The truth about caring for a child with type 1 diabetes

One mum shares what having an eight-year-old son living with type 1 diabetes is really like – for her, for him and for the whole family. 

Australia is ranked among the top 10 countries in the world for the prevalence of type 1 diabetes in children, making it one of the country’s most common long-term childhood conditions. And for every child who’s diagnosed, there’s a family that’s affected, too. Jennifer Brown’s son, eight-year-old Cory, was diagnosed in 2012. Here, she shares the challenges, the choices and the clarity she’s discovered, along the way. 

“Cory was three when we found out he [had type 1] diabetes. Looking back, he had a lot of the classic symptoms – thirst, weight loss and he’d started wetting the bed again. But when you’re living it, it’s not always obvious. 
We were away from home, staying with my mum in Kianga on the NSW south coast when he started feeling really ill. I took him to hospital and his blood sugar [glucose] levels and ketones were through the roof. They said he should have been in a diabetic coma. We were taken by ambulance to a hospital in Canberra, leaving my husband Gerard with Cory’s older brother Kurt, behind in Kianga. 
We stayed in hospital for a week, and the pressure I felt was enormous. I didn’t know much about diabetes so trying to get up to speed was like cramming for the HSC in two days. Not to mention learning how to do the [insulin] injections! When we left hospital, the six-hour drive back to our home in Gulgong was stressful. I was on my own with Cory, and was worried I’d get his insulin [dose] wrong or he’d have a [blood glucose] low – I had to stop every half an hour because I felt like throwing up.
Family playing together

A learning curve

The last five years have been a steep learning curve, and we’re still learning. Right from the start, Cory took it in his stride and we’ve tried not to wrap him in cotton wool. Still, there are things that he’s had to miss out on. Sleepovers with friends are out, and even our extended family aren’t comfortable having him to stay, which I understand – it’s a big responsibility. I still worry about him having a ‘hypo’ [hypoglycaemia, when blood glucose levels drop too low] in the middle of the night and slipping into a coma. Sometimes when he’s in a really deep sleep, I’ll poke him just to make sure he’s okay. That fear never really goes away. 

I do my best to encourage healthy eating habits because as well as keeping his diabetes well managed, I want to do what I can to help him avoid long-term complications. Still, he’s only eight! 

He has the occasional junk food meal and lollies, because I never want him to feel like he’s the odd one out. I sometimes feel like I’m being judged for those decisions. People who know he [has] diabetes might question why I let him eat this or that, and that’s hard. But I have to trust that I’m his mum, so I know what’s best for him. 

I’ve also had to learn to let go. It’s impossible to be perfect and there are times when I don’t get his insulin [dose] exactly right or do things perfectly. Our local diabetes clinic has been fantastic. My contacts there have helped me realise that even when you do things perfectly, things can sometimes go wrong, so there’s no point beating yourself up. There’s only so much you can control.

Team effort

I’ve also learned to let my husband in. Because it was just me and Cory during that first week in hospital when he was three, I started to think that I had to be with him at all times and that no one could look after him as well me. It was a big weight to carry. Now I know Gerard knows just as much about looking after Cory as I do, so we’re back to being a team. 

Throughout it all, I’ve also been very aware of the impact all this has had on Kurt, too. He’s five years older than Cory and I never want him to feel left out or pushed to the side. Inevitably, there are times where Cory needs more of my care and attention, but we’ve tried to include Kurt in that too. I don’t want him to feel resentful or jealous. 

Am I worried about the next phase, and what being a parent of a teenager living with type 1 diabetes will be like? Yes! There will be new, different challenges but I know that some things will become easier, too. It’s a balancing act. At the end of the day I think if we, as a family, have more good days than bad, then we’re on the right track. And that’s all you can hope for.” 
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