In my attempts to deal with The Boy’s epilepsy I think I go too far. So desperate am I to ‘get it right’ that I spend hours on line seeking answers to questions I have never even thought about let alone ask.
I have become rather zealous and indeed some might say I even proselytise a bit like a Baptist preacher on unsuspecting passers-by. I don’t mean to scare people I just want to share. I want people to understand and not think my son is any different to them. But that is not going to happen really is it? Because face it, he is different.
So most of the time I frighten people away, much to the embarrassment of The Boy who hunches his shoulders, digs his hands further into his pockets and says things like: “Muuuum!” while focussing his eyes on the floor; in fact anywhere but at me.
Now, while writing about epilepsy on the blog, I got the opportunity to get involved with World Epilepsy Day on March 26th 2011. A great project that raises the awareness of epilepsy around the world though a host of volunteer led events and of course the wearing of the colour purple.
I put The Boy up to volunteer as an Epilepsy Ambassador and he got picked but now I think I may have pushed it a little too much as The Boy is becoming too well known for his illness at school and not for himself. And I fear he is becoming even more isolated.
I mean it is bad enough that he’s not playing Rugby with the other boys in his class, (although he has whispered to me that he is relieved as the showers which the boys have to take after playing Rugby are more than frequently cold) and now I come along and force him to stand up in front of the whole school to talk about it and his Epilepsy. He is very happy to do it but I am getting cold feet worried about what the children will think, worried about how they will treat him afterwards. Will he be “The Boy with Epilepsy” for the rest of his school career? Am I in fact in danger of turning him into a hypochondriac? Someone who defines himself through his illnessess?
Should I hold hard and wait a year? Should I do it at all? Am I doing it for the right reasons? So many questions and I have no clear idea of the answer…