March On

 

March is epilepsy month. Yesterday was purple shirt day and I missed it. I like to show my support for something that has had a huge impact on my life and on the lives of those I love but, on a personal level, it’s not a bad thing to forget purple shirt day at all. I haven’t had to think of epilepsy and worry constantly every day for a few years now. Our guy is doing just fine.

He’s in high school and doing well. He has friends and interests, swims like a fish and has a fabulous sense of humour. No meds, no seizures. for several years now but our guy still tires easily and is a little shaky sometimes. He’s the grandchild I worry about the most – nothing specific – it’s just it was so awful for so long that it seems to be tempting fate to relax a little.

And there is still that black dog hanging around in the shadows – our guy’s health status could change at any time. We were warned that adolescent hormones could wreak havoc, sometimes in the worst ways. I pray it won’t. I can’t live in a world of “what ifs”. The only direction is onward in all directions.

Our guy had his first seizure 13 years ago on March 27^th. We’ve all come a long way since then. His grandpa isn’t quite as broken as he was 13 years ago when our guy collapsed on our living room floor and his grandpa and I thought he was going to die, the days of multiple daily seizures are far in the past, and although he was delayed at school for a long time, he has worked hard and made up for lost time.

I read a quote somewhere a long time ago – “The first thing a child with special needs learns in school is that he is flawed and that flaw is the most important thing about him”, so very true but what is inexcusable is that what is learned is very difficult to unlearn. There isn’t a whole lot our guy can’t do these days, but he doesn’t know that. He is reluctant to speak up and he doesn’t think he’s very smart. As he continues to grow, I hope he comes to realize what a unique, thoughtful and intelligent individual he really is.