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I have heard from two parents today: one, H, whose son was diagnosed only 10 days ago.

For both, and for me and us, the lasting through is so hard. The holding-up. The way your life is shipwrecked. And you have to wander around, slowly re-collected, gathering up, all the pieces, new and old.

I find myself being in the position of old hand. 18 months in. Like in grief, you watch yourself move further away from that moment of change, that time of unremitting despair and numbing hard work.

I guess all I want to say is that it’s not that I don’t remember before diagnosis – it’s that I can’t, without the same crush of sadness as I felt at the start. So I don’t take myself there often.

So in that sense, um, I guess I’m not much help. Sorry.

But in every other sense: we help each other. Our children will grow up strong and healthy. Burdened – yes- but like us, with a deep understanding of what’s important.

They didn’t need this. Nor did we. Nor did our families.

Damn.

Thank goodness for small mercies. Friendship of a whole new type, to a whole new degree. Even in passing it means something real.

Hang in there, all of us.

– Posted using BlogPress from my iPhone

Location:Tile Kiln Hill,,United Kingdom

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I was going to write something completely different today. Yesterday was my birthday, and — despite E running consistently high now for two days, irritating but welcome growth spurt we think — things have been good: he took his Grade 7 piano exam and it went well. Daughter M won a poetry competition at her school — and played well in a concert last night.

***

Yet. This morning I open my work emails to find one from an ex-student and long-standing friend and colleague: her 12 year old son is in hospital, diagnosed yesterday with type 1 diabetes.

Aside from being heartbroken for her — such a blow, just a blow for her and her family — I was overrun by things I wanted to tell her. This is where I started:

 
Make sure he gets onto MDI — multi injections. Then say you know all about pumps and you want to get on the list. Ask to be taught carb counting as soon as possible.
 
DO NOT let them tell you to bring his numbers down mega-slow. It will take a few days, but sitting around 13+ is NOT right. Keep on top of changes to the amount of insulin so that he comes down in few days. We sat with high numbers for several weeks.
 
DO NOT let them tell you that he can’t eat this, and can’t eat that. We received advice that was more suited to type 2 when E was diagnosed, and it was devastating. Your son can eat a normal healthy diet, with treats etc. He can only really do this when you learn to carb count — so that you can always cover what he is eating with insulin.. Things like brown bread or brown pasta being better is NONSENSE. In fact these are harder to dose with type 1, because they take longer to digest and therefore you can’t be sure that the insulin with the meal has covered them. What you DO need to watch while on MDI are snacks without injecting — these will send his blood sugar up quickly. You need to keep them small or carb free: small packet of biscuits — or better, cold meats and cheese, which have no carb. We can talk more about this later.
 
Also, I would advise regularly testing before a meal and if you can bear to, 2.5 hours after as well. This will help you quickly learn how his long term insulin (Levermir) is working (before the meal) AND how the short-term (Novorapid) is working (after the meal). When E was diagnosed we were only told to test after eating — and this was patently outdated and darn near useless. We had no idea what was happening with his blood sugars for several weeks.
 
Get Lucozade in the house — the fizzy stuff, if he likes it. Or small cans of coke. Glucose tablets and jelly babies work well, but fizzy is faster. Also small cartons of apple juice work very well. Get 15g carb snacks for after hypos: pre-packed small packets of biscuits like maryland choc chip or mcvitties digestives. Spread these things around the house — in his room, in your cars, in the kitchen. He will come home with a lot of kit. Empty out a cupboard in the kitchen and keep everything together.
 
The team at [our local hospital] are very nice, but not always up to the minute. Get yourself onto Children with Diabetes UK AND join the Diabetes Support Forum…. Go to the Parents’ section and put yourself on it. You will find a huge amount of support.
 
Oh dammit, H. It’s a hard road. I’m so sorry.
 
Call me when/if you can. I’m here.
 
Sorry if this is information overload. It will make sense very quickly though, and I wanted to tell you some things.
 
I’m so upset for you and your family. It will get much better, but…cry all you like. I cried for weeks and weeks and months. And we still cry now.
 
xxoo Patricia
***
That’s really all I want to say today. The same age as E at diagnosis. She said in her note that she kept up with this blog. And that she used it to learn some things before they went to the doctor’s with what they suspected.
 
In my head today I am re-running the scenes of diagnosis, and the horrible sense that we thought we were learning when in fact we knew so little. For so long T1 seemed difficult, but doable once we ‘figured it out’. The real sinking heart has come over a number of months, even a year, with the realisation that we will never figure it out. And that some of the initial information we received was inaccurate, plain mis-leading and patronising.
 
