I remember my wife saying with tears in her eyes, “he falls down so much.” I had been thinking the same thing for some time back then, but I guess I was burying it. I was really hoping if I didn’t give it voice, maybe it wouldn’t be reality and it would just go away. The reality was, we both knew something was wrong, even though we didn’t know exactly what. We’d watch other kids zooming around the park, same size and age as our son, but he was behind and he kept going down.
He did start walking pretty late, you know, and kids do strange things. They have all kinds of crazy ailments and little physical peculiarities when they’re really little, right? And people even tried to calm our developing fears, saying things like, “really, it’s usually nothing.” There we were, desperately hoping for nothing.
That was the start of our journey to diagnosis. A lot of families get alerted right at birth, faced with what must be a tsunami of mixed emotions in celebrating a new baby while learning that their new child has a serious condition. But like so many families, our son didn’t “present with” any symptoms. He was more than a year and a half old. From that point it quickly felt like a mind-bending whirlwind of doctor visits, tests, dozens and dozens of hours of Internet research, and listening to medical professionals talk at us in what sometimes seemed like a foreign language.
There are so many ways to process your child’s diagnosis. One of the ways I tried to cope was by attempting to become an instant expert. I wasn’t going to let myself become overmatched in meetings with doctors. I’d always be able to understand and anticipate with the right questions. I’d learn to speak fluent medical. I wouldn’t miss anything. I’d take a lot of notes. Like a good dad, I’d figure it all out by digging in, and just work really hard at it. For an initial long period, I treated my son’s diagnosis like a problem – a really, really big problem – that I could solve with enough focus and effort.
I’ve come to recognize there’s no solving your kid’s diagnosis. Sure, getting a lot of information can make things easier to understand. It definitely helped make the path forward seem more clear, even if I didn’t really know where exactly we were headed. No solution, though; instead the post-diagnosis experience seems more like an endless treadmill of figuring some things out, only to be presented with more things to figure out, and on you go. It’s essentially typical parenting, but just with a brutally higher degree of difficulty tossed into the routine.
I’m sharing this with you all for a few reasons. For one, I find it therapeutic to get things out on paper. When I can take all my racing thoughts and put them on a page, I feel a sense of relief. Also, though sometimes I feel like I’m the only dad in the world who is going through these challenges, I know I’m not alone. I know there are many families who are having similar experiences.
As I continue to share with you all, I will be going by the pen name ‘CP Dad’. Not because I don’t want to share who I am, but rather to give my son the privacy he deserves. I want him to have the choice of when and how publicly he wants to share his condition and physical challenge, and he’s too young for that now. As he grows older, hopefully we’ll figure that out with his input, and maybe figuring that out is part of this challenging journey, too. It’s a journey that’s about so much more than CP, or any other specific diagnosis for your child or family member. It’s about navigating it all, gaining some perspective, understanding and even belonging when your loved one stands out because of their special need. We are all learning as we go.
– CP Dad
Read the next post in this series!