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.
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.