Saturday, September 11, 2010

Seeking a new normal

In the past, I always thought it was terrible to contact someone in the midst of a crisis such as this. I thought a call or a note during a time of great tragedy was…intrusive. I did not want to seem like someone rubber necking at an accident on the highway, or gawking at a train wreck. Instead, when I heard of terrible things, I would think “that is awful, my heart goes out to them, I wish I could help, but better not to intrude on their privacy.” I will never again think that way when I hear about tragic news. If I remotely know the person, I will offer up my words of strength, or offer to help, or just let them know that they are not alone and that there are people out there, even far away, who care what happens.

Because those words of support and kindness to us during this time have truly…well, humbled me. It means the world to me to know that people care, even people whom I haven’t thought about (or who haven’t thought about us) in years. It matters. It is wonderful to feel that strength and support and sense of community, and to know there are prayers of hope going out across every religion and faith… they sure can’t hurt, or as my mother says, “we’ll take it all.” In the future, I won’t hesitate to offer it ever again. I’m sorry for all the times I stayed back out of “respect” and didn’t offer the support, because for me, your support is empowering. I think this knowledge will forever change me…and hopefully make me a better person.

So, if you are out there reading this, or wondering what to say or if you should say anything, my answer is yes. It helps to know that this touches you and that you care about us. It helps to know that there are people out there pulling for us. Every little bit…helps. I wish I knew that many years ago.

The kids gave us a bit of a break this morning...we had silence until just about 9:00 am when Maya woke up, and Micah slept until almost 9:45. Our babysitter arrived at 9 again today, but we were unable to get Micah going until about 10:30. My father arrived around 10:45 to go to synagogue with DH. After everyone left, my friend Niki arrived with a stack of kid-friendly food for Micah (I'm hoping that will help us to get him to eat), and then I took Maya and headed up to the hospital.

When I arrived at the hospital, mom was in bed, resting. She was sleepy again today - chatty, sharp, but sleepy. I helped her set up to eat lunch, but she didn't have much of an appetite. We chatted for a while, and she asked me to read the blog again and all of your wonderful messages. When we discussed the blog, I told her I was amazed that she had so many lifelong friends, and she told me that friendships have to be "cultivated." Another pearl of wisdom...I think I could learn a lesson from her in cultivating friendships.

Mom snuggled a bit with Maya, and then I sat and nursed while Mom and I chatted. She seemed a little flat...a little sad today. She said she had been thinking a lot about her funeral, and I cringed. She reminded me again that she hates the poem "Aishet Chayeil" ("Woman of Valor")...something I already knew. She said that she would like to find something else to read at the funeral...and she mentioned that she loves the poem on the frame her co-worker brought last week. I was thinking about the song "You are my Sunshine," but wasn't sure if that was appropriate to say. She informed me again that she wants to take Nugget with her...and her hat that her friend made. She also asked whether it is permitted to have a shofar blow at a funeral...she told me she was moved by the sound last night at dinner, and she thought it would be powerful to have that at her funeral, graveside. I told my mom we would do whatever she wanted, and that in my opinion, anything is possible. I know we need to think about and discuss these things, but I just hate hearing it, because I hope there is still much more time for us.

She again said she couldn't believe this was happening...a number of times she said "How does this happen?" and "Who'd have thunk it?" She said she always thought she and my father would have more time together once she retired next year, time to travel and spend together. I could just feel her sadness for what she could be losing.

She started asking some questions again about GBMs. She said she had asked the nurse for information about GBMs so she could share it with people at work and her friends. I told her I had written a post with the information I found, and I read her most of the post I wrote a week or so ago. I tried to remove the truly negative information, but the whole discussion was a bit depressing.

After our chat, I redirected our energies to Maya, since she is always good for lifting the spirits. She was all smiles and laughing as Grammy kissed and tickled her. I thought we were back on track until my mom looked at her and said, "What will you remember about me? Nothing, right?" My eyes welled up, and I said to her that hopefully there was plenty of time left for Maya to form her own memories of Mom, but if not, I'd make sure she felt like she knew her. I'd show her all the pictures of them together, and videos, and I'm sure there will be an endless supply of stories. She'll know that my mom always says "a million and nine" when she is picking a number to represent the term "a lot." She'll know that my mom says things like "same difference" and "6 of one, half a dozen of another" instead of saying things are the same or there is no difference. Maya's world will be filled with pictures and stories of my mom, and her food, and her sayings, so she will be a presence in her life.

