To the Parents of Children With Diabetes: You Can Do It

I’ve seen a fair few new diabetes diagnoses popping up lately, and a lot of new blogging and tweeting on the subject, from parents who’ve literally just been dunked in the deep end. In my former life as a diabetes-centric blogger I was used to reading diagnosis stories, and tales of all the literal highs and lows of life as a parent to a child with diabetes. There were, and still are, plenty of them out there. What is different for me this time is that these are blogs which I followed, or at the very least was aware of, long before diabetes entered the picture. And something about that fact has really heightened my awareness the sheer smack-upside-your-head-turn-your-world-on-its-axis nature of this kind of diagnosis.

Forgive me. I was three when I was diagnosed. I certainly didn’t have a clue back then and I don’t think I’ve ever appreciated it before in quite the way I suddenly do now, no matter how ridiculous that sounds. I just don’t know what it feels like to go from knowing very little about diabetes to having to integrate it, and all its associated behaviours, in to your life.

What I do know is exactly what living with diabetes means. I know how the specific thirst of a high blood sugar feels. I know what a low feels like, and what the hangover can do to you. I know the fear. I know only too intimately all the bloody frustration. I will never, ever be the person to make one of those ridiculous comments about sugar – or worse – that are all to common. I can tell you that I absolutely understand.

I feel I need to say more, though.

If you are the parent of a child recently diagnosed, or perhaps going through the transitions of puberty, or an adolescent rebellion, I need to say this to you: Diabetes didn’t stop me.

It’s very easy to get bogged down by the minutiae, the day-to-day of blood sugars, boluses and carb counts and not look up, on and ahead. Life is still very much there for the living, and without wishing to trivialise the impact of diabetes, live it you can. Honestly.

Where there is a will, there is a way. Almost everything takes more planning and preparation with diabetes, but I’ve travelled across the globe (alone, at times), gone to University and partied the night away, competed in a variety of sports, lived alone as well as with others. I have a responsible, professional job after years of study and hard work. And most of all I have a wonderful husband and an amazing son. All of it, achieved with – despite, if you like – diabetes. There has been almost nothing that I’ve ever wanted to do thatI have been unable to do because of diabetes.

A diabetes diagnosis changes things, but it doesn’t have to end dreams or goals or the pursuit of a fulfilled life.

I also need to say this to you: It’s a marathon, not a sprint.

Sadly, we have to face the fact that this could well be forever, for this generation, if not for the next. At some point you have to take a step back and look at the bigger picture. Each high blood sugar is not a tragedy in itself. Even a few weeks of high blood sugars is not an automatic passport to complications further down the road. Good control is important, but good control does not mean perfection. I appreciate that there may be an element of luck involved, but if I look back over the last 32 years of diabetes I must have had countless months worth of extreme blood sugars (particularly taking account of that period in time where taking insulin regularly slipped off the bottom of the to-do list, but we won’t go there now) and I’m still kicking. I’ve faced the worst that diabetes has to offer. I’m not proud of my hospital admissions for ketoacidosis, but they’ve happened. I’ve had low blood sugars leading to me passing out and having seizures in public. For the parents of a diabetic child, it’s the stuff of nightmares. I’m not telling you these things to keep you up tonight. And I’m very definitely not suggesting that you don’t try your hardest to avoid them happening. I’m just telling you that I’ve been there and done it – and I’m still here talking about it. Most importantly at all, I’m not some sort of failure because those things occurred. Diabetes, ultimately, is the thing at fault.

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And what you need to remember is that each time you hit the bumps in the road, no matter how bad the numbers seem, they aren’t the only thing that matters. Remember: Marathon; Bigger picture; Don’t obsess over the individual numbers, the single days or even whole weeks. Each time you navigate a storm, you are adding to your metaphorical toolbox – and more importantly your child’s metaphorical toolbox – for the future. Next time you’ll have additional skills to know how to get over those same bumps. Or if you can’t get over them the same way (because diabetes has a nasty habit of throwing curveballs and changing the rules) you, and your child, will have a greater belief that you will get around them eventually.

And having that understanding that you can do it, even if it sometimes takes a while, is the key. It makes an enormous difference.

I need to remind you that you can only do your best. You best is good enough.

Look at me. There have been many times where my best has fallen very far short of perfection, yet I’m still doing it.

And I know that you can do it too.

My words, as always, don’t somehow seem enough. But I see all of you working so bloody hard to keep your kids healthy and safe whilst giving them a normal childhood alongside, where diabetes does not steal all of the focus. And standing here, on the other side, I believe in you.

I really do.

Because you can do it.

You can.

On the Flip Side…

A couple of days on, I’m concerned that my last post may have come across as unnecessarily negative or self indulgent, and that perhaps it requires some balance.

For starters, I’m acutely aware of how many alternative scenarios I could be facing that are infinitely worse than anything I’ve ever experienced or am facing now. It may be a big deal to me in this moment, but in the grand scheme of things, it’s a minor blip.

I’ve spent my entire life refusing to be someone who says “It’s not fair”, because, frankly, that is only stating the obvious. Life is intrinsically unfair.

Perhaps the most difficult part for me is the lack of control. I’m used to working to get what I want and holding no one accountable but myself if I don’t get to where I want to go. And whilst I’ve made changes to my lifestyle and devoted hours to monitoring and recording my “fertile signs”, doing everything in my power to optimise our chances of successful conception, ultimately there is only so much that I can do. At the end of the day, much of it is out of my hands and comes down to chance, or to good old-fashioned luck. It’s hard for me to get my head around that.

I feel sometimes like my body is saying “no” to me, which is not something I find easy to accept. As someone who has met a lot of narrow minded prejudice in my life, I’ve learned always to be clear with people that they shouldn’t tell me not to do something that I really want to do. Not to tell me “no” based on their own assumptions of what they could, or would, do if they were me or in my position. The greater the barriers people raise, the higher I will jump, or the further I will go, to get around them. I  generally set a limit on my limitations rather than letting my limitations set a limit on what I can achieve. I can assure you that without this attitude I wouldn’t be where I am now, doing the job that I do, living, and having lived, the life that I do.

But none of this works when then problem lies in the way that your body works. Or doesn’t. I can’t go any further or work any harder, and my passivity is translating in to negativity.

On the flip side, at least I’m used to things not really working how they should. I’m used to unexpected twists to the journey and I’m used to getting bad news about my health. Even a commonplace broken leg for me had to be complicated by the simultaneous rupture of my achilles tendon which led to three surgeries and a total of more than six months in plaster. I never do things by halves, and perhaps my biggest mistake is allowing myself to be surprised that this isn’t going smoothly.

The positive side of all of this is that I’m built to cope. If I can’t direct my strength and determination into actually making it happen myself, at least I can direct it into re-setting my expectations and coping with the journey.

And not giving up.

Flowers on the piano