Neuroinsanity

Sometimes I wish I could kiss the top of his head, like I do a lot with all of the boys, and his brain would magically work like it’s supposed to. Not misfire neurons and send his body into uncontrollable tremors. Not break at the moment he needs to use his right hand, or walk down the hall. Not be completely contrary to all the Things He Wants to Do. He’s only 14, you know? Almost 15! He should be driving soon, and he won’t ever. He should be dreaming of all the adventures he could take, and instead he’s worried about how they’ll get the leads unglued from his hair next week.

I know we all want normal for our kids. Maybe better than normal. But when your kid has been sick for 2/3 of his life, you crave it in a way you never knew was possible.

I just love him so much. I worry so much that one day it will be too much for him. That he won’t believe it’s worth it to keep going. So many people with epilepsy do. The first time I read about how much higher mortality epilepsy patients have, it broke my heart. So I try not to think about it, because my heart breaks enough already.

It’s just a rough patch, I know. They pass. They always do. But I still fear that there will come a day they won’t. That he won’t wake up. That I will lose him.

And it fucking wrecks me.