Diabetes Anniversary: Not Drowning But Waving

A better diabetes anniversary - how it feels three years in

A diabetes anniversary is always a time for reflection. If you’d asked me three years ago how I felt about diabetes, I would probably would have burst into tears before I’d managed to utter more than a sentence. It was devastating. It took me well over two years to even begin to come to terms with it. I remember one morning, about 18 months in, I was just so angry about it all that I actually kicked a dent in our kitchen wall. I screamed in frustration, and spent the rest of the day crying uncontrollably at the unfairness of it all.

Today though, things are different. Today – although if anything, diabetes is even harder to control than it was before, with the onset of puberty hormones and the spontaneous lifestyle of a teenager – today I can put it into perspective. And whilst I could never say I’m glad that diabetes is a part of our lives, I find myself actually grateful for some of the changes it has provoked for our family.

The upside of living with diabetes

Living life to the full on our third diabetes anniversary


Last week I was part of an online conversation in a group of parents who have kept me sane since Maddie was diagnosed with Type 1. It’s a brilliant place; they share advice and experience when the numbers just don’t make sense; they give virtual hugs and eyerolls when the frustration of trying to explain an inexplicable condition kicks in; and they’re there at every hour of the night to hold your hand when you’re dealing with an unexpected stubborn level. They get it. Where it’s particularly evident is when someone new joins, still in that ‘hit by a truck’ place that every parent arrives at after diagnosis.

Marisa, one of the diabetes mums, told a newcomer about her son. He’s 21, and has survived teenage years, alcohol and university. She told us:

“Before Cam was 20 years old he had lived for a year abroad, seen in the New Year watching the fireworks in Hong Kong harbour, backpacked around the Far East, kayaked through the centre of Vilnius, lived with families in France, been on TV several times, debated in parliament, performed for high level dignitaries, camped in the highlands, got into numerous near misses with his diabetes and had to learn to think on his feet. His Hba1c through all of that has not been perfect by any means – it couldn’t be. If I’d insisted on him staying at home and not doing any of the above then his levels might have been perfect – but then he wouldn’t have had all of his adventures, and wouldn’t be the mature and independent young adult he is. Like so much else in life it’s a trade off. What people have to remember is that it’s not about them, it’s about their child and their life, and what they want to do.” *Hba1c is the quarterly blood test that determines how you’re doing, clinically speaking.

The comment was designed both as motivation, and as a warning that being afraid of difficult blood sugars shouldn’t get in the way of living a normal life. And I started to think about the positives that diabetes has brought to our lives:

I’m no longer a control freak

Diabetes has cured my perfectionism. You absolutely cannot be a perfectionist when it comes to blood sugar and insulin. Believe me, I’ve tried. I’ve sat, poring over figures and pump settings till the pencil marks blurred; I’ve tracked glucose levels hour by hour, day after day to see if I can spot the trend that will fix it. I’ve made grand, complicated plans for insulin doses for pizza, chips, and rice, and waited with bated breath, each time feeling like a complete failure when my actions didn’t produce the results we wanted. Diabetes doesn’t follow rules, or patterns. At best it’s like herding sheep; after a lot of tail chasing, and random manoeuvres to grab a stray figure, you will manage to get it all in the right place. Briefly, before it all heads left field, and you have to start all over again.

I’m braver

Why I'm braver on our third diabetes anniversary

My daughter will do it all. She tests me all the time, pushing barriers, not willing to let diabetes stop her doing anything. And I go with it. Before diabetes I was an apron string kind of parent. I thought more about what dangers lay in a proposed activity, than in the fun my kids might have. I fought their battles for them at school, worried about their 5 veg a day, and the minutes of music practice. I stressed about the little traits of their characters, and how they might impact them in adulthood. I had such a huge fear of stranger danger that even in summer I would lock all our bedroom windows before I could sleep, and the thought of Gap years had me wanting to stop the clock.

Now it will most likely be me pushing my kids to backpack through South America, to complete every level of the DoE, or to fundraise for a summer in Tanzania. I still don’t want them to go. Diabetes will be an absolute monster to manage through all of that. But I hate to lose, and I’ve never been a quitter. If diabetes tells me she can’t do something, I will damn well find a way to prove it wrong. I’ve made myself a life of intense stress, I know. But the rewards will be greater than any I had planned for my children before diagnosis.

