Today I have a new interview for the Meet the Parents of Children with Type 1 Diabetes series, this time the interview is with Helen from Actually Mummy. To find out all about the series, pop to the initial Meet the Parents post.
Where do you live?
I live in St Albans, just outside London, with Jason, Maddie – who has type 1 – and her 10-year-old brother Evan.
When was your child diagnosed and how old were they?
Maddie was diagnosed in August 2014, when she was almost 10. She’s 13 now, and has been living with diabetes for nearly 4 years.
What were their symptoms and how did their diagnosis come to happen?
It actually still makes me really sad to think about this. She bounced out of Year 4 on the last day of school and declared it was going to be the “best summer ever.” Of course it wasn’t. It was the worst time in our lives. I knew a bit about diabetes because I’d read my friend Jane’s blog posts about her daughter Molly. So when Maddie started drinking more water than usual, and not being able to go more than an hour in the car without a toilet stop, the alarm bells were ringing.
Then one night she wet the bed and was mortified. I took her into the GP the next day with a wee sample, praying it wasn’t, but it was. I knew it was going to be bad when our GP – not known for compassion – put a hand on my shoulder and said “I’m sorry, it’s a big diagnosis.” We were sent straight to hospital, which was a shock, because she was so well, but they don’t take any chances.
I didn’t even ask what blood tests they were doing, so I don’t know how bad it was, but they didn’t give her insulin till the following morning, when her BG was 20, so I’m guessing there were no significant ketones. I have that to be thankful for. So many kids are in DKA at diagnosis – we were lucky to get there early.
Did you know anything about Type 1 Diabetes before diagnosis?
Just that it wasn’t the kind you get from poor lifestyle habits – though I’ve since learned I was wrong even about that! So many type 2’s are healthy and fit – it sometimes really is just the luck of the draw. The first person I called when we came home from hospital was my neighbour, whose young daughter had been diagnosed a couple of years earlier.
I wanted to apologise for not taking her seriously enough when she told me. I’d brushed it off with ‘at least it’s not life-threatening…” Of course, now I know differently what an enormous diagnosis it is, and I work hard to try to educate people so they don’t make the same mistakes I did back then.
Is your child on an insulin pump or on mdi (multiple daily injections)?
Maddie has the Omnipod insulin pump. It’s tubeless, which was a must for her. She also has the Dexcom G5 continuous glucose monitor, which gives us a reading of her blood sugar levels every 5 minutes, and alarms if she’s going too high or too low for safety. It’s the main reason why she’s doing as well as she is with managing her condition.
What has been the hardest part for you and your child/children?
You’d think it would be the injections, but it’s not. For me, it’s the lack of understanding of what you’re dealing with as a type 1 diabetic. The media, and therefore the public, believe it’s really no big deal – a couple of injections and steer clear of sweets. I also hate the judgement. I met a lovely man who’s had type 1 for 60 years, with none of the big complications you read about, which means he’s doing a really good job with his condition.
He told me how much it hurts when he’s ‘rolling on the floor with a bad hypo’ (which happens to everyone on insulin at times) that people mutter about how he doesn’t manage it very well. I hate that Maddie will grow up with that level of misunderstanding a judgement around her.
I think though that she’d say the worst thing is the relentlessness of it all – the constant carb counting, dose calculations, and background decisions she’s making all the time to try to keep her levels in range. And the failure! No matter how hard you try, it’s impossible to stay in range all the time, and she has hypos and high levels almost every day – that’s her normal now, but it’s hard work.
Between diagnosis and today, is there anything that has gotten easier for both of you?
The general routines of diabetes. All the injections, cannulas, supplies we have to carry everywhere ‘just in case.’ We can both eye a plate of food and know how much insulin it might need, and we’re confident now of our ability to manage exercise. Though it still throws us regular curve balls, what once seemed overwhelming is just part of life now.
Has your child’s school been helpful in terms of Type 1 Diabetes care?
They have, but it took a lot of hard work in the beginning to make them take it seriously enough to support us. We’re lucky in that Maddie has a wonderful form tutor who I can rely on to champion her cause if she’s ever in need of extra support. That’s invaluable.
If you could say one thing to a parent whose child has just been diagnosed with Type 1 Diabetes, what would you say?
It gets better. It feels impossible, but it does. It takes a long time though to get your head round it, and you should allow yourself time to grieve, not expect too much. I was in full on grief for 2 years before I began to come to terms with it, and I know a lot of other parents who would say the same. Also, give your child love, and empathy, let them know you understand, but don’t mollycoddle them.
Maddie once came home from a Brownies campfire evening miserable because she had to choose between a KitKat and an extra injection. I agreed with her that it totally sucked, but I was firm with her, because that’s her reality now. She can choose to feel sorry for herself, or to just do it and get on with her life. It’s a hard lesson, but I firmly believe that because she knows she won’t get pity, she takes a no-nonsense attitude to diabetes that works in her favour.
Is there anything that you would like my readers to know about Type 1 Diabetes?
That it’s not a small thing. It’s a full-time, gruelling, often soul-destroying condition that can be life-threatening, even when you manage it well. Anyone you know who needs insulin to stay alive is battling a daily slog that is as emotionally distressing as it is physical. It’s impossible to understand unless you live with it, but just showing an interest, and asking questions goes down so well with us and we’re always grateful to anyone who takes the time to try to understand, and change their knowledge of the condition.
Considering what pesky beggars they are for getting everywhere, where is the weirdest place you have found a blood testing strip?
In the puppy’s mouth!
I always tell my son that Type 1 is not who he is, it is just a part of our lives we have to deal with. Tell me a random fact about your child, that has nothing to do with Type 1 Diabetes?
Maddie has the most amazing sense of style! Long gone are the days when I used to despair at her teaming thin yellow leggings with her big knickers and crop top! She’s also shaping up to be a pretty accomplished ice skater. Which, you know, keeps the diabetes challenges coming! 😃
Thank you so much for taking part in this series Helen! If anyone else would like to take part in this series, then please do email me at firstname.lastname@example.org – you don’t have to be a blogger to take part, thank you.
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