Thursday, 29 September 2011

Epilepsy rollercoaster ride

My sister’s son has epilepsy.  My first nephew, the crazy cute one who says wacky things, draws great pictures and has a style sense to rival Gok Wan. The boy who I pretended was my son before I had my own kids. Yep I really did that, people would stop and say how much he looked like me and I would just smile and nod, never admitting he wasn’t actually mine. Big Sis didn’t mind, she secretly liked it.
I didn’t know much about epilepsy and I still don’t know enough. He was diagnosed last year and every week he displays new symptoms, fights new battles, has more challenges to overcome.  And because we don’t live near, I only get to hear about it. My sister and her husband get to live it, day and night. They're on an epilepsy rollercoaster ride and they'll never be allowed to get off.
Epilepsy isn’t just about fits – or seizures to give them their proper name. He suffers from ‘drops’ which are temporary blackouts, causing him to trip, drop things on the floor, even fall in his own food. Not a good look when you’re surrounded by 5 year olds and your dinner is now all over your face. But he sits up, wipes his face clean and gets on with it. 
He also has long periods of being in a trance-like state. He doesn’t hear you call his name (ok most 5 yr olds don’t hear that!), but he doesn’t hear you offer him chocolate or a ride on his bike either. He wants to sit in the corner in silence and retreat into his own world. Big Sis tells me this is the hardest state to deal with. Her lively, never-sit-still child hides out in dark corners and stares blankly into space. Drifting from place to place, not hearing you, not really seeing you and not reacting to the world around him.
You have to carry on as normal. You could wrap him up in cotton wool but he’s 5 and the last thing he wants is to be different. So unless things are really bad, he gets dressed and goes to school. Often falling on the way, sometimes arriving and not really knowing he’s there. On these days my sister tells me she cries silent tears. You know the ones you cry when you’re trying to hold it together but the tears keep coming anyway? Sometimes the mums at the school gate share the pain, sometimes the teacher’s look says it all.
His epilepsy is evolving and they’re still trying to find the perfect combination of drugs to help manage his illness. Children in school are starting to notice and they’re old enough to be told what’s going on. If they understand what’s happening to him they’re less likely to make fun of him. Bullying is an extra stress he really doesn’t need.
But he’s an incredibly brave little boy and he keeps on smiling. He’s always been slightly eccentric and I think this eccentricity will get him through it. It hasn’t stopped his obsession with super heroes or taken away his daredevil spirit. It seems an odd thing to say, but epilepsy couldn’t have happened to a better kid – he’s so well-equipped to deal with it.
I can’t begin to imagine what my sister and her husband are going through. I hope this post helps more people to understand. But the best way we can help is to learn more about epilepsy, not be afraid of asking questions and most importantly, don’t treat him as if he’s different.
And next time you see a child who’s behaving a little bit strange, think twice before you judge him. Next time you see a parent who looks slightly on the edge, think twice before you judge them too. You just never know what’s going on in people’s lives.
Dedicated to my Big Sister, who is so much stronger than she realises and my Nephew, the next big thing.