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 27th. 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.
