised I'd bring one tomorrow if they did not find the fan tonight, and I contacted the manager for her floor to discuss the aide issue. Apparently, they say they have aides covering her indefinitely right now, but they will not be using the outside company (and Krystal) tomorrow. Instead, they apparently have some companions on-staff, and will be using one of them. We are waiting to see if Mom feels comfortable with the person they send (or if they decided to terminate the sitters after tomorrow) - if my mother doesn't like the person they send or if they cancel the sitter, we'll contact Krystal and re-hire her. We've already asked Krystal if she will work with us when Mom leaves the nursing home - we are hoping she'll be able to work 1-2 days a week and fill in whenever the other aide is unavailable.

Micah went to bed around 8:30, and Maya fell asleep for the first time shortly after that. Maya woke up again a little after 9, but was back down again within 10 minutes. So far, both children have slept through the night. Okay, I'm off to try and clean the house a bit before everyone wakes up.

Message from Mom

2010-10-17T19:35:00.001-04:00

Okay, folks. There is no way that I can mention or physically write thank yous to each of you for your prayers, well-wishes, calls, gifts and visits. I'm taking an enormous breach of Emily Post etiquette and posting on the blog instead. My parents would be horrified but it is just going to have to be this way under the circumstances.

To those of you who have sent prayers, cards, gifts and well-wishes, I can never thank you for the encouragement and the spiritual lift it has given me. Words cannot begin to describe how much it has meant to me. I couldn't even begin. I have never been so moved in all my life as I have been the past few weeks. To say I'm a very lucky woman is a small drop in a large bucket, and I don't know how I would have gotten along without any of you.

I cannot begin to enumerate each individual, but you know who you are. What's more, I know who you are.

The birthday party was beyond all my expectations. The fact that my friends came in from out of town was beyond belief...and to bring me my purple French beret! Now I can speak French: "French toast, French fries, Voilà, allez cuisine."

The most touching things occur and I can't even begin to tell you what they mean to me. Thank you thank you thank you.

I also wanted to thank my cousin F for the use of your wheelchair van. It made my day! It was a mark of generosity above and beyond, and it means so much to me.

I also wanted to thank those who made sure my family did not go to bed hungry with all of your food deliveries. How can I thank you for that?

The Party

2010-10-17T05:01:00.002-04:00

What a day! Today was wonderful - I cannot believe how everything just fell into place and worked out as we had hoped! I think we were all nervous and hoping that today went well.

The kids slept until 8:45 - it was so nice that they gave us the extra time to sleep this morning. My mom called around 8:30 to tell me that she was awake and all was well. She had not slept much last night - I think she was nervous about today. We told her that we would be up to get her around 11:00-11:30, and we would bring everything she needed.

DH and I scurried around the house trying to get ready. He got up and showered first, and then we took the kids downstairs for feeding and dressing. DH still had to finish setting up the van - we had to install the two car seats in the back row so that we could all go up together in the van. I had waited until the last minute, and naturally I had to ice the cupcakes this morning before we left. Luckily, I went simple, so it only took me 20 minutes.

We made great time getting up to the nursing home, and we arrived right around 11:30. DH stayed down in the car with the kids while I went upstairs to get my mother. My mother was sleeping when I arrived, so I waited a bit for her to wake up. I brought her an outfit, so Krystal, her aide, helped her get dressed and use the commode. We gathered her medications for the afternoon, got mom situated in her wheelchair, and were ready to head downstairs by 12.

My mother kept asking if we were waiting for transport, and when I told her that we had F's wheelchair van, she started to cheer! She was so excited to be in a "real" car again and not need to wait on transport. We found Micah playing in the front seat of the van and DH holding Maya. We opened the door, rolled mom right in, and locked the wheelchair down. We had invited Krystal to join us, too, so it was a bit of a tight fit for DH in the van. A few minutes later, and we were off to the chinese restaurant (with both children screaming in the back). My mother was cute...she asked me if I had more Tylenol for her, and I got worried and asked why. She said that she was just anticipating the headache the kids' screaming was going to give her!

We arrived exactly at 12:30, and my father, brother, Paige and Peyton were outside to greet us. Things were a bit hectic as we unloaded (we had a lot of stuff and two crying babies), but we easily got mom out and headed inside. Krystal was a huge help to us - she helped us get everything inside and set up.

Everyone was already there! 17 of my mom's closest friends, and 2 surprise guests from out of town. I think my mom was thrilled to see everyone, and she was definitely surprised by her out-of-town guests. We had lots of cards for mom to open, flowers from her friends that we used as a centerpiece, a brand new purple beret from Paris for Mom, and my brother and the girls brought Mom some desserts to keep at the nursing home.

The food started to arrive quickly. We planned it that way because we were not sure how long my mother would want to stay out. She had quite an appetite! Our meal included egg rolls and spring rolls and vegetable dumplings for the appetizer, and then beef and broccoli, chicken with cashews, vegetable lo mein, szechuan string beans, and eggplant for the main course. Dessert, of course, were chocolate cupcakes! I sat across my mom and nursed the baby. My niece, Paige, spent most of the time taking pictures of everyone with my camera.

