The ghost of diabetes Christmas past – by Olly Double

oliver-double-new-150x150I’ve blogged about Tom’s terrifying diagnosis before but as it happened shortly before Christmas, the memory of it always comes back to me whenever it’s shortly before Christmas. As I write this, it’s shortly before Christmas 2016, which means it’s sixteen years since it happened. So that’s 16 years since Type 1 diabetes became an unwanted house guest for our family.

Tom’s 17 now, so it’s not often that I get to spend good quality one-on-one time with him. He has school work to be getting on with, plus his circle of friends, and he also has a girlfriend now. In other words, plenty of stuff far more important or interesting than spending time with his dad.

But yesterday, he agreed to come with me into Canterbury to do some Christmas shopping. He had some things he needed to get, and he had a meeting there in the afternoon, so getting a lift in with me made sense for him. Christmas shopping was as grisly as you’d expect – hassled, grim-faced shoppers trudging miserably from shop to shop under strings of twinkling lights, whilst tinny speakers relentlessly pump Shakin’ Stevens’ ‘Merry Christmas Everyone’ at their ears.

But we quite enjoyed it. We each had various things we had to get, and although we weren’t quite sure where we were going to get them from, we never succumbed to panic. However, we did have to bite the bullet and venture into uncharted territory, paying a visit not just to Wilko but also Claire’s Accessories. Before crossing the dark threshold of Wilko, I offered some words of wisdom to help Tom survive the ordeal. ‘It’ll be a lot easier if you pretend that we’re on safari while we’re in there. We’re just observers.’

In we went, and to be fair, it could have been far worse. True, there were lots of sad-eyed people crowded into aisles laden with bargain products. But we found what we needed, the quality was surprisingly good, and very reasonably-priced to boot. After queuing for several minutes, we walked out through the exit door to once more taste fresh air and freedom. ‘It did help pretending we were on safari,’ said Tom, clearly amused. ‘It definitely makes it easier knowing you’re just an observer – rather than one of the ones who’ve accepted their fate and become regular customers.’

One of the items of Tom’s shopping list was for his girlfriend. ‘She’s working on Christmas Eve, so she wants some festive earrings. She said she wants really tacky ones – where do you think I’ll be able to get them?’ I couldn’t immediately think of anywhere, but just then Claire’s Accessories hove into view.

‘I think this is the place we’re looking for, mate,’ I said. ‘But remember the safari technique – we’re just observers.’

Claire’s Accessories did not disappoint – earrings like baubles, earrings like parcels, earrings like elves’ boots, and weird little flock-covered Santa earrings. Tom eventually chose a pair shaped like inch-long glittery Christmas trees and we joined the queue of the damned waiting to pay for their purchases at the till.

You might have noticed that diabetes hasn’t yet made its presence felt in our Christmas shopping expedition. When Joe and Tom were small, we would definitely not be getting off so lightly. We would have had to stop several times for snacks, blood glucose tests and hypo treatments. But time moves on and things change. For starters, the regime they’re on has given them far more control over their blood sugars, and that means they tend to stay in range far more often. Gone are the days when Jacqui or I would set the alarm every night to wake ourselves up in the wee small hours to make sure they weren’t heading for a potentially life-threatening hypo before morning.

Then there’s the fact that they now do the vast majority of their diabetes care for themselves, reducing our involvement to a bare minimum. That’s the main reason I hardly ever blog for Diabetes UK now – I simply don’t have that much to say about it any more. I was reminded of just how irrelevant I am in the whole process back in the summer. Joe was home from his first year at university, and I was having lunch with him. He was having a nasty hypo, and I asked him if he needed any help. He politely said no in a way that made me realise how patronising I’d just been.

Anyway, standing there waiting for the till at Claire’s Accessories, I started talking to Tom about his diagnosis. We’ve never kept from him just how touch-and-go it was. Falling into a coma, being whisked into London in an ambulance to the paediatric intensive care unit at Guy’s Hospital, lying there with all kind of tubes and wires attached to his tiny, emaciated body. But standing in that shop surrounded by cheap jewellery and accessories, we don’t go into the grim details. It’s just a quick reminiscence, a memory of something that always comes back to both Jacqui and me at this time of year.

What I don’t tell Tom at that point is precisely what I’m feeling as I remember. I’m sometimes struck with waves of love for him that are so powerful that I feel like they could knock me to the floor. It’s a kind of elemental paternal love that makes me want to be able to keep him safe and happy no matter what. I look at him and I feel so unutterably grateful that he’s still with us. I remember so powerfully being by his bed in the hospital, wondering whether he would ever get to play with the Postman Pat toys we’d already bought and wrapped up for his Christmas present that year. As it turned out, not only did he have a massive amount of fun with those toys, he grew into the fantastic, lanky, ridiculously imaginative young man that was standing next to me waiting to buy ironic Christmas tree earrings for his girlfriend.

But the fact that we’ve had the privilege of his company from December 2000 to the present isn’t just down to luck. The reason Tom got so very ill back then because he was initially misdiagnosed. Gastroenteritis, they said. They’d sent off his urine samples to be tested, and the test came back negative – because the lab had somehow failed to test for glucose.

Jacqui had become increasingly distraught when Tom resolutely failed to get better as the doctors kept reassuring us that he would. And it was her dogged persistence – her refusal to be patronised and written off as an over-anxious parent – that eventually persuaded a doctor to test his blood and find that his sugars were so high that the blood glucose meter couldn’t put a number on them. And it was only then that Tom was admitted to hospital.

Essentially, it was Jacqui’s assertiveness that saved Tom. Having done so, she proceeded to teach herself about the latest and best ways of treating and living with diabetes, and then fought to get Tom and Joe moved from a mixed insulin regime to multiple daily injections and finally insulin pumps, in spite of resistance from our local clinic. And those efforts have kept our boys safe and well through their childhood and seen them bloom into the independent, self-reliant young men that they are today.

That first Christmas with diabetes wasn’t the most relaxed. I have a memory from the time between Tom being discharged from hospital and Christmas Day which sums that festive season up for me. He’d had a nasty hypo in the night, and I can still vividly picture him, a tiny boy sitting in the middle of our double bed in his pyjamas, having to eat a massive bowl of dry Cheerios to stabilise his levels even though he was droopy-eyed with tiredness. Not the nicest yuletide memory, but far, far preferable to what we’d have been haunted by every Christmas if things had turned out differently.

So this Christmas, I’ll drink a toast to Jacqui’s doggedness. Diabetes is, at the very least, a pain in the rear end, and that means we have to work and learn and fight to stop it disrupting out lives. And it’s worth it, because it gives us precious moments like going on safari in Wilko and Claire’s Accessories with Tom.

As I said, I didn’t tell Tom about the frantic waves of love for him that I felt when we were queueing to pay for the Christmas tree earrings. No teenager wants to hear that from his dad whilst standing in a retailer specialising in bargain jewellery and accessories. I can just imagine his response: ‘Urgh, shut up Dad, you’re embarrassing me!’

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