Cheater’s update: e-mail to Sue

29 May

Hi Sue,
 
Wow, I had no idea you ever came to visit!  Thank you SOOO much for your message — it really is strangely comforting to know that someone has gone through what Jade is going through now (and that his parents went through what we’re going through now!)  Michael was astonished to learn that Garrett had seizures as a child — he’d had no idea.
 
Although in many ways there’s nothing much different today from a few days ago, our energy and optimism is flagging somewhat — just the result of a long week, I guess, and of waiting around for the next step when all we want to see is action.  Jade will be in the hospital until they’re confident that the dose of anti-seizure meds will keep her seizure-free.  Meanwhile we’re waiting to find out what kind of time-frame we’re looking at for the EEG and pediatric neurologist in Vancouver or Edmonton.  I just wish there were doors I could go knock on to hurry things up.  My boss’s wife is a retired nurse, and she’s been trying to help by giving us tips on how to keep the pressure on; it helps to think there might be some small things we can do.
 
Jade’s daycare worker came by for a visit this evening with her daughter and a gift: a little plush dog that barks.  I teared up when I saw her; it was so touching to know how much she cares about Jade.  As soon as Jade saw Cheryl, she made a beeline for her, hopped up into her lap and hugged her without moving for at least five minutes.  Cheryl was trying to show her the puppy and she didn’t react at all — I’ve never seen her not react to a puppy, real or otherwise — but she was just too busy hugging Cheryl.  Cheryl also offered to come spend a few hours with Jade on the weekend to give us a break; how unbelievably sweet is that?

I would love to hear more about your experiences… how long it took for them to make the “epileptic tendencies” diagnosis (which sounds pretty vague to me, but seems to be the way these things go, isn’t it?!) and other things that stand out in your mind about that time.  I’m thinking we should e-mail Garrett, too, and see what he remembers about his seizures.  I wonder if Jade knows at all what’s going on?  Does she remember anything afterward?  Do her muscles get sore?  (Her spasms aren’t violent, so they don’t seem painful, but they do make her very tired.)  I wonder if Jade’s seizures will last for as many years.  If they do, I wonder if she’ll be sympathized with or made fun of at school.  That’s so far down the road, but it’s already on my mind.  And of course there’s that ridiculous and useless and completely persistent question: what the heck did I do wrong?  (I know the answer to that, but it lingers like a bad song in my head.)

Sorry, I’m afraid I’m rambling now… I’m just so grateful to you for writing and letting us know you’ve been there.  And to know everything turned out just fine for Garrett.  Even though it’s what we hear, knowing it and seeing the proof is so comforting.
 
Thanks again for your comment — it truly made our day!
 
Gratefully,
Fawn

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