Ten months in

It has been a little while since I’ve written anything, but I’ve found myself reflecting a lot recently on how far we’ve come as a family.

It’s now just over 10 months since T was diagnosed with Type 1 Diabetes (T1D). While it still isn’t smooth sailing all the time, the difficult days don’t seem to come quite as often. We’re learning when to trust our instincts and, just as importantly, when to let go a little.

It’s been a busy few weeks, including a weekend away in Italy, two trips back to the UK (one for T’s six-monthly diabetes review), play dates and the return of swimming lessons. Each of these brings its own challenges, but we’re learning to take them in our stride. Every new experience teaches us something.

I actually started writing this while watching the Wimbledon Men’s Final, where one of the finalists, Alexander Zverev, has T1D. Although he didn’t win, watching athletes like him gives me hope that anything is possible for T. To compete at that level while constantly thinking about insulin, glucose, fuelling your body and only getting the briefest glance at your blood sugar levels between games is incredible. We are a long way from that, but I hope that one day T will know his body so well that diabetes won’t stop him from playing whatever sport he loves, at whatever level he chooses.

Learning to embrace adventures

Reading this back, it probably sounds like we’ve got everything under control. A few weekends ago, I might have written a very different story.

We decided to make the most of where we live and drove a few hours to the beautiful city of Matera, famous for being one of the filming locations for a James Bond movie. It started as the relaxing weekend we’d imagined, but it didn’t stay that way.

We ate out more in that one weekend than we probably ever have post-diagnosis, trying to perfect the art of carb counting, making educated guesses, using the Carbs & Cals app that I’ve mentioned before, and, most importantly, trying to let T simply be a five-year-old who could enjoy a burger without us saying no.

Overall, we actually felt much more confident with that side of things.

What we didn’t expect was having to change two insulin pods within 48 hours.

The second change happened in the bathroom of a restaurant, just as our food arrived. Despite giving a correction about an hour before lunch, T’s glucose levels just kept climbing. Something didn’t feel right.

It was the first time I’d ever changed an insulin pump in a toilet, never mind a restaurant toilet under a time pressure. I did suggest doing it discreetly at the table, but T wasn’t keen. Looking back, I completely understand why. No five-year-old wants that kind of attention.

As it turned out, trusting our instincts was the right decision. His levels started coming down, even if he was thoroughly unimpressed with me at the time.

We’ll probably never know what caused it. Was it the 39°C heat? Had the insulin denatured? Was it a faulty pod? Had it been knocked? We honestly have no idea. Sometimes diabetes simply doesn’t give you the answers you’d like.

We’re also trying to let go a little more—although I should probably admit that I’m talking about myself here, as my husband is much better at saying yes to foods than I am.

During our latest trip to the UK for T’s diabetes review, we somehow managed to fit in two Wagamamas and a McDonald’s (we were there for 40 hours). The world didn’t end. His glucose levels eventually came back down. Most importantly, we had a little boy who was happy, enjoying the same meals as everyone else, and feeling normal for a while.

Sometimes that’s worth far more than a perfect graph.

“When I don’t have diabetes”

As parents, all we want is to take away our children’s pain. T1D has taught us that sometimes we simply can’t.

There’s the crying during pod changes—which seem to come round every three days far quicker than I’d like—especially when it’s the second change in 12 hours because something has gone wrong.

Then there are the comments that completely catch you off guard.

“When I don’t have diabetes anymore…”

Every time he says it, my heart breaks a little.

Trying to explain to a five-year-old that, for now, he will always have diabetes is one of the hardest conversations we’ve had. Yes, research is moving incredibly quickly and there is so much reason to be hopeful for the future. But today, there isn’t a cure.

The look in his eyes when we explained that is something I don’t think I’ll ever forget.

I think he’s slowly beginning to realise that this isn’t just a phase. This is something he’ll live with every day.

That feels like an awful lot for such little shoulders to carry.

But if the last 10 months have taught us anything, it’s that children are remarkably resilient. T continues to amaze us every single day. He laughs, plays, swims, travels, makes friends, asks for burgers, gets cross about pod changes, and lives life exactly as a five-year-old should.

Diabetes is part of his story, but it will never be the whole story.

L x