Friday, October 22, 2010

Brave and Bald


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.

Thursday, October 21, 2010

Family...chosen

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.

Wednesday, October 20, 2010

Uneventful

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.

Tuesday, October 19, 2010

New Normal?

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

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.