Born blue as those sassy wee Smurfs, and contracting Meningitis before his second birthday, Scott was a ticking time bomb of hospital appointments and nights spent crying. Epilepsy was the main culprit for Scott's grief, and we'd be seeing a lot of it in the years to come.
Imagine the mentally-ingrained plans you make for your first child, then forget them all, lock them away and pretend they didn't happen. That's what my parents had to do. Years of waiting for Scott to catch his breath and come back to us, years of nearly 40 seizures a day, years of waiting rooms, drug trials, scoliosis, specially fitted helmets, ignorance and childhood bliss. Can you imagine the toll that would take? Neither can I, but my little brother and I were there to see it all unfold.
My parents didn't ask for a child unawares of his own body, a child unawares of synapses shooting and limbs seizing, a child unawares of how to spell his own name and with the mental ability of a three year old. But that's not all they got, mind you, they got a boy that could ride a bike, a compassionate young kid with a protective nature not dissimilar to his dad's and a delicate one like his mum's, a boy that could wind his siblings up something silly and a boy that would love his family as much as they loved him. And us? We got parents that continually fight for him.
The governmental services set to protect Scott have often let him down and picked him back up again over these last two decades. From time spent in a primary school that left him lumbered on a bean-bag like some throwaway toy, to time spent in a home where college, some serious cake making and life skills brought him back to the kind of person my family had always hoped he'd be. It's been a hard ol' slog, but one we wouldn't change for the world. Scott's condition is ever fragile and incredibly demanding, and he has good and bad days like anyone affected by Epilepsy, but it's certainly not who he is.
I've always wanted to write about Scott. I've always wanted to have something down that would remind me of how much ours he is, how far we've come with him and how far he's come himself, how much we love him, and who he is as a person. And while I won't indulge the drugs that worked and the ones that didn't, his photo or his daily routine, it's still something to hold, right?
Scott hasn't gone anywhere, and I doubt the stubborn little sucker wants to any time soon, so please don't see this as a eulogy or anything of the sort, see it as a round of applause for the champion of the funky chicken. And my parents, always them.
In the UK, 600,000 or one in every 103 people has epilepsy.
Epilepsy affects education, it affects social interaction, it affects life. Let's support the people that give life back to those with epilepsy: https://www.epilepsy.org.uk
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