I don’t take life for granted

I’ve changed my attitude to life so much. I used to assume that most people made it to 80-ish with not too much drama. Diabetes was the start of a big wake up call. Life isn’t like that for everyone, nor is that a prerequisite for happiness. A colleague of mine lost her daughter at 32 to a skydiving accident. She said it was okay because she’d had a happy life, and died doing something she loved. I could not get my head round that at the time, but these days I can totally understand it. You can live in constant fear, or you can take really good care, then live your dreams and just see what happens.

Marisa agreed:

“You have absolutely hit the nail on the head Helen – and what you are getting at is getting past the entirely understandable fear, and truly living, rather than just existing, with diabetes. As parents we mustn’t let our fear stop our children from getting every bit out of life that they can squeeze. You have to make a hideous mental shift as a parent of a child with diabetes – and force yourself to confront the unthinkable – which is your child’s mortality. I’d rather Cameron lived to 60 or 70 with a lifetime packed with memories and adventures, having seen everything this world has to offer, than to 80-90, body intact, with a perfect record of bloods but a sterile life, and no excitement or memories to look back on and keep him warm when he is old and infirm. It’s a quantum shift in thinking for a parent because your overriding instinct is to keep them safe from absolutely everything. And if you are a worrier by nature – diabetes can tip you over the edge.” 

When Maddie was first diagnosed, I couldn’t imagine a weekend away, never mind a holiday abroad. But we’ve pushed ourselves, doing things that make diabetes tricky to manage – long haul flights, skiing, adventure holidays, and extreme activities. And I have no doubt that I will need a lot of wine to make it through her first inter-railing adventure!

She’s amazing

Diabetes anniversary - what we've done in the last 3 years

Of course, it goes without saying that both my kids are amazing. We all think that about our children, don’t we? But my daughter has astounded me over the last three years with the things that she can take on. I honestly believe that without diabetes, her maturity, and ability to manage her situation would be nowhere near what it is right now. Quite aside from her uncanny knack of estimating the carbs in any kind of cake, she can handle herself. Her instincts about people and situations are usually spot on, and she negotiates with the adults in her life so stylishly that I very often don’t even get involved these days. She too has visited Parliament, spoken confidently to Theresa May, delivered whole-school assemblies, AND isn’t as scared of her headteacher as I am! And it’s not just her. Her 10 year old brother – always sensitive to other people’s needs – has become her main champion, and has as good an understanding as anyone of what she is dealing with. I’d trust him to look out for, and after her.

We’re closer than we were before

I was a typical parent, rushing through the parenting ‘tasks’ as I saw them, till I could get some time to myself. My daughter and I were not natural companions – we’re both headstrong, independent and opinionated, and we would often argue. Diabetes required so much of our time to be spent together, and thrust us both into the unknown. She needed me more, and if I’m honest, I needed her too, as I struggled to come to terms with it. We both slowed down as we got to grips with things, and as we chatted together, we got to know each other properly, in a way neither of us had taken the time to do before. It’s lasted, and though medical issues are discussed less frequently these days, I feel like we understand and support each other better than we did before.

So today, three years on, I am grateful. I would gladly give up the nights of trying to fathom rogue blood sugar levels, and the worry about the more serious aspects of what my daughter is living. And I long for the time when she won’t have to stick 10 needles a day into herself just to stay alive and safe. But I love who we have become because diabetes is with us. When it leaves – if a cure is found – it will leave us with such wonderful life lessons. Happy diaversary Maddie x.

On our 3rd diabetes anniversary, I can finally tell you what's good about living with type 1 diabetes

30 thoughts on “Diabetes Anniversary: Not Drowning But Waving”

  1. Oh I love this, and what an amazing Mum you are! I think I would feel exactly the same way at first, one of my best friends sons was diagnosed at two and it broke her but now she feels exactly the same. Your daughter is a true hero.

  2. Happy Anniversary (if that isn’t weird to say?) and I’m so glad you’re in a great place now. You sound like you’re doing a wonderful job and I agree live life to the fullest and try not to worry!

