The roller coaster

2 Nov

I was actually in bed by 11 last night, which is early for me.  But I was totally drained, having spent half the day in tears.  It was a truly awful day, fighting with Jade to make her eat and take her medications.  You’d think that a girl who says she’s hungry wouldn’t be so picky.  And she never was this stubborn before, making me wonder if it’s the Keppra (her newest drug, one of the side effects of which is behavioural problems).  Not even a week into the diet and I was wondering how we were going to survive.

Fortunately, other than a really nasty drop seizure (read all about it on Michael’s blog) today went much better.  Fewer seizures than yesterday, better cooperation with eating, more happy, chatty, normal time with Jade.  Her “meals” were actually more liquid (we gave her KetoCal formula) but since she’s not drinking enough these days, anyway, that’s not a bad thing.  I did nearly break down completely when she begged us for banana and then bread, but then she snapped out of it about 15 minutes later, distracted by some shiny stickers our friend Janet left here, and wasn’t even hungry.  I’ll have to keep this in mind next time she has a breakdown over something she can’t have.

I was reading an epilepsy support website yesterday that suggested that one of the worst things about epilepsy, for parents, is the fear.  The actual amount of time Jade spends having seizures is miniscule compared to the amount of time I spent fearing when the next seizure will come.  It’s true that sometimes the results are heart-breaking (the scabbed lips and nose, the dented forehead…) and that there is a real danger for her.  It’s also true that I can’t possibly catch her every time.  Even before I read this thought, I already recognized that it scares me when Jade climbs up onto a chair or play structure or a bed or, well, anything, and I struggle with trying to balance letting her be a kid with normal bumps and bruises, and trying to protect her from her condition.

Somehow, though, recognizing the huge imbalance of time spent seizuring vs time spent worrying about seizuring has been a very powerful thought for me.  While Jade continues to have these awful drop seizures, there’s no way for me to completely forget the fear.  I still have to do my best to protect her.  But maybe this thought will help me be more optimistic and less fearful when we really start to see more improvements.

Lessons learned today:

  • a good night’s sleep goes a long way to creating emotional stability for mommy
  • meltdowns over desired foods don’t last forever and seem to be quickly forgotten
  • fear may not be the only thing to fear, but it still needs to be put in its place

Please God, let us keeping having days that are better than our yesterdays.

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One Response to “The roller coaster”

  1. Mr Lady November 3, 2008 at 12:03 am #

    That’s a prayer worth passing on. I’ll make one, too. 🙂

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