Waiting for the other shoe….

I’m not in a good place right now.  I’m having a really hard time actually.  Things are going so well, too and I should be happy but I’m not.  This damn Prader-Willi just hovers over everything like a big, black cloud and I feel like I’m always waiting for the other shoe to drop.  I just feel like there’s no security in the the good times, I don’t want to get too attached to them.  What is good now isn’t going to last, it just can’t — it’s only a matter of when and how things will come crashing down. 

If you must know what set me off this time, which was my “one article too many” — here you go.  Of course, that’s only what set me off in the last hour.  Coming off of last night’s sleep study to monitor and/or detect respiratory problems didn’t help.  Grace is in day care a couple times a week, she’s already been sick twice, what if she brings something really bad home?  Hope is going to get the Synagis vaccine, but maybe that’s not enough, maybe I should pull Grace out of school.  Hope insists on sleeping on her stomach, I can roll her to her back but I have to sleep sometime too.  The first night Grace slept through the night Tammy and I freaked out, of course we slept through the night too.  When we woke up we ran to her pack ‘n’ play in the living room where we had put her after getting home from a birthday party the previous night.  We had figured she’d wake up to eat one more time, she didn’t.  When we got to the crib she was still crashed out, and she looked kind of gray…my heart sank.  But after a few nights, we got used to it…and now we love it.  That’s never going to happen with Hope, is it?

I remember after Grace was born that I would catch myself constantly scanning the environment, I have no idea for what.  I’d be at lunch with a friend and I’d realize that I must have looked like I was paying no attention to them at all because I was always looking around.  I do it with Hope too.  Even when driving I notice that I spend so much more time checking my mirrors (and trees for some reason), that I have to remind myself to watch the road sometimes.  I felt a sudden kinship with every mother profiled on Wild Kingdom, now I understood that primal, instinctive vigilance…and the protectiveness, oh the protectiveness.

I still scan, I still check the trees, little has changed in that regard except that now I notice other things too.  


Of course, I’ve always noticed food because it’s my hobby, or was.  Now it’s more like seeing someone you know in the grocery store when you look like runner-up in the trailer park beauty contest and all you can think is, “Dear God, please don’t let her see me.”

We had a guest preacher at church on Sunday that I have heard many good things about, we sat in the front row.  The sermon started and there was a big picture on the screen of a table set for dinner, with food…a nice, Mediterranean spread I think.  But I didn’t hear another word after that.  Hope started squirming, she didn’t want to sit, it was time for her morning nap and if she can’t go down in her bed she has to be walked and rocked.  So I carried her to the back of the sanctuary where I could hear and see the sermon happening, but all I could think about was that picture.  Would something like that bother Hope?  Will it provoke an outburst?  Will it be as distracting to her as to me?  What am I going to do with my ginormous cookbook collection?

I’ve gotten pretty active in my church over the last couple of years after a long, long time of wanting nothing to do with any church…a result of my evangelical upbringing and the big, gay chip on my shoulder.  Now we’re United Methodists, a denomination that could arguably replace its existing logo of a cross and flame with a cross emerging from a green-bean casserole.  We love a potluck…and a pancake breakfast?!  praise Jesus, pass the syrup.  My own involvement at church pretty much grew out of my love of food…I’m not joking either, it is no stretch to say that God has led me back to flock like Gretel…a potluck here, a restaurant fundraiser there, Tammy starts running the coffee/snack cart between services–I’ll bake for that, toss in a few pancake breakfasts and now I’m running the kitchen at the weekly community meal we host.  

But that’s not going to last, is it?  It can’t really. I can’t have a separate, second life where nothing has changed, and even if I could I wouldn’t want to.  

So I wait for the other shoe to drop, and in the meantime, read one article too many.

This entry was posted in Postcards from Holland, PWS and tagged , . Bookmark the permalink.

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