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It’s been a shock to go from my peaceful mornings at the hut to a life punctuated by the fast train from Kent to St Pancras, but so it has been: external examining at Norwich University College of the Arts for three days, home examining at my own, then to York for a NAWE meeting, then three more days examining at my own institution again.

Ack. Meanwhile the sun has mostly shone, despite the cool wind. Like life of course. Mostly sunny, a more or less constant cold wind. That you just learn to get used to.

Three items for report (how many meeting have I been in the last ten days, you ask?!):

1) desperate cat Cleo is going on a singles’ holiday this weekend. Eg we hope for kittens in late August! Watch this space. The relief will be mutual, to be blunt. The poor girl spends some of every evening trying to settle in the bathroom, with bed, tray and food. Poor thing. Poor us. At its worst, we can’t hear ourselves speak. And her brother hisses at her all the time… Bring on some peace (and for her, satisfaction?!).

2) the Tooth Fairy has only just recovered from being in deep doo doos in our house. Not one, but two teeth languished under daughter M’s pillow. For a WEEK! I know, someone shoot that fairy. But the worst of it has been M’s eventual understanding, once the glowering passed. I know the tooth fairy has been very busy, she says. Eek, I can’t stand the guilt! Anyway, now the teeth are in the fairy’s castle, and M has not only £2, but a rather glittery bracelet (hopefully not made out of teeth…).

3) E’s numbers have been generally better. Again, some weird and wonderful nights: a drop from 8mmols to 1.8mmols once (yikes!), and another of a random rise… But these weirdnesses aside, things have eased. We are off to clinic for CGM instruction today. Another matter for report….!

***

Finally, at the gym yesterday (for the first time in two weeks…really, thank goodness the place doesn’t have cameras. I don’t think it does, anyway…), I encountered one of my favourite songs of the moment, by Jolie Holland. She is, if anyone is still around from my other blog, one of my favourite artists, but this song…I don’t know. I listened and thought you know, life is random. Life is harrying and harried. And is all about risk, about doing what you don’t and can’t know. And sometimes it works out, and sometimes it doesn’t. On Jolie Holland’s website, it says this about the song:

“Palmyra” is a prayer for the broken-hearted and traumatized, both individuals and communities. The first half paints a picture a love-lorn traveler pulling herself back together after a disastrous affair. The second half is lovingly and respectfully dedicated to the hard-pressed people of New Orleans’ Ninth Ward, hallowed estuary of some of the finest music the world has ever witnessed.

(But the real place to check her out is probably her myspace page, in which I have just spent several happy minutes…)

For me, the song’s somehow about strength. My OH and I met over 25 years ago. We married 22 years ago a week from tomorrow. He is my soul mate and best friend. And one of the very few people in my life that I haven’t had to leave for some reason, whom I haven’t left and hasn’t left me. A gift in my life I never really thought my life would hold or be able to hold. How very very lucky and blessed we are in this way. Just wanted to say that. He got the album this song comes from for me. He’s not mad on the music, but knows that I am, and lets me dance and sing to it in the kitchen. Even while he’s making dinner. What a guy.

Last weekend E had a chamber choir concert in a nearby village. He’d been dropped off early for rehearsal (downing a sandwich and milk before leaving), and I rolled up to hear the concert two hours later.

As soon as I arrive, he strolls over, a bit of a sheepish grin. Well it’s like this Mum. I’ve just eaten four sandwiches that I thought were equal to a piece of bread each, but then I realised that each was equal to half a piece. So… I think I need some free carb, yes? Big smile.

Oh my. The concert is starting in fewer than 5 mins. My brain goes into a kind of panic, and I can’t do my sums for the LIFE of me. Let’s see, one piece of  bread is 15 g carb, which is what he bolused for. Four times. So he bolused for 60 g of carb.

So… I literally cannot think. In the end of course he works it out (typical!), and I confirm: he should have bolused for more like 30g of carb. So he had taken TWICE as much insulin as he should have.

Oops.

People are sitting down and getting ready. He has two juices on him (equalling 40 g carb), but I also have a pack of fruit pastilles. Unfortunately due to my fuzzy brain I am unsure a) how many fruit pastilles are in a pack and b) quite how much carb each is. OH WELL.

