You say you don’t want a cure. Well I do.
I get why you don’t… this is a part of your child, an imperfect piece perfectly imbedded, merged, marinated, simmered and fused within every nuance of your child. You can not separate autism, or epilepsy, or down syndrome, or whatever it is from your child without removing what makes him… him. I completely respect that. I get it. But will you get me?
I want a cure.
I want a cure for J’s epilepsy that claimed half his brain, leaving him with only his right hemisphere to take the load of his development.
I want him to be without his sensory processing disorder that makes events that he would otherwise love impossible for him to attend.
I want him to function without his cerebral palsy that refuses to allow him the dignity and independence of buttoning his own jeans.
I want a cure for J’s autism that keeps him from connecting the way he so desperately wants with his peers.
I’ve yearned to write this post for some time. Tonight made it happen.
Tonight he took a break from his iPad reward for a good day at school. Having decided to accommodate my pleas for him to grab a fresh breath of air, move his limbs, interact with kids, he reluctantly ventured outside to negotiate relationships.
J is 9. He looks like a 11 year old. He emotionally is / feels like a 4 year old. He thirsts to connect with peers… though I’m not certain what ‘age’ his peers really are. To him, younger kids are less… dangerous. They’re more likely to join in his games without sideways glances of disapproval and, quite frankly, looks of repulsiveness and rejection that older children can give.
One of the friends he wants so badly to interact with belongs to that ‘younger’ class. As much as he tries, for as much as we’ve attempted to teach appropriate interactions with her, his attempts to engage her with his favorite pastime play of “Roar” and “run from the dinosaur / monster” is met with shrieks of fear and a panicked run for the safety of her home. Tonight was no different with the exception of the added concern of fleeing while safely wheeling her stroller of babies in an effort to free them from their proposed captor.
She did nothing wrong. She has a large child, 3xs her size roaring at her. It’s altogether unpredictable. Fear may be the only appropriate reaction.
He knew what happened. He tried to make it right; to share care and concern for this so badly needed / sought after relationship and for her “babies”. But damage is done for this evening… as it has been in the past… as it has been since the day their interactions began. He knew this effort was a failure and returned his attentions to the security and predictability of his own home… he returns to his iPad.
And that was enough for me.
It was at this moment, during this interaction that it hit me and I finally allowed the flood of acceptance in my feeling that I’ve tried to deny for so long; I want so much to be different for him. I want him to be able to manage the relationships he so desperately desires. I want him to make the friendships he seeks. To play like every other child. To learn new games, climb a tree, have a fair shake at learning what is needed to make it in life independently. I want him to be able to dress himself, bathe himself, make his own meal, get a job, to hang out with a best friend (without supervision)… one day.
I want his relationships with his siblings to be free from the constant “lambs ear” of resentment, teasing, arguing, hitting and more. Their relationships likely are damaged, my denial hopes beyond repair. The nibbles of reality tell me something needs to change – fast. The normal course of sibling issues are welcome; what he partakes in is beyond “normal”. That’s not fair for him… or them.
Most of this is never going to happen.
Just as you love your child, I love my J. My J *is* special. He touches others. He teaches. He reshapes your perceptions; perceptions of the world, of what’s big and small, what’s important. He refreshes your curiosity of all things we now take for granted. He reinforces what is good in this quickly sinking world.
Many days – most day, I see him as an angel sent to our earth to touch someone who, influences another, who then changes what choices they make in their life. I see him as a teacher, a guide, a leader of our lives. I see his shine, the aura, the inspiration for more than I will ever know.
But, while I’m proud of his spirit for making the sacrifice he has, I am sad that the sacrifice was made. Because I would like him to be able to connect with that little girl who cries, terrified, running from him in sheer horror for the big boy that comes at her roaring.
Because I would like his siblings to feel the love I know he has for them. To have conversations, arguments, secrets, and laughter that lasts longer than the few seconds before someone gets hurt… or that is followed by an on-slot of teasing.
Because I would like him to have every opportunity any child has, all the potential any child has; to be able to make independent choices and navigate his own destiny.
So while I will never subject him to faulty claims of magical healing – that’s not the type of ‘cure’ I desire – I do wish to help him always be the best he can be; and yet, this sadly doesn’t feel as though it will be enough…as for us, for J, for me, it just feels that the cards are stacked against him.
And he will never know these things.
And many other children will never know these things.
Without a cure…
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