Parenting: The truth about diabetes

Maddie (1)

Today is a difficult day. Today I have mixed emotions. On this day last year I took my nine-year-old daughter to the GP, expecting to come home with a prescription for antibiotics. Instead, we were sent straight to hospital and admitted for training in how to manage type 1 diabetes, and life as we knew it was over.

I asked her how she wanted to mark the anniversary of her diagnosis; if she wanted to just forget about it, or if she’d like to celebrate how far she has come since that awful day. She saw it as an excuse to have fun. She wanted to do normal girl stuff, with added treats. So she’s having a sleepover: a couple of good friends, a stuffed crust pizza (god help me surfing the sugar waves on that through the night!), and a movie.

She’s not into the symbolism of the whole thing. For my part though, I wanted to show her quite how impressed I am by her attitude to it all. How knocked-out I am by her determination to not only push through this, but to make her life even better. How bowled-over we all are by her smile. So this picture now sits in a frame by her bed. It’s a marker of how far she has come, and how much she is loved, and respected.

I have spent most of my time this year learning about diabetes management, and coping with the grief of such a diagnosis. If I’d known, when we began this journey, quite how difficult it all is, I’m not sure I could have even begun. But I couldn’t have known. The media is partly to blame, offering untruths and misconceptions that people – myself included – come to believe as fact. But people with diabetes also make light of the relentless daily management they undertake to keep themselves alive and well, because they don’t want others to treat them differently, or judge them.

A while ago, I posted a diary on Facebook of a day in our lives with diabetes. It was a really good day, as it turned out, with pretty good blood glucose results. We have days that are much more difficult to manage, on a regular basis. But the response I got was phenomenal. People read, shared, and commented about how little they had known, and how much they had assumed. They thanked me for sharing, and for educating them about a condition that is becoming alarmingly more common, but no less life-threatening.

And so I decided that my route along this path would change direction. There are incredible fundraisers, but I am not one of them. No, my goal will be to educate, to raise awareness, and to help others understand, so that those with diabetes can feel supported and understood.

Thank you for reading. Thank you for trying to understand. Thank you for sharing, if you can. Thank you for educating, and for being educated. Thank you for learning and sharing the warning symptoms, so that diagnoses don’t have to be fatal. We were lucky. Today, my beautiful daughter gets on with the business of being ten, with her friends. She continues to smile, and show diabetes that she’s not giving in.

I do have a fundraising page for JDRF, the Type 1 Diabetes charity working for a cure. If you’re feeling generous, I will be running a half marathon in October, and Maddie will be orchestrating a ‘Type Onesie” day at school to raise money – thank you so much for all your support.

20 thoughts on “Parenting: The truth about diabetes”

  1. Ah you lovely lovely mother Helen. Even from looking in from the outside I can see what a dramatic shift this gave your lives. The initial shock, upset, struggle to grasp control back and get to grips with it, the triumphs and challenges and the steely determination and positivity that resulted.
    As one of those people that ‘doesn’t ask much about it because I don’t totally understand it’ and the whole ‘not wanting to say something stupid’ I love the move to raise awareness.
    Love to you and yours x

    Reply
    • Thanks Annie. I love when people ask stupid questions! It means they care, and I enjoy telling people about it. Please never feel you can’t ask. I do understand that reluctance, I was the same myself before this, but it makes all the difference when you’re given an opportunity to talk about it and inform people. It feels empowering, in a life that no longer has a lot of empowerment in it. Stupid questions are lovely. It’s stupid assumptions that really make life more difficult for people with diabetes xx

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  2. Congratulations on making it through a year so well and with so many smiles. Each day is an achievement to be proud of. And honestly, you are all doing a fab job. The numbers in your posts look really fab, especially for a pre-teen with all the activity, hormones etc. The beauty of all the tools that we have now like pumps and CGMs is that they really do allow quite a lot of micromanagement, but the downside is that you can easily get data overload and get bogged down, so remember to be kind to yourselves too. I can’t really imagine what doing it all for someone else, without the benefit of it being your own body that you’re adjusting for is like, so I really do take my hats off to all you type 1 parents out there.

    (One tip re the post-breakfast spike – have you heard of super bolusing? Basically add the upcoming basal insulin for the next 1-2 hours depending on sensitivity to the bolus and then set a temp basal for that time. It’s one of the best tools I’ve found to smooth those spikes.)

