Adam and I have the same issue that so many couples have...where he hits the pillow and is asleep two minutes later (not an exaggeration) and I take forever falling asleep. Inevitably as I am trying to convince myself to sleep, my mind starts to drift to both our hope for the adoption and C.
I feel so much more in control of my life that I did a year or two ago. C's doctors are all settled and we have regular appointments. For the most part, I know who to call for what he needs...or at least who to call to tell us where to look. But the part I still struggle with each night before I fall asleep is the part I can't control--the progression.
When C was diagnosed, he still stood and cruised along the furniture. I knew he had stopped walking out into the room but, knowing so little about SMA at the time, I thought maybe we could do intense physical therapy or maybe I could work with him a ton every day and he would be strong again and walking in no time. We have several friends and family members with children with different diseases and syndromes, and so many of them had made great leaps and bound over what their doctors thought they would physically accomplish...and I thought "My son can certainly do that too!"
And then, I learned about just was SMA was....A "progressive" disease. In January it will be two years since his diagnosis, and not only does he no longer stand independently, but he has recently stopped crawling. He has lost a ton of arm strength and falls over easily from a sitting position. The disease is such that it only gets worse--and you might be able to maintain for awhile but it is never getting better.
This is a fact that I fully understand and accept, but I won't say that personally that's not hard for me. I am a problem-solver and a fixer, and to give me a problem that can never be solved that involves one of the people I love most in this entire world is probably the greatest trial I will ever have. So at night when I'm trying desperately to go to sleep, I start thinking back about my day and wondering if I did all I could for C today and if there is anything I am forgetting. And I start to worry about his future and what strength he will lose next and how we can best help him. I never want to think or feel that things progressed with his disease and there was something I could have done to stop it, or that I didn't provide him with every opportunity. Even typing that now seems silly, because of course it is the disease and not me...but the thoughts still go through my head. And then, inevitably, I convince myself to stop thinking about it all and go to sleep because there is nothing that can be done about it right now.
So then the other day, I was eating a Dove chocolate (cause they're awesome) and there was this little quote inside, "Do not pursue the past. Do not lose yourself in the future. The past no longer is. The future has not yet come." And after a brief moment passed where I wondered if God made chocolate, I was thankful to Dove for giving me just what I needed to hear. And I started thinking about that word "progression." Back in History class the word always seemed to have a much more positive connotation and the teacher was always using it to describe the invention of the printing press or the railroad spanning the country. So maybe I was thinking about it all wrong. Maybe if C's muscles pull off some backward progression--well that's their loss. You can go back to thinking the world is flat, but it won't do you much good. But my son can still have an amazing and overwhelming amount of positive progression in his life. He is very intelligent and compassionate, and I know he will accomplish much. And someday soon our family too will progress, and C will have a new brother or sister we will love just as much who will be a shining example to him and a best friend.
So today I choose to embrace progression and be thankful for it, so that I might teach my children might find happiness in each day, and the great amount of happiness that is to come. And maybe eating a few extra chocolates isn't such a bad idea, either.