We had one "emergency" - I was so worried about packing everything for my mom that I overlooked an important point...we had no diapers for Micah! Naturally, he needed a diaper change from the moment we arrived at the restaurant. Normally, we keep spare diapers in our car...but we had the wheelchair van instead of our normal car. Thankfully, one of my mom's friends found an old diaper in her car...it was a size too small, but it did the trick.

All four of the kids were great. Paige and Peyton behaved nicely and were running around playing with everyone's cameras. Paige attached herself to one of our friends for the day, and Peyton attached herself to another. Micah was quite well behaved - he sat next to me eating or chased "P" around (mostly Paige, but he now calls both of the girls "P"). Maya nursed and slept most of the time, but then she hung out on Grampy's lap for a while, and even sat up by herself in a chair for a bit. She has recently discovered her toes, and loves to chew on her feet whenever possible.

Micah is currently at an awkward stage size-wise right now. He is so skinny that the 18 month size is too big in the waist, but he is starting to outgrow that size height-wise. He walks around with his pants falling down all the time (which actually helps the length problem), but because he is constantly yanking up his pants, he is very aware of them. He has developed two new habits - yanking his pants up, and taking them off. We only had one incident of him removing his pants in public today, and I don't think most of the guests noticed! We have to watch him carefully - you just never know when he'll drop trou. (Hey, we have to watch one of my mom's friends, too...we never know when he'll drop trou, either!).

Everyone socialized and had a great time. Everyone was snapping photos and taking videos, and it was truly perfect. Mom did a great job - she was awake, interacting, definitely eating, and able to hang in there for 3 hours despite the fact that she had been awake all night.

At 3:00, she suddenly got antsy and needed to leave. We have to work on her patience! From the minute she said she wanted to leave until we got her out the door and in the car was about 10 minutes, but about 30 seconds after she told me she wanted to leave, she was telling me that I needed to hurry up. I think she forgets that moving 2 babies, an aide, and a person in a wheelchair takes some effort and coordination (not to mention saying goodbye to a room full of 17 Jewish people). The first thing we did was straighten her up and put her arm rest on the wheelchair so she could safely travel. While we were doing that, she was snapping at us about getting ready and going, and I pointed out that putting her armrest on was the first step to going.

Once we got Mom loaded in the car, the ride back was uneventful. We were back at the nursing home by 3:30, and Krystal took Mom up to settle into bed while we followed behind. I read Mom the blog and her messages and took care of a few other odds and ends before heading home. We were back home tonight by 5:00 pm!

It was a quiet evening with the kids. We played, watched some tv, and generally relaxed. Micah has an ID tag of DH's he likes to wear - he puts it on his head, and then he starts playing his "air guitar." He puts one hand up to the side and takes his other hand and strokes up and down on his belly. He gets a huge grin if I say "air guitar" while he is playing. We're working on making guitar noises next. He also started singing again tonight - I love hearing his little voice starting songs now.

Around 6, I put on an episode of Sesame Street for Micah. He was so excited that he grinned, clapped, and started dancing. After Sesame Street, Micah found a baby doll that our friends Amy and Sam had brought him a few weeks ago. He was holding it, kissing it, and taking care of it. He then took the diaper off, and next thing I saw, he had a pair of Maya's socks and he was trying to put socks on the baby (my mother would be so proud!). I helped him with the socks (and shoes, too), and then Micah was finished with the doll. After he was done, I searched the room for the baby doll's diaper. I searched and searched and could not find it. I looked in all the areas where Micah was playing, and then an idea popped into my head...I looked inside the diaper pail, and lo and behold...Micah had thrown the baby's diaper in the diaper pail! We were hysterical. He already does a better job of cleaning than his father!

Maya happily played on the playmat for a bit, and then nursed and snuggled. Mom called at 8:30 pm to say she was still awake and had gotten her pills. I wished her a good night, and she had a chance to talk a bit with Micah before bed. Just before DH took Micah up to bed, I glanced over and noticed that he was sitting with his arm around Maya, she was sitting up, and they were both staring at the tv. I was amazed...she is starting to look less and less like a baby every day. I think in another blink, she is going to be off and moving on her own.

My mom called again at 5:00 am, shortly after I started blogging. She said she did not sleep much (of course, she had been in bed since 4:00 pm) and was getting ready for the day. I think she has not been sleeping as well since she got an aide, so we do need to think about how that is affecting her sleep.

It is days like today when I start to think...or hope...that it will all be okay again. My mother is looking so good that it is hard not to jump there. And then I remember. I want so badly to hold on to this time together. But every time we celebrate an event, I can't help but wonder if it will be the last time we are all together to celebrate. I hope that I am wondering the same thing again next year on my mother's birthday...and the year after that, too. I guess I'm still hoping for that miracle and trying to be thankful for the time we have left together. But if I could freeze time for a while, I think I would.