Last night as I was drifting in and out of sleep it occurred to me that it has been a year (and a month, actually) since J was diagnosed with CP. The event itself was remarkably uneventful. The neurologist we had at the time played phone tag with me for over a week, while we left nondescript messages asking the other to call back.
When we finally got around to talking on the phone all he had to say to me was that my son had CP, obviously mild and that we should schedule a check-up in six months. I could only get one question in on the phone before he had to go. As you can imagine, we don’t see him anymore. Still, a year has gone by and I find myself marveling at the passage of time.
I can still feel what I felt, sitting in our green glider where I had rocked J so many times before, to sleep for bed or a nap or just because. The strange feeling of nothing beneath me or around me, just a vastness, engulfing all my senses. I had only vaguely heard of Cerebral Palsy before, and had no basic knowledge of what that involved. While I grappled with the idea that my son’s condition had a name, I sat, immobile and wondering “ok, now what do we do?” I had never been in this situation. We had a whole condition to take on and with what resources, what experience? I didn’t move for quite a while, until finally I stood up and walked to the computer.
Surely Google would have answers.
After about half an hour of pouring over countless pages on CP, I stopped and cried. It finally hit me, we were in a totally new world and I didn’t even speak the language, how was I supposed to help advocate for my child when I didn’t even get a straight answer from his doctor! How was I supposed to give this boy everything he deserves if I couldn’t even understand what he was going through? I just didn’t even know where to begin.
When my husband came home that evening, he held me and we talked for a long time. We prayed, we cried, and we laughed some too. Sure we didn’t have all the answers but we had each other, our faith and a determination to make the best of the circumstances.
It’s been a year and we have all grown so much. Looking back I can’t believe it’s only been a year. One year. The emotions, the effort, the struggles, the learning, and the determination to get where we are has been profound. We are not the same family we were a year ago. J is not the same little boy, yes he has grown bigger, and stronger but he is also learning something that many don’t learn until much later – keep trying. No matter how often you fall, get back up. No matter how challenging the task, give it another shot. Because in the end, only you can make it happen.
I often sit in awe at how my son engages with the world. He has known no other life, and while I’m sure he knows something is not quite right, he marches on. He tackles obstacles and does so often with a joy I could only hope to possess. I can only hope to match his determination one day, he inspires me constantly.
Only one year has passed and while that really isn’t a very long time, it’s felt like a lifetime of learning, of feeling. A lifetime of joys and pains, of relief and sorrow. This is one crazy journey we’re on but I wouldn’t have it any other way, with my kids and Husband by my side, fighting the good fight and winning.