I am able to reason though that if he needs it desperately, the juice will work faster, so it should be saved for an actual hypo just in case. I therefore throw the fruit pastilles at him and tell him to eat the whole thing right away. I manage to catch both conductors and let them know what’s happened. Fortunately they are the same great teachers who took him on a choir tour to the Isle of Wight last autumn, so they know what’s what. Phew. Once I sit down I am able to calculate that if each fruit pastille is roughly 4 g each, and there are 10 or so in the pack, he should be fine. Phew.

My phone vibrates: Text me if I look low.

Eek.

So the concert starts. It sounds brilliant, lots of complicated and quite thrilling choral music. I watch him like a hawk. He makes it.

He tests at the interval: 8.6mmols. Decent, but it feels low for partway through a dose AND one propped up by a whack of sugar, which will go through fast. I steal a biscuit and get it to him, thus sparking the whole entourage of 20 boys to search out more biscuits.

Oops.

He has one more set to get through, and does so. Sits down with the others, tests again and texts me: 10.5 mmols.

Phew.

At home, all remains even. He doesn’t eat anything else, and goes to bed on a decent number. Wakes up on 5.6mmols. Ker-ching!

***

Really not an experience I would choose to have. Of course. But I was so proud of him for noticing his mistake, for addressing it, and for holding it together and putting in a good performance.

The point is: he could have done it himself. He could have managed the whole thing. We were there supporting each other, and it was therefore less stressful — but he could have done it.

OH was not happy not to be there. Understandably. You want to be there through everything.

But E did it. And could have done it without either of us. Maybe a bit more slapdash, but it would have worked.

Only one thing made me throw up my hands: as we leave the concert, one of his friends calls out hey, thanks for the fruit pastilles!

I turn to E. I don’t like the blackcurrant ones, he says. Sheepishly.

Argh!

1) M’s school did speak to the two year groups as promised. M reports it was handled well: an analogy with a key was used apparently, such that the key is the workings of the pancreas. In type 2 the key is a bit broken, not working so well, but a bit. In type 1 there is no key. Somehow this was used to illustrate how the types of diabetes were completely different, and most especially that type 1 is not something you can catch, or something that is the person’s fault, or anything. M did not feel on the spot. And the ‘friends’ who had teased her just the day before said nothing, even though she was sitting next to one. 

It’s interesting, isn’t it, how quiet a bully goes when shown to be wrong?

So all in all, satisfactory outcome! M is infinitely happier now that the ‘truth is out’, and we’re pleased with the school, will write a note saying so.

2) We have yet to try the Bayer Contour USB. Things have been too frantic. We need a bit of head space. And E is, as I’ve said, always slightly resistant to another unfamiliar thing when he’s full swing into his life. And who can blame him? May well be Easter break now….

3) E received a Distinction for his Grade 7 piano exam! Dig it. Barely 14 years old. Absolutely brilliant news.

4) M won a poetry reading competition on the same day. The girl understands it.

5) And I have been given a mini-residency at the Little Blue Hut on Tankerton beach. In which I will sit and write, and walk and think, for three days a week over six weeks, starting 21 April! I am so excited about this I could pop, seriously…It seems so out of reach at the moment to be able to do anything like that — but hey, it will happen. I will finish teaching next week, take a break during which I do my marking, and return to write. To write! To think! To just BE. Incredible. Watch this space.

 

I have made a point of trying to build links with fellow d-bloggers. And I’ve got my all-time favourite support forum on my sidebar too.

But something else occurred to me yesterday. I want to tell you about JDRF. Juvenile Diabetes Research Fund. A global organisation which funds research of all sorts into type 1 diabetes. And specifically, into a CURE. Yes, a CURE.

This will happen some day. Don’t get me started, because even though the song I’m going to link to here makes me happy, thinking about how badly we all want a cure makes me cry.

If you don’t know JDRF, you need to. It’s much less well known that Diabetes UK, which also helps fund research and support those with diabetes — though Diabetes UK does spread the it out a bit, and take on type 2 diabetes as well. But JDRF is the core stuff. There’s a branch near you. And a central one in your country. 

We give to JDRF. We can’t leave it to someone else to do. We’re all in this together.

