Tuesday, October 8, 2013

A word I never say

Epilepsy is a word I once could never say.  When Jordan had her first seizure, I said she has a seizure disorder.  As time went on I always explained her condition as an unexplained seizure disorder.  When she relapsed this year and her doctor said she had epilepsy I told him he was wrong.  I was afraid of what that word meant and the stigma behind it.  I did not want Jordan labeled with that scary word.  I put my own fears and anxiety onto her because of this one word.

Then this weekend we went to an art opening called The Hidden Truth: the Mind Unraveled.  Devon submitted an art piece to this exhibit and his piece got accepted.

Those are Devon's hands, he does intricate pen and ink drawings.  This piece sold before the exhibit even opened and we are so proud of him.

Now I have a whole new outlook on things and it was nice to meet other people who have epilepsy. Now I can say Jordan has secondary epilepsy, which means she has seizures and they don’t know why. I was amazed by all the people we met who have had epilepsy their whole lives or who had their first seizure a year ago. There were people from around the world. We talked with a gentleman from the UK who has had seizures his whole life, he told us a story of almost having a plane emergency land because he was having a seizure. He was an amazing person who has traveled the world and does not let epilepsy control his life. There was a mother of two boys who is still trying to find the right medications to control her seizures and the artist from Massachusetts who had her first seizure at the age of 38.

Jordan had a great experience being at this event.  She came alive talking with other people who have epilepsy, they understood her.  One said "I never remember having a seizure" and another said "the medications suck".  She related to these people and I feel so much better about her condition.  I have always said she can do anything and now I truly believe it.

Jordan getting sick has always been a double edge sword.  It sucks, I hate it and sometimes I wish it never happened.  Then I think about Saturday night and realize we would never of had that experience if she didn't sick.  We would never meet all the amazing, wonderful people we have met along the way.  It has changed my family in way that is for the best and I love the life I live.