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March 27, 2011

Everything changes.

I have been burning the candle and both ends and in the middle lately, frantically trying to complete some contracts before their due dates. Yesterday afternoon, however, I closed the ol' laptop to take in some much needed family time.

We went to the hotsprings where, with the assistance of her floaty suit and a little bit of encouragement, Jade discovered that she could make her way around the pool on her own steam. Her smile was huge as she pedaled with her feet all around the pool.

It hasn't been easy getting Jade to feel more comfortable and confident in the water. Normally, she clings to me and freaks out if I try to get her to swim on her own. You see, it wasn't that long ago that swimming was a very risky activity for us.

Jade used to have atonic, myoclonic, and absence seizures. One moment, she could be swimming along happily, and the next, she'd have a seizure and be face-down in the water. Unnerving. And Dangerous.

Now her seizures are under control and we've been able to let go of a little bit of that fear. In fact, the hotsprings were downright fun. It was wonderful to see her regaining that confidence - one little paddle on the way towards learning how to swim.

Really, there are a lot of things that we've started taking for granted again. We can let her play on the playground equipment without having to hold her around the middle in case she has a seizure. We know that she's able to learn and develop without constantly being interrupted by seizures. We can sleep at night without worrying about her having seizures. Oh, we still get woken up at all hours, but seizures aren't the reason.

We're lucky.  This summer she'll be on her bike and, hopefully, she'll learn how to ride without training wheels. That would have been nearly inconceivable just over a year ago.

She is doing very, very well.

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I got a message from a friend the other night. He was up very late. His daughter had just been diagnosed with Generalized Absence Epilepsy. They're a very active family. Swimming, riding bikes, playing at the playground, and everything else they've known just became a lot more complicated and a lot more dangerous. Nothing is normal anymore.

I'm sad for them because I understand what they're going through. If they can't get her seizures under control, their lives will dramatically change.

I also know how much epilepsy can steal from a family. (Please read that last link.)

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Epilepsy is more common than autism, multiple sclerosis and Parkinson's disease combined. You know a lot more people with epilepsy than you realize.  What you may not know is how it has affected their lives.

March is Epilepsy Awareness Month in Canada and I'd like to ask a favour of you.  If you know someone with epilepsy, ask them about it.  Ask them how it has affected their life.

If you don't know someone with epilepsy (and trust me, with more than 1 in every 100 people having some type of seizure disorder, you do), visit epilepsy.com or wikipedia and learn a little more about seizure disorders.  Then, share it on facebook, twitter, your blog, or wherever. 

Please, post in the comments section what you've learned.

It's time we started paying more attention to epilepsy - and finding ways to put an end to seizure disorders.


2 comments:

Sarah said...

I've learned how serious and life-altering it can be. It used to be that I thought epilepsy was a scary diagnosis after one or two scary seizures and then you take medicine and they never happen again.
You guys have shown how it truly makes you drop everything and re-evaluate EVERYTHING about your day-to-day life, especially now tat you're negotiating the fine balance of how to not have them return so seriously. You guys are warriors.

Scientific Chick said...

Michael,

The entire month of March I have been on the lookout for a good paper on epilepsy. I'm sorry to report that I didn't find any new exciting finding, but progress is being made. The brain is such a friggin complicated thing. I recently found out that a few people I sing with also suffer from this disease. It brings it close to home and I have definitely learned that it is way more prevalent than I thought. Thanks for keeping us posted, and I am so excited to hear about Jade swimming!