Which brings me to my song for today. All These Things that I Have Done, by The Killers. On my new Killers playlist, put on my iPhone by my son. You know, the one with type 1 diabetes. Who still loves his music, his drama, his politics and philosophy. Who is still infinitely kind and good despite everything he goes through. How we long for a cure sometime in his long, long life to come.

In fact, as I type this I can hear him playing the very same song downstairs on the computer. While doing his homework mind you —  but we won’t go there!

I just want to say to the world that we are grateful. For our son only having type 1 diabetes, and not, like the son of a friend of ours, something else so sinister that his life hangs in the balance.

That our son was born in this age and country. That we have a national health system.

And for so many things personally: each other. A fine son and daughter.

But mostly, today, that science and medicine know how to keep our son alive.

After seemingly solving high night time blood sugars through a tiny raising of insulin, over the last two nights we’ve had to steadily drop it down again. Sigh. He woke up one morning VERY low…We’ve been lucky that he’s never been so low as to be unconscious or not able to look after himself…but some people with diabetes, when they encounter numbers as low as he has had, find themselves unconsciousness, or worse.

SO. We had two nights of unbroken sleep (the first since Christmas), but are now back on the treadmill of night testing. Things are just too unpredictable at the moment.

***

All that aside (yay!), meanwhile two more furry creatures have entered our lives. Meet Mimi:

and

Peaches:

They are very gorgeous, good fun, cuddly, and make a pretty hilarious soundtrack, with their squeaks and boinks…

This is the first time we have ever had guinea pigs, and they arrive after three years of soulful longing by daughter M, who had reached the point of weeping when we left pet shops, and railing against all who keep pets and don’t take care of them, because she would do so much better a job and REALLY love them…This is all true, of course. Love them she does, taking full responsibility for feeding and cuddles.

The cats of course are bemused: what could possibly lie behind that closed door? Obviously, we aren’t letting  them in there yet. If ever. Schubert has caught an astonishing array of beasties in the garden over the last couple of years — countless voles, mice, a snake, three birds, two rabbits….I know, I know. It’s a bit much. So we are being wary, to say the least. Last night I had to get up and put a suitcase in front of the door, they were scratching at it so much. It’s cat-night-fun as much as anything, I’m sure…

***

Also in this category was a happy gym morning yesterday: this time another song from E’s playlist, and one that is so bouncy  and postivie that I never do anything but smile when I hear it. I realise now that the ups and downs of all this often bear little relation to the ups and downs of blood sugar numbers. They are as much if not more to do my own relative fragility. Anyway, the song. Peace and love man…

As anyone who moved over from my other blog will know, I am prone to weeping both on the way to the gym (hearing Obama’s acceptance speech, for instance) and while actually in the gym (endorphins, no doubt).

In general — and I’m sure you’ll understand — I have cried more than I have ever cried in my life these last 15 months, since E’s diagnosis. That’s just the fact of it.

However, I don’t cry as much as I used to, or as uncontrollably, or without warning. Which is altogether easier to manage!

However. Again. I do still often — VERY often — feel tearful in the gym. The harder I work, the more I cry.

I always listen to music there. And I almost always listen to playlists that E has put together and put on my iPod (sorry, now iPhone!). These two are from his original playlist, made for me about two months before his diagnosis. And they are this morning’s gym weeps. I almost had to get off the bike.

Mainly because I love his passion for life. And I won’t let all this get the best of me. Just as he hasn’t right from the beginning.

and

Setting sail

In November 2008 my 12 year old son was diagnosed with type 1 diabetes. The effect of this event on me -- and on our nuclear family -- was like being thrown overboard and watching the ship leave.

'Dealing with type 1' in the family has morphed into another sort of 'dealing' -- a wholesale resituating of parenting, of family dynamics...of life.

At my son's diagnosis I could not to locate a record of what living with a type 1 child in the family is like. I could not see myself or our family anywhere. I longed for a starting point, a resource and a sense of the future. Being a writer, my instinct is to write it. This space, I hope, is a start.

Blood Sugar Ranges (UK)

<4 mmols = low or hypo, life-threatening if untreated
4-8 mmols = within target range
8-13 mmols = high but not usually dangerous
14+ mmols = very high, or hyper, life-threatening if untreated

Bubbles

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Distance Travelled

Disclaimer

I am not a medical professional. Any view expressed here is my opinion, gleaned from experience, anecdote or available research.