More changes for Noah on the therapy front today. Medicaid has only authorized 14 more sessions until the end of December which means we can't continue doing twice a week or we'll run out of sessions too soon before we can get more approval. So we now have to go back to doing physical therapy once a week now, rather than twice, and because we have to temporarily take a break from occupational therapy until we hear from Medicaid that means that Noah will now only get therapy once a week rather than three times weekly. It's not what I would want if I had a choice. I like the way things are now, I like going three times a week, I think Noah is responding tremendously well with all three therapists, I like our routine. In fact I'm a little saddened by it.
I overheard another mother today at therapy talking about alternative therapy that she's taking her child to in California soon. And I know of two other mothers that took their children to the NAPA center in California for three weeks of intensive therapy. I came home feeling like I'm not doing enough for Noah. I feel forlorn.
I do my best to put on the brave warrior outfit everyday. But I'm just as scared as the next person, just as fearful about the future. Chris doesn't have these fears. He fully believes Noah will learn to walk, talk, run, ride a bike, drive a car one day, get married and have children and live a beautiful life. I however want a promise. I want a guarantee that he will. I want God to put it writing so I can frame it my hallway and look at that written promise every morning. My head swirls with thoughts about today, about tomorrow, about years from now. It probably goes back to the "planner" in me. I want to map out everything thinking I somehow can change things for the better, make things different. But I can't it's like holding sand that slips through my fingers. And it's not that I can't accept Noah for whatever he will be able to do, it's just wanting the very best life for him.
There are so many levels of guilt, and I think each and every family carries that to some extent. If I had done this, he wouldn't have fallen in the pool, if I had changed her diaper first she wouldn't have choked on the cracker, if I had known Noah was in danger he could have been born sooner. There is some blame, some constant need to fix what we cannot undo. Everyone has had a moment in their lives where they wish they could go back and do something over, but this is on a much larger scale. Does that mean that we're a little broken? Maybe.
I see Noah doing things everyday that he couldn't do the day before, and I get so hopeful, I try to feed off of that everyday, all the positive things I see awakening in Noah. The older he is getting the more frustrated he is becoming with the fact that he cannot grab a toy, that he can't get things to his mouth. He squeals like a little piglet when he doesn't get what he wants or can't do something. But at the same time he is so driven and determined that I pray that if I give him enough time he'll find a way to get around his road blocks to accomplish all that he is trying to do.
My heart has also been distracted with thoughts of another little boy that is struggling right now. His name is Santana and he's one of Noah's listed friends on his website. He's in the hospital now and has been there for sometime. He's struggling, his mother sends updates that break my heart, as I know what she's feeling, every word she says makes me cry. I want to help her, help Santana, I want to fix it for all of us and I can't. It's impossible for me to stop thinking about them. I ache for all mothers that are holding onto their children and trying never to let go, maintaining the hope that God will help, that he'll heal all of our babies. I have to keep believing, it's all that there is.
Stacy, Chris & Noah