Type 1: What my girl would like to say…

Type 1 Diabetes - finding a cure on World Diabetes Day

I wasn’t going to write about World Diabetes Day. This is a family blog. It’s a happy space, where I record the things in our lives that I want us to remember: the holidays, the letters to Father Christmas, the amusing anecdotes about funny toddlers that will make guests at their weddings laugh. It is not a blog about diabetes.

But as I think about my daughter, about all she has had to come to terms with in the 3 months since her diagnosis, I know that I can’t let the occasion pass without some comment. I was going to write a post about a fun weekend in Blackpool today, but you’ll have to wait for that!

What is Type 1 Diabetes?

Learning to live with Type 1 diabetes is a long journey. What I have learned in 3 short months blows my mind. But what’s really astounding is how much my daughter has already got to grips with. The blood testing and injections are a walk in the park. It’s the complex maths, the intricate behaviour of different foods in the body, the sometimes confusing effects of excercise, and what happiness (or temper!) can do to blood sugar levels that is really challenging to understand. And yet she does. And she is only at the beginning.

They say it takes a year before you really learn to manage diabetes. That makes sense. Everything you previously knew about your body is irrelevant. You have to go through every one of your normal experiences, to learn how your own diabetes responds to it. Some people hide for a while, finding home, routine, and their own cooking safer. We are not like that. She is not like that. She will stand for no less than the life she has always led, albeit with a couple more sick days, and a lot more maths!

And so we have travelled abroad, with a doctor’s letter explaining the needles. We have held a swimming party and eaten enormous slices of birthday cake. We have been surfing, stayed up late, dined in restaurants, baked, and licked the spoon. She has been to Brownie Camp – without me! We know what all those things do to her. Next up will be Christmas, and I am absolutely firm that the mince pies, hot chocolate, and gingerbread house of our family tradition will continue as normal. And yes, she will eat a chocolate Santa for breakfast, because that’s what she always does.

When she was diagnosed, she was worried about needles and sugar. I was more concerned with her future health, and how she would cope when she moved away from home. We needn’t have worried. She injects without flinching, eats as much chocolate as the next healthy child, and is already making so many well-thought-out decisions about her diabetes that I have every confidence in her ability to stay healthy without me constantly peering over her shoulder.

But I still worry. Now I worry about how she will let people understand, gently, about her condition. About how she will stand up for herself, politely, when the biscuits are handed round, and she is missed out, through lack of understanding. I worry about her social life; that parents may not want her at parties any more, that my once popular girl will be left out because parents fear the responsibility. That the sleepovers she loves so much will become a thing of the past.

Type 1 diabetes is massively misunderstood. I know, because I misunderstood it. To my shame, I am guilty of advising a diabetic not to eat dessert. I have now stood on both sides of the fence, and here is what I think the world needs to know, when they know a diabetic:

  • Type 1 diabetes is an autoimmune condition. It was unavoidable, and we could not have prevented it.
  • It has nothing to do with diet or exercise.
  • She can eat anything she wants.
  • She can eat anything she wants. I say this twice, because it is the most common misconception we come across. No food is banned for a type one diabetic. She can eat whatever everyone else is eating, but she has to take the right amount of insulin to cover it.
  • It’s all about the carbohydrate. Chocolate will raise her blood sugar, but so will toast. Diabetics have an insulin:carb ratio that tells them exactly how much insulin to take – as long as they know how much carbohydrate they are going to eat.
  • A diabetic will not die in your care. The worst that is likely to happen is a hypo that she can’t deal with on her own. You will make her drink juice, or Coke, and she will be fine.
  • That’s not to say it’s easy. It is hard, really hard. It takes almost all of my time at the moment. Planning, counting carbs, responding to test results. Re-adjusting ratios when something doesn’t work. Not to mention the coaching that a child needs when the unfairness of it all inevitably gets her down. I underestimated diabetes. It is time-consuming, and it changes the rules of the game all the time.

She wants a cure. Oh, she wants a cure so badly. Not to stop the injections, but so that she can just be Maddie. So she can eat without taking a maths test and pricking her finger.  She is Maddie. She is different, but she is the same.

