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Underneath it all, JC Superstar is invading our lives. Last night: 45 minutes of semi-accompanied soundtrack playing. And the occasional air guitar.

Everything’s all right, yes everything’s alright.

you first bring a baby home from the hospital?

Is s/he still breathing? (You rush upstairs.)

Too hot/too cold? (You lay your finger on the back of the neck.)

Is that a chest infection? (You put your ear on his or her back.)

Tears of sadness or tears of pain? (You try a hug.)

Is this skin cancer? (No, it’s a freckle, said the doctor. This really happened with M!)

Etc.

*

The minute, close-examining-ness of it all. Each movement and thought seeming to affect the next, and those around it, laying chaos theory bare, and you are the only one who can see it. As if any moment, there could be the worst catastrophe you could ever imagine in your life until now.

*

Having a child with a chronic disease is a quite a bit like that. Like there’s always something just at the corner of your vision. You’re trying not to look at it, because it’s unlikely to be real. Unlikely to come true.

You just have to keep going. Like having a new baby. You have to realise that people do this every day. Every second of every day. You push away whatever wispy dark things that might make you stop in your tracks.

It’s okay.

Well, you know it really is, and you know it really isn’t. All at once, and all the time.

I just cannot resist. My muse Nancy sent this to me, and I have watched it — er, a lot — in the last 12 hours. I don’t care if it’s planned, choreographed, worked out. That it’s an advert. It’s still community art, and I love it.

Who hasn’t wanted to dance in a big open space like Liverpool Street Station? How perfect would that be?!

Check out this short film on the making of it too: you just have to, for the guy at the end who says something like ‘it was five minutes of love, man’… Just absolutely great.

Happy Monday.

Obama is inaugurated (twice!). I forced the children to sit, not so rapt it must be admitted, in front of the first actual ceremony. M later commented that it was kind of an amazing feeling to know that we had just witnessed history.

Thanks to wonderful Nancy, I am once again struck by just how charismatic our new 44th president is. I mean, can he dance, or what?! There is nothing, absolutely nothing, like a slow, circling dance with someone you either have been or are going to go to bed with. 

I’m sorry, I know we are talking about the President here. But this all just makes him real. Human, fallible. And equally — full of joy, laughter. And everything physical and complex. Someone, moreover, who knows this about himself, and about all of us. No cut-out cardboard. 

Hallelujah.

Not that I had any real doubt, but you know….

It’s possible, just possible, that somehow all the doctors got it wrong. Etc. I’m thinking this occasionally. I’m also thinking gee my sugar’s probably all over the place. I’m really thirsty. Have been for years. 

This is all alongside one of my very first reactions: give it to me. Make me have it, Lord. I’m ready. I can take it. I’ve had 44 good (mostly!) years. I’m happy. Give it to me. Don’t make him carry it.

Well, so. Yesterday morning E says hey wanna test your blood sugar? Sure, says M. Sure, say I.

He does all the mechanics, and a drop of bright blood expertly squeezes onto the monitor from M’s slim, long finger (I’m thinking, ack imagine having a two year old with this! Imagine. So many do. Their little fingers…)

M’s reading: 4.7 mmol

Me next. It hurts. E apologises.

My reading: 4.1 mmol

*

Let me put this into context, just in case. 

1) We’d be jumping for joy if E’s blood glucose level ever approached this regularly. Truth is, he’s been there half a dozen times over the entire last 8 weeks: and all of those times, he has felt ‘hypo’ — shaky, unwell.

 2) M and I had eaten less than an hour before the test. Which means our bodies were in full digestion mode. If E had tested then, his sugars would have been at least depressing and probably a little scary, probably 4 times (at least) our level. 4 times!

3) All of our calculations go into trying to get E into the ‘target range’ of 4-7 mmol upon waking (fasting level), and 10 mmol before a meal in the daytime. Our own levels, so low, so even, so perfect, are just the results of having this amazing, amazing ability to distribute insulin in just the right measure, at just the right time. Incredible.

*

What I learned.

1) M does not have diabetes.

2) I do not have diabetes.

3) E does and always will have diabetes.

4) He has to carry it.

5) I can’t.

 

I HAVE MOVED

From January 2010, my new blog is Waving and Drowning

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Who am I?


A writer born in Texas, who grew up in the Blue Ridge Mountains of Virginia (yes, like the song), and who's been living in the UK since 1988. I've published two books (see below), and teach creative writing at the University of Kent. I'm married to a composer, and we have two young children. See About for my full profile.