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Let’s take it from yesterday afternoon.

1) Meeting at the Council re Laureate developments, yay! Exciting stuff. Shot out of there like a bat out of hell to go to

2) M’s concert, in which she played in a junior orchestra, and a solo violin piece. And sang. Waved goodbye to E & R who went to

3) E’s concert, where he played bassoon. And sang. M and I skipped this bit, so we could head home, eat and prepare 

4)  the poem she was reading today in a poetry reading competition. Though she wasn’t competing, just reading. I was one of the judges, and…wouldn’t be fair! She bathed, got to bed and

5) E & R arrive home. E sky high sugars from a snack before the concert, not wanting to go low and have a hypo. He eats more and takes his short-acting insulin. He’s shattered, so we tuck him in

6) only to wake at 12.30 am to E having his first nighttime hypo. Dreadful for him, worst one yet. Treated and settled once again, with promise to wake him and test his blood 

7) at 2.30 am. Which we do. All fine. This morning both children and us look and feel like wet dishcloths. Off M goes to school, where I meet her

8) for the poetry reading competition. A fine time had by all, and worthy winners. Photos taken. Half an hour in Starbucks for me then, where I manage to grab some writing time. Then

9) off to ballet. Afterward 

10) we head to coffee. Friends I’ve known for years, godsends. An entertaining and relaxing hour. Too soon

11) head home. Within 5 minutes E back from school. Within 10 minutes

12) he realises he’s low again, another hypo. After treatment we are able figure he overestimated lunch, too much insulin.

13) He says he thinks the lows are worth it for the better sugar levels, even if they mean he grinds to a halt for 20 minutes at time. I tell him his father and I will be looking at the whole picture tonight, to try to reduce them. He shrugs, his newly 13 yr old mind set. He wants good numbers. I admire him more than I can say.

*

It’s a bit like that at the moment. The pace of life, believe it or not, has actually slowed slightly. We deliberately keep some things at bay, to make grudging room for the uninvited guest called Diabetes. However. It’s important to keep doing the things that are vital, that feel nourishing, in all ways. To do so you have to make it look easy. Because otherwise it’s all a battle and self-pitying and patently defeating the purpose But I confess to feeling at times like I’m not waving but drowning.

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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.

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.

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.

*

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.

*

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. 

*

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.

*

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.

*

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


I absolutely cannot believe how long it’s been since I’ve been able to get to this page, this computer. I can’t even bear to make a complete list of what’s been going on. Chickens, lack of heads. Hedges backward. Meeting myself coming. Etc.

Despite my general meltdown, everything seems to have gone just completely swimmingly. Where did I leave you? Ah yes, after wonderful Canterbury Poet of the Year. Then there was the Booker verdict night: really good fun, a good read, good writers — and a surprise winner in The White Tiger. Canterbury’s verdict was Philip Hensher’s Northern Clemency. I’ve read the former (which is why I was a little surprised). Will now read the latter, which got absolutely rave reviews, particularly from Andrew McGuinness, one of the writers there.

Then on the 16th there was the Canterbury Laureate reception and launch of the anthology from the year, called Entirely New: which was wonderful. I was digging deep as they say that day, starting exhausted. But the readings — the children, the adults — and my purple cardigan and tights — kept me going. Another good turnout, and a chance to read some new work. A real corker of a night, an uplift.

THEN at the weekend, a write around town day, only I didn’t do the around town bit. I went down and set up some triggers for whomever was there, then fetched and carried E to piano, made lunch, etc. Then popped into town for the end, to see how it went. By that point I was feeling altogether grey with it all.

Meanwhile the poems from the labyrinth day have been exhibited, and Jan Sellers and I have spent the last couple of days fine-tuning those to go up on — Canterbury buses! Yes, wonderful isn’t it? More on this when it comes to fruition.

Finally (for me, anyway) the Tuesday Readings I’m organising at University of Kent. We had Matthew Welton, then last week Perdika poets, and coming up I am thrilled to say that we have Moniza Alvi and Marianne Boruch joining us. I just can’t, can’t wait. They are both just superb, and exciting, and…if you don’t have your tickets and can get one, come. You won’t regret it. (Meanwhile I am charged with the nuts and bolts which are always the pain of it all: where to get the wine from, how to pay for it, how to pay the guest house, how to make sure the tables get set up when I’m busy with the writers and no one seems to be able to do it, surprise surprise. Etc. Hair-tearing.)

*

But beyond all this, more and most importantly, two things:

1) M went to Howlett’s zoo with wonderful friend Nancy (see photos from flickr in sidebar). And how lucky were they?! Lions, tigers, bears…and M’s favourite show, Roar, being filmed! Nancy being Nancy, they managed to keep out of camera shot as requested, watch the whole thing, and get a photo of M with the presenter (who happens to be the one on this clip!). M has been drawing lots of animals this half term, freehand, and has committed whole books of information about them to memory. Hmm…a vet in the making?!

2) E played 5 different instruments in 5 different ensembles on Wednesday night at the Simon Langton Boys Grammar concert. Oh yes he did. Triangle in orchestra (hilarious! not as easy as you’d think, but it doesn’t half look funny); bassoon in wind band (again, an odd instrument really), sang in the choir (by the Rivers of Babylon, fab), some kind of massive drum in a New Orleans jazz band (that woke M up!). And his first piano solo in this school, Brubeck’s Take Five. He did a stunning, stunning job, strolling on without music, jazzing through it, standing up with a nod, and strolling off. Needless to say. We forget he’s only twelve. He seems to have a huge capacity for life, and remain essentially level-headed. We try not to be embarrassingly proud.

 

So, just so we remember what’s important (apologies for sound quality — went for a decent performance rather than purity of sound…amazing just how many performances of this piece are quite, well, below par, speeding up all over the place, messy…makes me realise just how accomplished E is, she says, once again basking in her son’s talents…):

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.