2014-10-24 Type Onesie 001 (510x680)


It is coming, the cure.  The science is there already, and I firmly believe it will come in her lifetime. Sadly, it will not come in her childhood, and that is tough on her. Today is World Diabetes Day, and this is how my daughter motivates herself. By standing up in front of 400 members of her school to explain about Type 1 Diabetes. By convincing her teachers to let all her friends wear a onesie to school to raise money for research. She’s strong, that girl.

To everyone who has donated, let me offload, taken responsibility for her safety, offered her a playdate or party invite, thank you. It means the world.

For more about the research that may lead to a cure, visit JDRF.

19 thoughts on “Type 1: What my girl would like to say…”

  1. I’m so glad you’ve both got such a handle on this. Posts like this are enormously helpful to those of us who don’t know enough to make a difference, thank you. And go GG! X

    • Thanks Anya. I’ve learned that most T1’s get frustrated with people’s perceptions of diabetes. The media doesn’t help. But equally, it doesn’t help to lecture people about it. I try to inform, gently, where I can, but all of us need to be the people our friends first got to know, if we want to keep our friendships. So we’re gradually coming back to the world 🙂

  2. I loved this Helen ‘She is Maddie. She is different, but she is the same’
    I think she’s really quite spectacular, strong, determined & brave- there aren’t enough words to describe how amazing she is (er, convincing her school about the charity onesie day?! Bloody brilliant)
    & D’you know what? I’m sure she’s learnt many of these traits from her very own mama.

  3. What a brilliant girl! It sounds like she has come so far in such a short space of time. Well done to her for getting the school on board for her campaign – it can’t have been easy when it was competing with the might of Children in Need day.
    (And well done to you – she couldn’t be so brilliant without a brilliant, supportive mum behind her.)

  4. I did not know you could eat whatever you wanted with Type 1 Diabetes. Excellent and informative post Helen and it is just wonderful how your daughter has taken control of her injections (I’m not sure I could) and carbs. I imagine you are very proud of her, I am.

    • Thanks Catherine. It’s all about matching the insulin to the carbs, which is easier said than done, and a lot of hard work, but at least it’s less restrictive if you’re willing to pay attention to it x

  5. Oh Helen you must be so proud! What an amazingly strong girl you have there 🙂

    I can’t imagine how tough it must be for her and all of you at times but she is clearly turning it into something positive so well done Maddie xxx

  6. this is so useful to know. I sometimes feel the need to write something similar about ASD because i was SO guilty of misunderstanding it before J’s diagnosis, but l also want to get the balance right about our blog being there for the whole family and I don’t want to focus too much on J’s difficulties. We also try to carry on as ‘normal’ as possible and it sometimes surprises others that we do all the things that we do – but I kind of want to show people that when you get an ASD diagnosis it is not the end of the child you knew but it is the same child and they can go onto achieve their potential no matter what.

    Your daughter is totally awesome and so is your whole family – I am loving the onesies!

    • I’m fast realising that no-one actually has perfection, everyone is dealing with something in their lives, and it’s not always something others can see. But you’re right, it should never stop you trying to achieve your dreams – it’s incredible what some people have overcome to do things most of us would never contemplate. Thanks so much for commenting x

  7. Go Maddie, what a brave young Lady and doing so incredibly well. Its amazing how we cope with these curve balls life throws us isn’t it.
    Helen I know we haven’t met yet, but if diabetes UK are doing the bridge challenge next year I am going to do it, to raise as much awareness and money as I can. Wondered if you fancied coming along too x

  8. Such a great article. My daughter was diagnosed in her early twenties, she was a medical student spending her holidays helping out on a holiday camp for diabetic kids so she tested her blood when they did … and had a nasty surprise. Knowing all the downsides to diabetes didn’t help and it took her a long time to come to terms with it. My son had just got over cancer so I felt I’d done a really bad job for both of them. Silly reaction but there you are.

    Great article!

    • I think it must be really tough Jane to be diagnosed as a young adult. And as a mum you totally feel guilt over everything that doesn’t go well for your children. It’s just horrible. But you do come to terms with it eventually. It never stops being a worry and hard work, and upsetting from time to time, but there’s just no choice but to get on with it is there>? Thanks so much for commenting x


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