L-R: Dan, Chloe, Michelle and Jack Hayes. Photo credit: WestPix
Featuring in the Sunday Times last weekend to mark the Family Centre’s fifth birthday, the Hayes family knows all about life with type 1 diabetes. Michelle and Dan’s son Jack was diagnosed with type 1 diabetes at just 10 months in 2015. This year, their daughter Chloe was also diagnosed at 16 months.
Jack, now age 6, was one of the first children to attend the Type 1 Diabetes Family Centre when we opened in 2015, and his mum and dad shared his story on Channel 7's Today Tonight when the Family Centre launched. Now, both Jack and his sister Chloe attend the Family Centre’s playgroup and will be connected, supported and inspired by Family Centre’s services and community throughout their lives.
Jack, above, at the Family Centre in 2015, and below with his sister Chloe this month
Michelle describes life with two children with type 1 diabetes as ‘relentless’. She says “I don’t know what freedom is. I carry three phones with me, because Jack and Chloe’s glucose levels are sent from their sensors to smartphones, and I’m constantly watching them to check they are safe.
We can’t be spontaneous. I can’t just drop them off at a playdate or drop Jack at school – we have to stay close by, ensure Jack’s teachers are fully trained, and always manage his food, activity levels and insulin in the background.
I have a stream of reminders in my phone that alarm through the afternoons and evenings so that I can make sure Jack and Chloe eat and take insulin at right times to set them up for a safe night. If our routine changes just a little bit, for example if they run around and we have dinner a bit later than usual, one or both of them will crash at some point in the night and we will be up managing it.”
Both Jack and Chloe wear insulin pumps that infuse insulin into their bodies around-the-clock. They also wear sensors on their arms to help detect their glucose levels.
“Chloe sees her brother do everything he has to do with his diabetes, like give himself insulin every time he eats and test his blood glucose levels by pricking his fingers, and she follows him. It’s normal for her.
It’s hard to see how type 1 diabetes affects parents and families. The lack of sleep and the constant strain of managing it can really impact relationships. More than anything, parents of kids with type 1 diabetes need strong community support.
The Family Centre is our home away from home. It’s so positive and supportive. From the very first day we went in to the Family Centre, before it had even officially opened and only a few months after Jack’s diagnosis, the Family Centre has helped our family in so many ways.
Through the Family Centre, I have people in my life who understand what we go through – I have constant support and a strong sense of community, where everyone is willing to help me. My kids have a safe environment where type 1 is normal for them, and they can see other kids wearing medical devices, having blood tests and insulin injections. They also see adults living with type 1 who are fit, healthy, strong and positive role models for them, and that’s so important.
When Jack was diagnosed I thought life was over. I now know that my kids can achieve anything despite diabetes, and the Family Centre has been a vital part of that.”
Michelle's top tips for managing life with type 1:
Take a food-first approach: We spend a lot of time adjusting insulin, but working with food is just as crucial. Learn all you can about carbs, fat and protein and how they impact blood glucose levels – knowledge of food is a powerful advantage that can improve diabetes management so much.
Embrace the technology: When Jack was diagnosed, it hurt to see the sensors and medical devices on his little body – with Chloe, I didn’t think twice about getting her onto the technology because it helps a lot.
Choose you media wisely: There are so many negative and sad stories out there about type 1, so take control of your newsfeed. Follow pages and join online communities that are positive and supportive, and delete the rest.
Don’t expect people to understand: When Jack was diagnosed, I felt angry towards friends and family when they didn’t get it. But now I accept that diabetes is just so complicated, it’s almost impossible to understand unless you live with it. My relationships with others are better for it.
Take charge: Use your data, learn as much as you can, and trust your instincts. If what you’re doing doesn’t work, don’t accept it and stay stuck - try something different.