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.

Hello all. Sorry to keep being a while, but I’m getting distracted into more solid things for the minute — a book, mainly. All the way it should be, as pointed out by Deborah (hello!) and Val (howdy!). 

However, if you’ll bear with me I’ll keep coming by here, just less often.

Things to say:

1) thank god for family. My favourite aunt Lois just visited last week, and she was a breath of welcome and fresh air. M thought she was the best thing since sliced bread. And really, any feeling of being special is good for M at the moment…

2) two people have now sent me Justin Webb’s Mail on Sunday article from this week, so I thought I’d pass it on. It’s very, very good. We knew about his son’s diagnosis somehow days after E was diagnosed, so I do feel we are going through this together. Somehow. But any visit to any diabetes forum will reveal that hundreds of parents are going through this together, daily…

3) You don’t get used to it. The oh-so-common perception of type 1 is that somehow a routine evolves, and ya just give ‘em shots, and gee, everything falls into place.

I can’t count the number of times well-meaning people have said to me: you’ll all get used to it. Well, I’ve got news for everyone: you never get used to it. You just stop bothering to talk about it. Diabetes is a chronic disease the parameters of which change minute by minute by hour by hour and daily, particularly in growing children.  

There are ways of coping, and ways of knowing how to make things better, sometimes. Steps to take. But each step is a decision, arrived at by another decision. Which may or may not be based on precedent. Several times a day.

All those type 1 diabetics who, again, I have heard so much about (from people, please note, who do not have diabetes in the family): so and so just got on with it, did it all without batting an eyelid, etc…okay, you can BET that ’so and so’ arrived at that casualness one of two ways: either through well-disguised, obsessive involvement with his or her blood sugar levels, carb consumption, and treatment, OR through bad blood sugar control. Because YOU CAN’T SEE IF A DIABETIC HAS GOT IT A LITTLE BIT WRONG. No one can. So for every diabetic who seems to be doing well, and who you cite as an example, there is every chance that actually he or she isn’t doing so well, and isn’t actually doing much to extend or preserve his or her life and quality of life.

Of course there are a great many who are doing everything in their power to keep good control, and succeeding, and I wish for that success with E and celebrate other successes daily. But my point is — unless you are there, you really don’t know, and can’t tell.

So there. 

Just a bit fed up.

Not that everyone doesn’t mean well. As I said. 

Sorry.

Just as I start this back up again, I find that I’m doing other, separate, more directed journal work, and letting this slip. Certain things in my life at the moment though feel imperative. Not with a frantic urgency, but with the feeling of get it down quick and messy now. So this blog I think may become irregular. I have only so much time and energy. 

The end result may be a book though. That’s the secret of it. A not so secret. But something that you whisper, in any case.

*

Meanwhile look at this. I heard from Lynne Rees recently, and she has started this really fine site, with regular writing prompts. Lynne Rees is very, very smart about writing generally, and about poetry in particular. She’s a stupendous teacher. And a rather fine poet. 

You will find if you go there that she’s put up a couple of prose poems from How to Be a Dragonfly, in order to illustrate the imperative. Aha! There’s that word again. The must-be-done-ness of it. Anyway, there are some responses to the prompt, and they’re good. Enjoy.

but several interesting snow creations…All melted now.

1) a fairy igloo, complete with gravel drive and leaf entrance

2) a large model of a certain part of the male anatomy (guess who’s nearly 13)

3) a seated cat, but the ears looked like a devil’s

4) a Henry Moore-like, pinhead snowman. Ran out of snow for the head…

*

Not unexpectedly, all the cold play brought on a mild hypo for E. When he came inside, he was too shaky to take off his boots, and had to suffer me mostly pulling him down the stairs to get them off. Would have been funny if he didn’t need to just sit down so badly….

It’s really very cold here. For England. We are lucky: last year double glazing throughout. Still, with the heat on, it’s chilly. 

Snow coming, weather people say. 

In town, homeless people of all ages sit on layers of cardboard. It’s just unspeakable, really. We are ashamed, but do little. Thoughts which have a regular rhythm in my life — I must go and do something about all this — occur with more frequency now. Lately, most days. And before that, most weeks.

Writing exists for me and is possible no matter what. It doesn’t need trappings.

I love teaching. But there are other things that need doing.

*

In this brittle morning, Schubert popped through the cat flap with a tiny, tiny wren. We flung the cat into the bathroom, and while he scrabbled and scrabbled at the door, we shooed the little bird out. At one point it flew into me, the gentlest bump, before veering outside.

(Photo by Steve Round, Cheshire, UK)

Hours later Schubert is still looking for it, roaming about. It’s the right decision, to protect what we can. But it’s not an entirely simple one.

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.