Just Because He's A Person
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.
First off, so cool about your other post going viral! Just now catching up on blogs, haha, and I'm hardly on FB to truly keep up with all the new news. 🙂
Secondly, I think about this a lot too . . . What happens when Clara is 15 or 20, etc? She is cute now to outsiders, but will a teen, possibly still in diapers, totally nonverbal, who drools and who wanders and chews on everything still be as cute and adorable? I wonder about this very thing so often. Of course I still believe her life is just is valuable, but will society? It's tough.
And agreed, there is something so magical about watching a child who struggles achieve a skill they have been working on for months/years.
I hear you and agree with you.and honestly speaking,i have never seen a boy more beautiful than Grayson.you are such a great mum for taking such a great care of him. I think that lady was perhaps afraid of responsibilities toward a child with a special condition. Plus,perhaps she was afraid how the world will treat that child and what will happen later once the parents are not around. Obviously,i wasnt there to hear your conversation,but perhaps,out of fear she acted the way she did,without thinking that baby was less valuable. Warm regards from the UK.
Your story was posted on the nationwide Patch network of local online newspapers. After I read it Wednesday I posted a comment, in which I argued that as somebody with a relatively long memory (I am 61) I can very easily recall A Time Before Obamacare. Yesterday I read the following article about a child in the U.K. who has a condition very similar to Grayson's. The difference there is that his parents are being TOLD to let him die. The medical establishment in the U.K. and in the European Community as a whole is essentially saying no to the parents, that they can't take their baby to the U.S. for lifesaving treatment… even though they raised more than a million bucks themselves via a crowdfunding campaign.
As far as I can tell the people who are all up in arms about cuts to Obamacare haven't made a peep about this news from Britain. This is the esteemed European model of healthcare, the one that the Elizabeth Warrens and Bernie Sanderses of the country insist is BETTER than ours, kinder, gentler, and would take care of children such as Grayson Baker.
Well, apparently not. As yourself: Do we want to import that here? People made fun of the phrase “death squads” during the Obamacare debate 8 years ago, but that seems to describe well what is happening to this little baby.
I said in my earlier post that prior to the advent of Obamacare, children with grave conditions such as Grayson WERE being cared for. Yet, everyone insists that any attempt to modify a program that is a mere eight year olds is going to “kill people.” I for one am sick to death of hearing about the supposed superiority of the European healthcare system, because comes with some big catches. Forced euthanasia has been common practice in The Netherlands for several decades; now it appears to have caught on in the U.K. Maybe those societies want to engage in such practices, but that's one import I'd hope most Americans would oppose. And, unfortunately, people with difficult situations like yours end up getting fed into the swamp that is our system of national discourse.