I don’t think about it often, but there are moments where I have fleeting thoughts about what our life would be like if my son didn’t have cerebral palsy (CP).
What would have happened if my wife hadn’t contracted CMV (cytomegalovirus) at the exact moment that neural migration was happening, resulting in stroke-like consequences?
What would it be like to have a walking, talking son who looked and acted like his older brother and younger sister? What would that be like?
Those moments are incredibly fleeting—in fact, I can genuinely say that I have only stopped to think about it one other time. When my son was about a year old, I had a random dream where I vividly saw him standing up and bouncing on two chubby little legs just like babies tend to do. It shocked the heck out of me to think about that because I’d never considered the thought before.
Here’s my truth, though: Through therapy and daily work, I don’t think I’m trying to get him to that “normal” outlook. To me, there’s a certain type of suffering associated with “fixing” your kid. I don’t subscribe to that at all. He’s not broken; he’s just him, and I refuse to waste what little emotional energy I have on that concept of “fixing.”
I want him, just like I want his brother and sister, to be the best HIM he can possibly be (if that makes any sense at all).
So, despite those fleeting moments, what I realize more and more is that disability or impairments (or whatever you want to call them) are an integral part of who my son is. Take those away and he’s a completely different kid. It would be like taking away his smile, laugh, stubbornness, mischievousness, or any other central component to who he is. There’s no value whatsoever in thinking about what he would be like if he were neurotypical because that would be a completely different child.
"Normal" is a strange word. In my mind, my son is totally normal. It’s normal for us to feed him in a high chair, it’s normal for us to change him. All those things are things we just take for granted. And to be honest, I don’t care about anyone else’s definition of normal, because the only one that counts is ours.
So in short, there’s no value to me in considering an alternate reality that doesn’t include disability. Because that alternate reality is one that doesn’t include my son. And that’s not a reality I want to be a part of.
Adapting to and accepting your child’s disability and the changes it brings takes time. Learn more about it on this website.
We have all found ourselves, at one point or another, comparing our child or our situation to another. The grass is always greener and you want what you can’t have—all phrases we have heard. Sometimes we must remind ourselves that we are all doing the best we can and we need to support one another and focus on the similarities, not the differences.
With every passing year in the world of being a parent of a child with special health care needs, you have the day to day struggles, the fun holidays, and some surprises. Good and bad.