I cant say that tuesday march 26 2013 started off like any other day...i mean afterall we were in austin waiting to get an MRI at the urging of our neurologist who wanted to figure out exactly why dom was so tight. but really while we were nervous, we were somewhat confident that everything would be relatively ok.
The day started off on a vigilant but confident note.
The day ended with a diagnosis that we didn't quite understand and a future that (at the time) seemed 100% uncertain. We didn't lose anything tangible that day--if anything we gained information on what made dom himself--but we lost the intangibles. we lost predictability. we lost the confidence in what we were doing as parents. Fundamentally we lost the assurance that everything would be "ok".
But here we are two full years later and things are more than ok. In fact things are fantastic. Things are moving along at light speed. Dom is in about 8 hours of therapy a week and is on the verge of being mobile (either by walking or crawling). He's struggling with words...we had some and strangely lost them...but manages to communicate his needs in a way to make the folks who know him understand. But more than anything he's a lanky ball of energy and fun.
I wish I could go back to that moment where D and I were sitting in our car after meeting with the neurologist. We were in the parking garage just sitting in silence because we didnt have the words to reassure ourselves that everything would be ok--much less reassure each other. I wish I could go back and tap on the window and just say "hey, you can do this. you have to do this. your son is awesome. now get busy on learning who you need to be as a parent. get to work.". but maybe that message wouldn't have been heeded at the time.
maybe I need the perspective of two years having passed to be able to think that.
I spent a lot of those first weeks post-diagnosis resenting Dom's diagnosis. I resented PMG. I resented cerebral palsy. I was there to fix it. I was there to figure this out. But slowly I realized that PMG and CP are what make Dom who he is--yet they are not the sole definitions of who he is. They're just designations of how his brain looks. And I love everything about this kid....his looks, his laugh, his tendency to pick on his brother, his inability to go straight to sleep instead staying up laughing for up to two hours, his brain deformities, his smile, his long eyelashes, his constant desire to do better and to be better and the levels to which i see him push himself in therapy. i love every single little bit of it with every fiber of my being and to the deepest core of who i am.
so in hindsight its seems silly to think that at one point in time i was afraid of cerebral palsy, because that means i was afraid of who dommy is.
but i don't want to forget those emotions. i don't want to forget how sad we were, and how much we subconsciously [unfairly] mourned for his future [that has yet to be written so doesn't matter] i don't want to lose that because those lows make me realize just how high we are right now and just how good life is. is it what we expected? absolutely not...but it's better. it's made me stronger. it's made me a better father and has added an infinite amount of clarity to who i am and who we are as a family.
i wouldn't trade this life for anything. its utterly exhausting--don't get me wrong there--but i wouldn't trade it for any damn thing in this world.
two years ago today D and I cried ourselves to sleep.
tonight we'll lie in bed and watch netflix as we listen to dommy laugh himself to sleep.
