A few months ago, I was out with Grayson and engaged in a conversation with some women about a baby in one of their families who was being evaluated for a medical condition. The end result is although treatment is needed, the baby is going to be fine and should lead a normal, healthy life. What struck me, especially since my son was with me, was how she expressed obvious relief that the baby doesn’t have any cognitive impairments.
I spoke up.
And even if she did, she would still be just as valuable, and her life would be just as important.
The woman agreed, but in sort of a dismissive way.
Those few minutes have really stuck with me, even weeks and weeks later.
I get it. No one wants their child or grandchild to have any disabilities, and I suspect, from the outside, cognitive impairment must seem like the most daunting. People whose brains aren’t typical, who can’t learn, communicate or process information like most, are often pitied. We say that every life matters, that everyone is equally valuable, but do we mean it? Is my son and what he brings to this world as valuable as a gifted child, who may grow up to be a world class scientist, or president?
I think so, but I don’t think most people do.
Grayson is six years old. He’s still relatively little and cute. We get mostly smiles and encouragement from strangers. I get accolades for being his mom.
But what happens when he’s 16, or if he lives to 26? I doubt many will find his drooling, spastic arm movements and noises as acceptable as they do now, and surely he won’t be as “cute”. He still won’t be able to read, talk, or do even the simplest of tasks for himself. Will people see his life be as valuable then? Will they see the healthcare costs required to keep him alive as worth it?
I hope so, because he will still be Grayson. And he is valuable because he is a person. Period.
Grayson has speech therapy twice a week. For months, he has been working on hitting a button to activate a toy. Our hope is that some day he will be able to use some sort of communication device, but he’ll have to have some eye hand coordination for that. As you can see in the video, he is working SO hard, but his brain and his eyes and his hands just don’t quite talk to each other correctly. But he’s getting there, and it’s an incredible thing to watch.
A part of me feels sorry for the woman in my conversation because in some ways, she is the one missing out. Sure, having a neurotypical child is absolutely wonderful. I adore watching Charlotte and Nolan learn new skills and I do marvel at their intelligence. But there is something so magical about watching a child who struggles to do the most basic of skills work on those skills and finally achieve one. Grayson works so hard, but he also knows how loved he is, just because he’s Grayson. If he never hits that button ever again, he will be just as valuable, just as loved, and just as accepted.