So your child has Epilepsy....

So does mine.  For nine years we have lived with this, this what?  It’s not really an illness, not really a disability, not really a medical condition so the world tell me.  It’s something though, and you need to live the life to know what it truly means to have a child with Epilepsy.

We live the life and it is a good life.  After a great deal of angst and argument we chose to stop living with stress and fear.  We changed the school to one that treats our daughter as an individual to be educated and not a problem to solve.  We found activities that she likes and not ones we thought were nice and safe.  I stopped worrying about “what if something happened?”  It probably will, so be prepared, not scared.  A happy child=happy parents.  It can be an easy equation to solve if you let it.

I am constantly given looks of incredulity when I mention my daughter’s swimming, ceramic work and occasional horse riding.  God help me!  She even walks 80 metres from the bus stop to home.  Yes it is risky but every risk is cloaked in a safety net.  We know every on in the street.  They will ring if they are worried.  She swims and rides with people who are familiar with her medical situation.  She rides a bomb proof horse.  We take risks but we are not stupid.  No amount of pleading would result in a bungy trampoline jump.  We could wrap her up in cotton wool but we’re not going to live to 150.  One day she will have to go it along, hopefully with a loving family of her own.  That’s what she wants so that’s what we want.

I have met people who have done “everything right” by their children, yet these children have contracted leukemia, been killed in car accidents and had limbs amputated.  Trite but true, life does get in the way of plans we make.  I didn’t want epilepsy in my life and there isn’t a day that passes where I don’t  wish there were a cure or something I could have done to prevent this happening.  But there isn’t so I have let go and moved onwards.  Epilepsy is not going to wreck the life my family has.  We go on holidays, we do sport, and we catch up with friends.  Just like everyone else.  It used to dominate, but now we accommodate and it’s a really  good way to be.