Two of my Nest friends came over on Saturday and brought us the most amazing, amazing gift. I am still in a bit of a daze about it all, and wish I could better express my gratitude then just saying 'thank you', but I don't know what else to do. The amount of people who contributed to help us is overwhelming, the amount of money they raised is overwhelming. I know it took a lot of time and effort on many people's part also, and I can't say thank you to them enough (especially Jess and Melissa, I think helping our family has become their part time job).
My favorite favorite movie in the world is "It's A Wonderful Life" - I keep telling people I feel a little like George Bailey. We watched the movie the other night and while I always cry at the end, no matter how many times I've seen it, I cried even harder this year. We have so many friends who have done so much to help and I know would do anything, give anything if it would mean Jack got even a little bit better. Friends we've never met, friends we'll never meet in real life, but who cared enough to give something to a virtual stranger.
All I can really do is say thank you - thank you for the financial help, thank you for the dinners and homemade desserts (all so appreciated more than you can ever imagine), for the diapers, the detergent, the prayers, the prayer cards, the thoughts, the kind words, for everything. If nothing else good ever comes out of this, the good in literally hundreds of people has come pouring out all thanks to our little Jack. He is a special baby.
I wish I had better news to share about him though. We did get what we thought was good news last week, that his muscle ultrasound was totally normal and the metabolic specialists thought he didn't have any kind of metabolic problem. But I realized today talking to the doctor, it's not really a cause for huge celebration. Jack is still sick. He still has all these things wrong, and he still cannot breathe without the vent. The fact that many bad things have been ruled out, doesn't mean there aren't thousands of bad things still left.
They're now focusing on two neuromuscular diseases they think might be Jack's problem, one of which is so rare there is only one doctor specializing in it out of Seattle. They've sent him all Jack's records and we're waiting to hear back. While neither of these diseases are good, neither are necessarily fatal either, nor or they progressive, meaning he wouldn't get any worse than he is now.
Except for the whole lung/breathing thing. Nothing else matters if they can't get him to breathe on his own, and he is not moving any closer to doing that. They're going to have a big family meeting with us on Thursday or Friday to discuss the results of all the specialists who've seen Jack and decide where to go from there. I didn't get a real good feeling about it from the doctor today. At all.
But like I said before, I am trying to focus on today, because there's not much else I can do. Today, my mom and aunt and I went and visited Jack, drove through snow and ice to see him and agreed there is no one else in the world we would have done that for (I said maybe George Clooney but no one else agreed.... ) We all got to hold him, and love him, talk to him, kiss him. My aunt sang Christmas carols to him, my mom cried because she had never held him before. I told him if kisses were cures he'd be the healthiest boy in the world. Today, again, he was here, and loved and there's nothing else I can really do.
I am going to buy him this tomorrow as his Christmas present, and put it in his crib at the hospital, the nurses said he can listen to the music, and we can even record our own voices on it. I'm going to use some of the money that everyone gave to us to buy it. I'm going to tell him it is a gift from so many people who love him and want him to get better.
I always thought Jack looked like my grandfather, who I loved very much and died about 10 years ago. Tonight we were watching the Giants game, and they showed a restaurant in Manhattan - my grandfather's favorite restaurant, one he and his wife ate dinner at almost every single night. What are the odds, of all the restaurants in NYC, this little German restaurant would be the one they showed? I felt like it was a sign, that he's watching over Jack, and he's taking care of him too, and no matter where Jack is, he'll be with him. It made me feel a little better.
Now I need to go to sleep before my little angels wake up (who lately have not been too angelic at 3 am when they're screaming). Thank you again, I can't say thank you enough. PJ was completely blown away, my mom cried. We are all so grateful.