Another time I’ll make a clearer list of what I would have found helpful at diagnosis. It’s so confusing. But for now, well. I wish her luck, and wish, as I so often do, that I could just take this away from our beautiful children.

1) even though you don’t know why something has happened, you know how to make it better — and it gets better. We don’t know why E’s numbers have been so low the last few days. But we have settled things by going for a long term 85% temp basal (lowering across the board), even lowering meal ratios by 15% (eg the amount of insulin to number of grams of carb: this changes in every person, from meal to meal, but usually remains the same for long-ish stretches day to day). And he has stabilised. 

2) the sun is shining.

3) you find your daughter a great pair of shoes that fit for once, and are all European, on sale, and gorgeous and she loves them.

4) you go shopping with your daughter, and she winds scarves all around you a la Gok’s Fashion and discusses things like textured finishes. And she’s only nine years old.

5) you’ve written one poem anyway that begins to starts to seems to get close to some things you might want to say. 

***

Suffice it to say that two nights ago we had a REALLY grim run. E dragged the bottom for hour after hour, with two hypos which made the horrible adrenalin/fear come.

It’s hard to explain this without getting emotional. But it’s pretty awful — really awful — to see one of the three people you love most in the world, and one of the two people you actually brought into the world — in such confused fear. So frightened, and feeling so alone. Because we don’t have hypos, and have never had one. We can’t know what it’s like to be muddled, to be angry and afraid in that way, and feeling not safe. It’s the brain that does this, when starved of glucose. It begins to race adrenalin into the system, which produces panic and fear…

We reduced the insulin big-time, kept giving carb without insulin, and he came up. Eventually. By morning.

And yes, if it weren’t for my children, I would give up my life for him not to have to deal with this. Not to go through this. The everyday relentlessness of it — and oh, as if that weren’t enough, the added one-off panics, the moments of tipping over into frightening lows or sick-making highs.

So yesterday was not a good day. He stayed home from school, completely exhausted. I wrote a poem and tried to answer emails.

We put him on 85%, where he remains.

He made it through his performance last night — which we all attended and enjoyed — and also sang today in a chamber choir competition. He and his sister played and talked for two hours this afternoon. This has happened before: after a crisis, they intuitively want to re-connect.

And yes, his sister. Her day at school yesterday was also pretty dreadful. She cried in Maths and cried during English. She was worried about him. And angry that he was home for the second day this week. That maybe we were taking more care of him than her. And recovering from a cold, trying to understand it all and deal with all this conflict inside her… 

She had a long, honest talk with her father, and her teachers looked out for her.

*** 

She’s okay today. Miraculously, after the unremitting rock bottom two nights ago, somehow we are all okay. Again I say: it’s incredible what you can get used to, how many blows you can take and then get up and enjoy the sunshine.

I started this meaning to sound better….and I hope I do. I feel it. A bit sad, a bit flat. But this is not unusual. I know it will wear off a bit.

And we went shopping. And, I’ll say again, the sun really did shine.

The low gets worse. It scares him. 
It scares you.
You count his breaths. 

You can’t untangle this.
Or stop and start again.
He’s hanging onto your hand.

In that darkness you seal the deal:
your death for his unencumbered life.
You are more than ready to say yes.

You lay your palm on his head
like you used to
back when the fever would pass.

 

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.

When E was diagnosed he stayed in a nearby hospital, about 30 minutes away. It isn’t our local one, but has a paed ward, etc, so that’s where he was.

I’ve since had no reason to go back. All of our consultant appointments are at the local hospital or at our shared care hospital some one and a half hours away.

I went back two days ago to pick up a CGM for E — great news in itself, and more on that later.

The ride there wasn’t great, but I was under some time pressure and that was occupying me. Then when I arrived, it began to hit. I remembered that day. OH had gone ahead with E, and I had joined from work. I remember not being able to find a parking space. And becoming hysterical, screaming and crying at the parking attendant that my son had just been admitted. Literally. I remember being completely and utterly beside myself, so desperate to get into them, although I knew that they would just be sitting there waiting to be seen….

Back to two days ago. I picked up the CGM. No problem.

I got back in the car and started driving out. And was overcome by memories. How I rushed to get back to my daughter, still at school, driving down the getting-dark road. How my father-in-law rang, having found messages from his son left all over. I pulled over to speak to him in that petrol station. My father-in-law, a retired doctor, took the symptoms from me. I sat there and said it over and over. I don’t know what he thought of me… Then, he was quite silent, and said he would phone the rest of the family.

