It never ceases to astonish me that people, even knowing Trevor literally had half of his brain removed, cannot wrap their minds around the idea that there is not a single part of his being which has not been affected by both this surgery and the saturating seizures he suffered before.
Let me repeat, there is NOT a single part of his being that was left unaffected by his disability and the treatments we’ve been forced to pursue for his sake and quality of life.
NOT a single part.
These thoughts have been brewing in my heart as I’ve observed people working (formally and informally) with Trevor attribute a variety of his challenges to behavior or lack of “listening” or silliness or defiance. When in fact, it’s more often than not linked to a very physical (though unseeable) limitation which has nothing whatsoever to do with behavior. And even his behavior (which is challenging) is linked directly to his disability. Because I am saturated in Trevor and his mile high medical records, many of these things are very intuitive to me.
For instance, his vision deficit is often misinterpreted as being rude or thoughtless or defiant or even cognitive impairment. Rather than understanding that he quite literally didn’t see you or that other child or that item you’re demanding he bring to you or point to. The right side of the world does not exist to him. It’s called Right Neglect. It’s a real, tangible, physical disability. But it takes very special eyes and training to know/understand. We were at a playground the other day which was quite unsafe even for kids without disabilities. I climbed to the platform with Trevor and stopped him before he bullied his way to the slide. He didn’t even see the hole to his right. He has no right field vision. And he was thoroughly shocked and frightened (thank God he’s beginning to have a healthy fear of heights) when I took his right arm and waved it in the empty space while showing him that it was there. In my heart, I was thanking God I was with him and feeling burdened by the times I’m not. He needs us to incessantly teach him and hopefully one day it will stick and he’ll learn to scan. But I worry often that his teachers and other caregivers will miss these little subtleties and therefore miss how remarkably smart and charming and in need of protection he is.
His physical weakness is misinterpreted as lazy or defiant rather than being seen for what it is. His body is compromised and weak despite the healthy glow of his skin. Of course he can’t write for long periods of time. He can barely hold a sippy cup for more than five minutes in a row. So great is his body weakness. But to the untrained eyes he seems “just fine”. They watch him run but miss that it’s not for very long. They watch him climb but don’t see that his arms quickly start shaking with the effort. They see his energy but miss that it comes in spurts. They mistake his fatigue as loss of interest. I know that in his heart he wants…craves…to play tag for more than a few minutes at a time. But his body prevents him. Because his body is deeply affected. It makes me want to scream and pull my hair out and punch someone in the face when they just don’t see that he’s physically compromised. I want to whip out his MRI (which both Jonathan and I keep in our wallets) and smash it in their face and ask them how they could possibly think that his body could survive uncompromised when this was done to him. Some things will never be healed. Some neurons will never transfer. We were Created with two hemispheres in our head for a reason. And even though neuro plasticity is a miracle – it is not a cure. Trevor’s body is scarred in more ways than the line parting his hair on the crown of his head.
His inability to produce the right words is quite often thought to be direct defiance of a request or just being silly or cognitive impairment. My God…if I had a quarter for every time he’s been accused of being silly when in fact he’s being…well…disabled! Word finding is not his forte. He’s missing the side of his brain that produces speech, you know. He can’t always find the words and if he does, often he can’t make them come quickly. He’s not being silly when he says the opposite of what he means. He’s speaking in broken miracles. He’s not being defiant when he doesn’t answer you immediately. He’s searching for the right words to say and trying to remember how to make his mouth say them. His lack of or wrong response isn’t a snapshot of his intelligence. A speech therapist once told me, “You know he’ll never speak like his peers, right?” At the time I hated her. HATED her. In retrospect, I know she was trying to prepare my heart to find acceptance somewhere a long the way. I do think limiting him is dangerous too. But dismissing his challenges is far more offensive (to me). Because when you dismiss his brokenness…you miss his miracle. And Lord knows…he may never be able to tell you with his own words.
Thinking I was probably exaggerating when I claimed that not a single piece of his being was left unmarked, I tried to think of something…anything…that isn’t marked as a result of his disability.
His skin is scarred from flashing scalpels opening parts of our body that were never meant to be open.
His eyes are missing large fields of vision because the portion of his brain was removed that controlled that function.
His ears hear quite well but have trouble distinguishing the words being said. Especially, when coming at him rapid fire.
His mouth struggles to form words properly and finding them is even more difficult.
His core is weak. Mushy. This makes him easy to push over (literally) and struggle to balance or even hold a pencil. It limits his participation in sports. And requires him to use a wheelchair for outings that will involve long walks.
His fingers. Sweet when they sign I love you. Get shaky when we ask them to work hard. They drop things often.
His arms can squeeze. But only for so long. And the right side is noticeably less mighty than the left.
His legs. So cute when their tanned from a summer in the pool. Cannot carry him long distances before fatiguing. Righty loses strength first and begins to drag just a bit. Enough to make him slow down and sometimes stumble.
His toes. Did you know he doesn’t know how to make them wiggle? He understands what we’re asking of him…but he just can’t get his brain to send the right signals.
This really only scratches the surface. There are so many things that I know intuitively. That I’d never think to tell you because I just know.
I suppose the point I’m trying to make is this…
every part of Trevor’s being has been affected by his hemispherectomy and epilepsy.
I can only educate so much.
And I do try.
It’s just that it’s so exhausting.
And often I feel like the person(s) on the other end of the conversation feels as though I’m excuse making or enabling. I can see the judgments and assumptions dancing on their faces. In their eyes. In the tone of their voice as they try to “just help” me be a better parent. Those are the moments I want to become a hermit. Live in isolation and peace. Because they do not understand just how complex his diagnosis is. Because you can’t see his vision loss or his brain trying to find the right words. And it is much more peaceful leaving ignorance be. It requires energy to try and educate. I know there are many parents who relate to this as well. It’s just astonishing to me that knowing Trevor is missing a large portion of his brain isn’t enough to help bridge the understanding gap. How much harder it must be for parents who don’t have an MRI visual to flash.