October 19, 2008

Finding strength.

Surgeon General's Warning:  Reading this post may cause you to lose any warm, fuzzy feelings that you may be experiencing.  Severe loss of cheerfulness may result.  Do not operate heavy machinery while reading.  If you experience constipation, it probably doesn't have anything to do with this post.

When I did the Yukon Adventure Challenge a couple of years ago, there were times when I wanted to quit. I was having stomach troubles and frequently communed with the bushes. In the wee hours of the morning, I wanted desperately to sleep. The whole team was tired.  On top of that, one of our teammates had sprained her foot badly.

There was one point, at about 6 am, 24-hours into the race, when we had the opportunity to quit.  We were near a road.  There was even a vehicle there, waiting to take us home to our comfortable, warm beds.

I found out later that every person on the team was ready to pack it in, but nobody was willing to say it. Because nobody was willing to be the first to admit defeat, we pushed on. 

Later that day, when we reached a point in the route that I knew, I found new reserves of strength that I couldn't have imagined were within me just six hours earlier.  I could see that the end was in sight. I was rejuvenated.  

In spite of another team member cutting his leg and having an infection rapidly set in (he was in and out of the hospital for over a month because of it), we finished the race. We were the fourth and last four-person team to cross the finish line (just a few minutes behind the third-place team). We didn't win, but we did better than the other half of the four-person teams that never finished the race.

Even if it was borne of an unwillingness to voice defeat to each other, I was proud of our accomplishment.  Somehow, we all found the strength within ourselves to go on.

With Jade's epilepsy, Fawn and I have been challenged to a point where my memories of the Yukon Adventure Challenge are starting to seem more like a pleasure tour than the physically exhausting event that it was.

Fawn and I are tired in every possible way. Jade's seizures keep getting worse. We keep having to use her emergency medications - which get less effective the more they're used. Most of the day, Jade stumbles around in a drunken stupor. I don't know if it's the drugs or the epilepsy. Seizure after seizure, I get more and more fed-up of documenting them all in her seizure log. It's too hard to keep track. There are just too many.  They happen day and night.

I suppose I could imagine that I'm a wildlife biologist, examining and documenting the behaviour of a newly-discovered animal, but I'm in no mood for that kind of fun.

What's hardest, though, is not knowing if there is a finish line; a point where it will all be over and it will all work out.  Right now, it seems as if things can only get worse.  

What do we have to look forward to?

We  hope that the ketogenic diet will work for Jade, but the diet is at least a month away.  We're barely hanging on now and we've got a second child on the way; a child who will arrive before we can begin the diet.

And what happens if the diet doesn't work? What do we have to look forward to then?  I am not aware of any other options if the diet fails.  Watching my child deteriorate is the most horrible thing that I can imagine and I can see it happening right now, before my very eyes.

We will survive.  We have to, for Jade's sake.  Although Fawn and I are flagging, I know that we have untapped reserves of strength that we cannot imagine are within us and I'm glad, because we're going to need them.

In the meantime, I can't help but think that this "epilepsy adventure challenge" we're on totally sucks.


Anonymous said...

I wish there was something we could do to help you guys. Let me know if there is. We're are thinking about you all the time and praying they'll figure out what is causing these seizures and how to stop them. All our love.

Meandering Michael said...

Thanks, snotface.

Meandering Michael said...

Thanks, snotface.

Peter Tyrrell said...

Well, um, we're reading about it and feeling your pain. I hope the ketogenic diet works, too.

Nemmy said...

God, Michael, it's hard to write sympathetic comments when I can't see the keyboard for the tears... half from sorrow, half from giggles that I have to suppress because it's so awful and yet you have still kept your sense of humour so I can't help it.

I know it doesn't help, but I admire you and Fawn (always have) and hope that, if Mike and I ever face such a challenge, we rise even half as admirably to it.

Anything I can do, just let me know. xoxo

Anonymous said...

The ketogenic diet is excellent. Our daughter was having 100 + seizures/day and we were resorting to valium as a last result daily before beginning the diet. Now she can go days without a seizure and when she does have them they are extremely small. Other options in the pipeline are the vagus nerve stimulator, possible surgery. Please do keep the placenta from your soon to be newborn as stem cells are showing to be a viable option to treat epilepsy and other brain abnormalities. We are expecting in March also. Good luck to you all.
Kevin said...


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Maggie Danhakl • Assistant Marketing Manager

Healthline • The Power of Intelligent Health
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