I love Braxton more than words. He has given me incredible joy. His first smile when he was lying naked after a bath, the first time he reached out and touched my face, when he coos in the morning, the way he raises his eyebrows when he hears something interesting, seeing his "big eyes" after months of them being closed, watching him swim, his cuddles, the closeness when he learned to nurse, "singing" with music, his little snore when he's finally asleep...so many precious moments.
The doctors say the "risks" are growing as his conditions become increasingly complex. But when asked directly how long they predict Braxton will live they usually say they don't know, and that's just it, they don't know. However we finally did get a life expectancy guess, a matter of years, single digit years, ten years would be pushing it. The crazy thing is, from where I am right now ten years seems like a very long time. The last eight months have been such a battle, I've gone all in, used all of my mental and physical energy, there's no way I can do this for ten more years...
But I will do it, beacause I know this little boy in my arms is worth everything. He might not be the boy I imagined he would be, but then again when is the future ever as we had imagined it? Perhaps our nighttime reading might be braille, his running might need equipment, his school might be special.
Braxton's needs are great. That makes the future unpredictable. We all crave control. I can not control or even direct Braxton's future. It us out of my hands, although I keep fighting to get him the best. Best food, breastmilk, even if I can't nurse. Best doctors, surgeons, and quickest treatments. Best therapies and supports. I am learning to advocate, when to push, when to listen, and when its ok to just cry.
Ten years of cuddles is a lot. Braxton can teach me so much in ten years. One day we will be home from the hospital again. And some day after that it won't be survival mode, it will be life. And after that I know time will zip by, and there will be many more precious memories.