Ok, I know it doesn’t show up well on this photo, but if you look over Aidan’s left eye he has a bruised goose-egg. This is what Epilepsy looks like to us now. Aidan continues to have several to many (who’s counting?) myoclonic seizures (remember that kind?) each day. They’re quick and he doesn’t have any postictal effects. The seizures in and of themselves are not such a big deal. What is a big deal is the chance that he could throw himself just a little bit off balance and fall out of his chair and onto the floor, like he did on this particular day. It happened at school and, while he was basically fine, any kid that has a head injury has to be sent home to be more closely observed. I get that. While we still consider Aidan an independent sitter, gone are the days we can wander too far out of reach. Ok, we still do that and just risk a face plant. What’s life without a few risks, right?
But wait, you say, I thought you said Aidan has an undiagnosed developmental disability. I even wore blue last year on your totally made up Undiagnosed Children’s Day. So where did this Epilepsy stuff come from?
Great question and thanks for asking. I would still say Aidan has an undiagnosed developmental disability. He’s a complex kid. Aidan doesn’t speak, though he understands and has some limited communication. He doesn’t walk on his own, though he walks great with assistance and is getting stronger all the time. Aidan processes information slowly, though he did a great job with the complicated task of learning to drive. He also has seizures. It’s one piece of the puzzle. As I’ve wandered into Epilepsy World, I’ve learned that it’s a complicated diagnosis which affects people in many different ways.
So, wash your blue clothes because we’ll definitely be celebrating the totally made up Undiagnosed Children’s Day in April as well. And get your purple duds ready for March 26th as we raise awareness for the 50 million people worldwide who have Epilepsy.
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