    Reply
    • Thanks so much for your words Caro, it means a lot. I need to find a way to back off the numbers occasionally, but it’s not easy to do when I know there are patterns that aren’t working.

      I’m desperate to try a superbolus, but basically she needs no basal insulin at all after breakfast until lunchtime! Benefits of being small, and still in honeymoon I guess. I’m looking forward to that day though 🙂

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  3. All your posts really really helped me as I found myself floundering when I was told about the GD and I had no clue where to start. I didn’t make the connection with carbs instantly, I guess, like most people. I don’t tend to get it right all the time as it feels like one never ending journey of discovery and of course there are those days where you think you’ve done everything right and *something* knocks it all out and yin feel so frustrated. Well done to you both on this year. I hope she goes from strength to strength with it and one day it’s all just “normal” xx

    Reply
    • Yes to all of that! You can work your socks off, and get all the maths right, and it still goes wrong. You’re right, people don’t think about potatoes and bread as causing a problem, but they do exactly the same job as sugar. Congratulations to you for everything you do to keep yourself and your baby healthy xx

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  4. So proud of you both. I know how hard you work & how frustrating it is when it doesn’t work. Your determination and resilience is quite extraordinary. Love you both xx.

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    • Thing is, I’d like to give up, but that’s not an option. It’s life, death, and the future. I will do it because I’m her mum. I just hope she stays motivated to do it for herself when it’s no longer my responsibility.

      And Maddie, if you read this in years to come, and you’re not taking care of yourself, listen to your mum: I know it’s a pain in the neck; I know it’s exhausting; I know you try so so hard, and it doesn’t work, and I know that that makes you feel like giving up. Never give up. Sometimes life is hard. For you it will be harder than it is for most. But I know you; you are tough, you are determined, you are brave, and you are so so smart. When it feels like diabetes has won, take a day or two to feel sorry for yourself. Then get back up and kick its ass. If it doesn’t respond, kick it some more until it whimpers in a corner, if only for a while. Because I can tell you this from experience: even on your blackest days, even when those days last for months, there is always something coming that is better – there is always a turn of events that will make you glad you persevered. And there is always someone who loves you, who needs you to stay healthy and strong. I love you xxx

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  5. You have both been on an incredible journey over the last year. You are proud of how far she’s come and that she’s still smiling, but you should be immensely proud of yourself too. She couldn’t have done it without you. And not only have you supported her through diabetes, and will continue to support her for as long as she needs you to, you’ve educated an awful lot of people about it!

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  6. Gosh Helen, that’s such an eye opener. I actually trained as a nurse when I was 18 and came across a number of people newly diagnosed and I would help teach them how to take their blood sugar levels. But even I didn’t realise just how intense it is to constantly calculate, review and record all the changes you need to manage Diabetes. I thought you just test your levels and if it’s too low eat some sugar, too high and you lay off the snacks and somewhere along the line you need insulin to level it out…shows you how good a nurse I was, luckily I became an accountant instead.
    In all seriousness my hat goes off to every person living and learning to live with this condition and my heart goes out to the parents and families who are waking up each night to check on them xx

    Reply
    • Ah the only people who really get it are the Diabetes Specialist Nurses, because they see so many people dealing with it, so don’t be too hard on yourself. And even they can’t really understand the full impact it has on your life unless they live with it themselves. Lots of them do though, actually – it is so all-consuming, and you learn so much, that you might as well put all that effort to good use and earn some money from it! I’ve been banned from retraining though, and she thinks it’s too boring. Still planning to be a fashion designer 🙂

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  7. Congratulations on getting through the first year… it must have been an incredible journey for you and your daughter. The fact that she’s still smiling proves what an amazing mum you are. Keep going… it’s all you can do x

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  8. Bless you Helen and your determination to support you beloved daughter you are an inspiring mum and I know how hard this has all been for you. I wish you continued strength and much love

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  9. Helen you have come so far, I cant believe it is a year ago but it all starts to click doesn’t it? Although Jack has grown which does make thing hard for a while as you know, I cant wait to see you at the London Bridge Challenge and share a glass of wine to celebrate how well us mums cope with the help of our amazing children and families x

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