  3. A beautifully written article…I love how close you are to your daughter and how you’re battling this together. This could be a lesson to all of us, to loosen those apron strings a little. I know I’ve got a tendency to be over-protective. You’ve really made me think about that, thank you x

  4. Such a beautifully written post. The bond you and your daughter have is clearly sucha strong one. Glad that your in a better place now. x

  5. My friend was diagnosed with diabetes when we were at primary school, she dealt with it so well and even went on to be a dietitian. It sounds like you’re handling it all really well and you’re so right to focus on the positives, it’s something I try to do every day 🙂

    • I know a few people with it who’ve decided to become doctors or nurses. It makes sense really – you end up knowing so much about the body that it’s actually an obvious choice. Maddie is having none of it though. She says it’s all so boring and annoying, she wouldn’t want to make a career choice out of it 😀

      • Ha ha this made me laugh….after Jack was admiring our consultant’s Rolex at clinic last time i said maybe you’d like to be one…he said ” urgh no it’s boring enough talking about me, let alone other people’s diabetes”

        • Exactly her stance on it. I’d say take the easy choice and go for a career where you know all about it before you even start the course. But yes, I can imagine how irritating it might be to talk about nothing but your medical condition all day!

  6. What an inspiring post! I love your attitude towards the diabetes journey your family is on and what a fantastic champion you are!

  7. What an interesting and inspiring post. It seems that this experience has actually made you rethink and loosen those apron strings.

  8. I read this with tears in my eyes. You and Maddie are such an inspiration, I am not sure I would be as brave as you in the same circumstances. I moan about my own glucose tests but that is nothing to what you go through.
    We do have a similar outlook to parenting though. I lost my sister to a heart attack a few years ago and it give me the push I needed to live life to the full and let my kids do the same. I waved my daughter off to do her Duke of Edinburgh Gold in Gambia when the ebola crisis was happening and I got selfies of her with crocodiles and snakes – she had the time of her life!!

    • Oh gosh Kara how sad! Yes, awful life events do make you take stock and prevent you spending all your time stressing about the little things. Not that ebola was a little thing at all! Well done on handling that so well – not sure I would have! But like you say, you have to let your kids do things x

  9. My best friends daughter was diagnosed at age 3, she is now 14 years old. I have watched her deal with the realities of having a diabetic child. I do not know how you cope, how you manage, I guess you just do but the parents are often forgotten.

    • Yes, people tend to think it’s just a few injections and sensible eating, but it’s so much more than that. When you realise the weight your child is carrying around with them for life, it does feel overwhelming. But you do it because you have to, and eventually it just becomes the norm.

  10. I can imagine how devastated you must have felt when Maddie was first diagnosed. You were totally blindsided and had so much to learn and adapt to. I would have been terrified too, but for you to be able to look back now with such positivity is truly inspiring.

  11. You guys have been on quite a journey with it. I really had no idea how challenging a condition it can be, especially when it comes to the impact it can have on everyone’s freedom

    • Yes, I think people just get on with it because they have to, and it’s boring telling people about it all the time. But it is incredibly demanding and time consuming. Much more than you imagine before you know it.

  12. What a moving post Helen, I remember we started Space In Your Case not long after Maddie’s diagnosis and the conversations we had back then were so raw. It’s amazing to see how positives have come along too, to see humour break through the darkness and how much you have educated everyone else about it too.

  13. Wow, I’m a month into diagnosis of my 2yr old daughter. I wish I could say we’re coping but emotionally we’re all a bit lost still. Practically we’re getting on with it. We have a little boy as well so we have to. But reading something that sums up exactly how I feel (while sobbing!) is really helpful. I think I will save this for all the future moments when I need to let you all that pent up distress you feel. Thank you xxx

    • Bless you Kirstie, 2 years is so so young. And the whole thing is devastating for a very long time. It really is like coming to terms with a big loss – very real grief. You will get there, and come to some level of acceptance eventually. It must be so distressing with one so young. We were lucky in some ways, that Maddie could understand what was happening, and didn’t fight it. Then again, the fact that she understood that this was for life made it really upsetting to watch. You will all come to terms with it eventually, and she will amaze you!

  14. Thank you. I look forward to coming to terms with this. We are almost 6 months in. It’s been the hardest thing for our family to come to terms with out of all the challenges we have faced in life. But one of the beautiful things I have seen is it has taught my son empathy. He empathise with anyone ill now and has written the most beautiful get well cards for a 9 year old. This makes my heart swell and I know he will grow up to be a caring and empathetic individual. All the best. X

    • That’s so lovely. Yes, they do seem to develop a more supportive quality. I suppose it’s natural – they’ve experienced a lot of pain, it’s bound to make them more understanding when others are going through something difficult. Good luck on your journey x


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