Once again, I deflected from the sad and tried to cheer my mom up. She was looking tired, so I sat down and got quiet so she could nap. About 10 minutes later, my dad arrived...and much to my surprise, he had DH in tow! DH, Maya and I stepped outside to give my mom a chance to rest before physical therapy (and catch up a bit with my father).

I joined my mom for PT around 3:00 (and DH brought Maya by for a bit, too, to cheer for my mom...he even held her up and in his best "Maya" voice cheered, "You can do it, Grammy!"). From my perspective, she has made some significant progress...she walked the length of the parallel bars 3 times, and she was standing. I asked questions about simple exercises we can do with her to build the strength in her left arm and leg when she is not in therapy. mom is having problems with PT. From the moment it begins, she says she is too tired to do anything, and every other word out of her mouth is "I can't." She always says she needs to go back to the room and take a bathroom break and a nap...I think maybe she is trying to avoid the PT. I tried to remind her that she is a strong person, and that she can do this. I know that she has always told us that you have to push through the tough things because the end result is worth it, and that you have to believe that you can. I can see that she gets scared...she thinks she is too weak, so she is afraid to try. She needs to believe that the therapists have her, and that they are pushing her because she CAN do it, and they will not let her get hurt while she is trying. So, Mom, when I read this to you tomorrow, hear me say to you that you ARE a fighter, and you HAVE to trust that you can push yourself. Each little bit that you do brings you more energy and strength - even when it feels like you can't, you have to trust the process to get you to your goals. You have to go big, with everything you've got.

I'm especially concerned because they have informed us that if she does not start finishing her therapy sessions and pushing herself a bit more, they will have to release her early from Rehab. I'm worried because Rehab is the best chance she has to regain some of her strength - the at-home therapy just isn't as good, and we need her stronger. Every day, that left arm is getting stronger, and I'm hopeful that if she can regain more strength, maybe we can get her crocheting again. The good news is that they are starting her on a medicine called Provigil to fight the fatigue so we will see if that helps her combat the exhaustion.

While Mom was in PT, two of her friends showed up. DH, Maya and I left to get home, and Mom visited with them. I hear through the grapevine that three other friends had a great visit with her later in the afternoon, too.

We made it home in good time, and DH made Micah dinner and then took Maya to services while Micah and I had some good mommy/son time tonight - something we both needed. I've been firmly planted on the couch catching up on the DVR while DH snores loudly across from me.

I guess I've just been feeling a little blue today...I'm worried about mom's increased sleepiness, and I'm worried about whether she is going to have the strength to do radiation. I hope the doctors are right...but I'm worried. I don't want her to be wiped out, and I only want her to undergo treatment if it will help...make her a bit stronger after it is done and buy her some good quality time. I don't want this to be the end for her...but if it is, I want to make sure she can come home. How do you know when the time is right to fight, and when the time is right to let go? I hope that my mom is able to tell us, and that we are strong enough to listen to her. But I hope that if there is a chance this can work, we can help her choose to fight, and give her the strength when she is afraid she cannot do it herself.

So, tonight I am wallowing a bit. I am going to set the computer aside, watch some junk tv, pump milk that Maya can't drink yet, and hopefully go to sleep at a reasonable hour. By tomorrow morning I'll make sure to find my smile again, go to the hospital to spend time with my mom and cheer her on in PT, read this blog and your messages to her, and entertain our visitors - often the high point of the day. What is it that they say....lather, rinse, repeat? I just want to get through the next 4 weeks and bring her home...find a new normal.

In the next week, I want to make time to do the things I normally do this time of year...a trip to the orchard to get my apples to make applesauce and pick up those delicious caramels (and possibly some other fruits), make blintzes, and perhaps bake a few pies. I hope to get back to playing mah jongg on Tuesday nights, and I'm looking forward to starting swim lessons with Micah. Next week is also Micah's first week at preschool...a big step in his life! is to finding a new normal.

1 comment:

Circus Princess said...

My heart goes out to you and your family in these hard times. Reading your words have me surprised at the normalcy and warmth in this trying situation. Sending all my love and wishes of strength.