So two days ago I drove back on my own just as I had done sixteen months ago. It was darkening then, and darkening now too.

I wish it had never happened, any of it. And I don’t like going back to that time, though clearly it is never very far away. For me, remembering what things were like before diagnosis is one of the very worst aspects to all of this. Does that sound selfish? And specifically, it’s the memory of how I felt about the future, what I thought the future would be like. I know we can’t predict it. But not knowing is part of the lightness, the hope and possibility of it.

The drive back from the hospital reminded me how very heavy diagnosis is. The weight of it and all it means. The whole future, so many ingredients of that future, barreling in on you, immoveable, endless and permanent. And worse, this future is your child’s. Your child has to face more in the future than you ever, ever did or wanted to. And none of them are positive, or even, I have to say, particularly hopeful.

As parents and carers and believers in advancements and how our attention can help, we search for brightness. Which is our job, and the best we can do, yes.

Over time, we have all pushed our way out from under it somewhat, but I have to confess that with diagnosis a rock became lodged in me. Perhaps like a gunshot, or shrapnel. And it’s like lead, dragging itself to a memory or a feeling, stirring just when I think so much has grown up around it.

And I’m going to share something else. Soon after E’s diagnosis, in one of our tearful heart-to-hearts, my daughter said it all so well. She said, now I know what forever is.

That’s right. And it’s not really a thing to know. It’s so heavy to carry around.

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…


I guess you could say that if it weren’t for this group of folks, I wouldn’t have come back to blogging (okay okay, well I’m glad I did, even if no one else is!). And they are the good people on the Diabetes Support Forum. Also please note the link in my sidebar, pride of place in blog links…

I discovered this forum by surfing Diabetes UK, looking for something, anything to connect with in the early days. It started up in October or November 08 (someone will correct me, I’m sure!), and I joined in February 09 I think (again, one of the moderators will know this if you’re reading!).

And what a connection. The support, advice, information, good humour and sympathy found on this forum is unlike anything I’ve ever experienced, and has saved my bacon more than once. I am a pretty committed non-club person. I really don’t like ‘belonging’. I resist group behaviour in most circumstances.

However. The forum has and continues to be a place to go — really, if truth be told, the only place to go — where everyone gets it. And there are times when you need that more than anything else in the world. You just need someone to get it.

***

E ended up in hospital for a night in September. Pump malfunction, but we didn’t know that at the time and couldn’t get to the bottom of it. We tried everything. We had discovered him sky-high 3 hours after eating. Despite trying to correct these high levels with more insulin, within 40 minutes he was violently throwing up, and had high ketones. And begging, begging for it to stop, for us to help him. It was, I don’t mind saying, completely and utterly gut-wrenching.

There was a chance he had quickly gone into DKA (ketoacidosis, a life-threatening state of high blood sugars), so OH whipped him off to hospital. I stayed behind, because M was sleeping.

It was the middle of the night. The hospital is 30 minutes away. I was beside myself.

I got on the forum, seeing if anyone was awake. And lo, two young ladies, both with Type 1 diabetes, were. Their concern and knowledge was truly like a light in the night. I heard back from OH that E wasn’t in DKA, and immediately let the forum know. Their relief and joy were palpable, seeming to flood back through the computer straight into me. We talked for a while longer, until E was stable.

I will never, ever forget their solidarity through those couple of hours. The whole time, I fought back the feeling of complete desolation and despair I felt the second night E was in hospital at diagnosis…Which was without doubt the worst night of my life.

Only this time, it was different. I wasn’t alone.

**

Telling my daughter the next morning that E was in hospital nearly did me in. By this point we knew he was fine, and coming home… But she began to get ready for school, tears pouring down her face, refusing to talk about it. Dreadful. I made her stay home. I convinced her that she needed to see he was okay. And he was. When he walked in the door, she threw herself at him and squeezed him so he could hardly breathe. Everyone was a bit teary. Of course.

***

It’s incredible how much strength and hope strangers can give you — actually now of course I’d call the forum full of friends… but it’s the way sometimes that a stranger will enter your space, will give of themselves…in perhaps the way that family, for some reason, or even your closest friends, sometimes will not or cannot.

If there’s one gift from this whole life-inside-out turn of events, it’s the sure knowledge and belief in…well I’ll go ahead and say it: humanity.

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

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Disclaimer

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