October 20, 2008

My child has a disability.

Jade and I seized the day and went out to enjoy a fresh batch of snow. After making a snowman (which she and Nanuq subsequently destroyed) we went for a walk.

There were few footprints in the snow, so I decided to take the opportunity to teach Jade about tracks and tracking. I told her follow my footprints and then I ran off to hide in the trees.

Looking down at the tracks, she followed my wandering trail. I watched her as she approached, both of us enjoying the game.  Suddenly she stopped, and I could see that a seizure had started. It was one of those absence seizures where her head droops and bobs a little. Sometimes, when she has these ones, she can still do other things, but they're done in slow motion.

Through her head-bobbing seizure, she turned and gazed vacantly in my direction. Slowly, through the seizure, a pleased little smile appeared on her face. She had found me.

Then her seizure ended.  She just stood there, unsure of what to do next.  I could see that she had forgotten what she was doing, forgotten that she had found me.  She started wandering away.

It was at that moment that I realised my child has a disability.

I have known for months that her language abilities haven't been progressing the way that they should. More recently, she's been losing her balance and is having a hard time walking in a straight line. It must be so difficult for her to learn - and it's obvious that she loves to learn - when the seizures keep getting in her way.

Well, if people like Rick Hansen, Christopher Reeve and Ramesh Ferris can overcome their challenges and achieve great things, why shouldn't my daughter?  So what if she has to work a little harder?  

The things we appreciate most are the things that we earn.


Anonymous said...

Add Helen Keller, Stevie Wonder and a few others...... Love Gabe

Anonymous said...

I don't always read your posts about Jade anymore because I always get wet eyes. There are no words that can help, but those of you who have never experienced a child getting this sick should thank someone, because it takes you down a path that is traumatic in the extreme. As parents we subconsciously think that we should be able to prevent such things, but life just doesn't work that way. My heart goes out to you and Fawn, Michael.

Anonymous said...

I'm like Murray above here - I sometimes skip your posts about Jade, because I get so sad for all of you.
I will say one thing though - Fawn and you have my utter admiration for being such level headed parents, tackling this whole situation with such grace.
I'm not sure I would have been able to do the same...