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E is on a multi daily injection system: one long-lasting injection at night (to provide ‘background insulin’ for 20 hours), and three fast-acting insulin injections with meals (any other large ish snack would require another injection, but we haven’t gone there yet, a whole different story…).

So. We have just started ‘carb counting’, which means that we weigh all his food, calculate the carb content thereof, and try to match the amount of insulin he needs for that meal. This appeals to the scientist in all of us, I suspect, so we’ve been trucking along, eager to get control of the blood sugar levels. 

So last night for instance we’re rushed. Everyone is starving. We weigh the sausages, cabbage, carrots, roast potatoes. Think, a full meal. Think, lots of carb. Think, he’s been running high numbers all day. Say: take the maximum dose.

We enjoy our meal, and end up trying to turn modern hymns into rock songs. Don’t ask me why.

R wanders over to the carb counting papers for a casual look. Ah, he says, very little carb actually in that meal. And roast potatoes digest slowly. Ah.

Hmm. We realise we have quite possibly overdosed and mis-timed things, so E is very likely to have a ‘hypo’ in the next two hours (when the insulin peaks). (Many of you will know all about this, but I’m proceeding for the moment like I had to proceed at the beginning of all this.) This is when his blood sugar levels drop, sometimes quite dramatically. He feels this, fortunately, by going shaky, and has so far ‘caught’ all of them, eg taken quick acting sugar to pull his level up again. Without intervention, hypos are dangerous (loss of consciousness, eventually a coma). Even with intervention, they are unpleasant.

Ice cream, R says.

Absolutely, I say.

But I’m full! E says.

Yes please! M says.

R calculates how much ice cream he needs. We all have a bowl of it — just, you understand, to keep him company. We sing and air guitar a bit more. Later, E’s numbers are fine.

I would never have dreamed that diabetes would mean ensuring that my child consumes chocolate ice cream with chocolate pieces. But hey. We made it.

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Well, I said to someone two days ago that I just didn’t know where to start. 

I have to accept that I will never be able to say it all.

So. Somewhere:

1) on November 15, E won the Kent Junior Piano Festival. If anyone is reading this who remembers, this was the big build up to the big concert. He won with Brubeck’s Take Five, Debussy’s Doctor Gradus Ad Parnassum, a Bach something (!), and one of his own compositions for him on piano, and M on violin. He won every category, and the overall prize, becoming the Kent Junior Pianist of the Year 2008. 

2) His composition was called ‘Interruptions and Surprises’. Four days later we all got the interruption and surprise of our lives: he was diagnosed with type 1 diabetes.

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There are many, many things to say about this condition — this major organ failure that suddenly exerts control over everything but everything in life.

We are coming back, all of us, to our lives. But it has been like a bomb going off. And I have an image of myself now trying to hold it back, to keep it contained, to soothe it.

But it won’t be soothed. It goes off, and you pick up the pieces.

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So. First things first.

1) he won’t die

2) he’s getting good care

3) he never was very unwell

4) friends and family have been just complete lifesavers. Thank you one and all.

5) I have never been so shaken in all my life. 

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Second things:

1) type 1 means insulin dependent, which means at the moment, injections 4x daily and blood tests 5x daily. He’s managing them all himself, has done from the beginning.

2) for those who know little, as I did, more facts: you cannot set levels of injections, and just do them. You must consistently track sugar levels in the blood through tests, then adjust the insulin according to what you eat, how much you eat, when you eat, how hot or cold you are, how much physical exercise you are doing or plan to do, what level you were before you started, etc. Etc. Etc. It is unbelievably complicated and difficult, and hey, we can do it — hey he can certainly do it — but I HAD NO IDEA. None.

3) good sugar control is the key to avoiding the risks of nasty complications, some of which are life-threatening. End of story.

4) there are many ‘forevers’: he will have it; we will worry about him in relation to it; he will carry it; his sister will worry about getting it; life has changed.

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They are back at school after a complete collapse of a Christmas break. E is thriving, still getting lots of top marks and just this week accepted a 100-page keyboard part for Jesus Christ Superstar. Good grief! He is an example of ‘getting on with it’.

M has suffered late in all this, only feeling able to wobble after the rest of us have steadied somewhat, but her strength is legend. Together we draw up a timetable for homework, violin, ballet, and already she knows that together we can all get back on track.

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Sigh. And us? We have some bad dreams. We’re tired. But we know why we’re here.


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.