Adapting to a different way of life - young children and diabetes: Libby's story

Jayne

Everyone in the family had had a bit of a cold so I assumed that’s what was wrong with Libby. When she’s unwell she always pushes through it and will still be up at 6 am playing with her Barbies. But this time she wasn’t really picking up.

I’m not one to go straight to the doctors but I mentioned to my mum that she’d been really thirsty and she said it could be a sign of diabetes, which I shrugged off as I didn’t have a clue what that was. But I googled the symptoms and thought I ought to get her checked.

Hospital

The morning I took her to the doctors, I thought she looked really thin. She had also been really lethargic. I took a urine sample to the doctor who did a test there and then. She said Libby had a lot of sugar in her wee and sent us straight off to A&E. And that's where we got the diagnosis.

Libby was injected with insulin there and then and we were moved onto a ward, where we ended up staying for four nights.

I was heartbroken. I didn’t sleep a wink that night. The next day we saw the dietician and then the nurses came in and showed us what we needed to do with the needles. I remember crying my eyes out and saying, “I can’t do this.” The nurse told me to go home and get some rest and then come back.

“We didn't know what diabetes was. So it was doing research – finding out everything about it. Everything about our daily lives got flipped upside down.”  – Mike

Mike

It’s really emotional for us and still is. It’s been 18 months and it’s still quite fresh for us.

Jayne

Libby was coming to an age where she was becoming really independent, and she was quite old headed anyway. I would be happy for her to go to the fridge and help herself to a snack but now I don’t feel like she can do that. I felt like her independence was taken away a bit.

I was so excited about Libby starting school but then that changed. I couldn’t just drop her off at school, I was worried about leaving her with anyone. There was no option of breakfast club and after school clubs, as nobody would be trained to look after her.

When Libby started school, I couldn’t go and meet the staff in advance, due to Covid. On her first day I had to go in an hour early with her and talk to her teachers. She had to listen to worst-case scenarios, which I really didn’t like.

She really wanted school dinners, but they had no idea how they were going to calculate the carbs. But her reception teacher has been amazing and made me feel at ease. Libby loves school and feel safe with them and they look after her.

Jayne

At first, Libby cried every time we came at her with a needle to test her blood sugars or inject her insulin, her but then she just accepted it. She didn’t get the Freestyle Libre for months, so she would groan and say “oh not again” when we needed to inject her. That would make it hard.

She’s a lot more aware now that we've got the technology and that makes things a lot easier for her. Obviously now in school she knows she’s the only one that wears a pump and the only one that needs her insulin before dinner. But I don’t think she really knows the dangers of high and low blood sugar. And it’s not something I want to discuss with her until she’s old enough to understand.

“We are like Libby's pancreas now – we need to give her her insulin. You need it for everything: every carb you have in the day.” – Mike

Jayne

We don’t really do much without the children because it’s so much easier if they’re with us, especially Libby. But there’s nothing she can’t do. For me it was nice going back to work and having a different focus to diabetes. But whenever we’re at work we’ve both got our phones on. 

There have been a couple of times when Libby’s been in school and needs a pump change because it’s failed or hurting her. And school’s only a couple of minutes away so I’ll go straight there and change it."

"At night if Libby’s blood sugars are on the low side, we’ll have to wake her up and give her a glucose tablet. Along with having a one-year-old, we don’t always get much sleep." – Mike

Mike

Other family members were pretty worried after the diagnosis. I don’t think we trusted anyone to look after Libby at first. We still have a bit of that. It's hard enough for us to learn how to look after Libby’s diabetes so we don't expect grandparents to know exactly what to do. Quite a few times we’re called on for advice if her blood sugar is too low or too high.” 

Jayne

People tell you you’re strong, but you don’t think you are. I was heartbroken. I would look at her when she was asleep and think I’ve lost her and who she was. With time it got easier and now my outlook is changing.

I thought I’d never get my little girl back, but she’s here and diabetes is part of our life now. We manage it, whilst she also enjoys her childhood.

"Libby is thriving. She is happy and well looked after at school. She attends gymnastics and swimming, things I thought she would never do with ease." — Jayne 

Everything just takes that extra planning. It’s not easy, I wish it didn’t exist, but as a family, we are miles away from those newly diagnosed days. Technology is forever improving, and I know Libby is going to be ok.