1. What is your connection to diabetes?
My middle son was diagnosed with Type 1 diabetes almost 2 years ago and celebrated his 13th birthday in hospital. We had noticed he was thirsty, tired and was going to the toilet a lot. Having seen a colleague’s child diagnosed, I was familiar with the symptoms and got him to the doctor quickly. I’ll never forget the drive home from the hospital: very reminiscent of bringing your baby home for the first time: wondering if you are up to the job and if you can really do it!
2. What is the most challenging part of having a loved one with diabetes?
Not allowing Type 1 diabetes to define my son, me or my family. I felt swallowed whole by this disease when my son was first diagnosed but reminding myself that it’s not me who has diabetes and using the years I have with my son, before he leaves home, to help him to learn to manage it as best he can has become my focus.
Allowing my son to be a normal teenager is really important. I do not expect perfection but I do expect honesty. If Blood Glucose levels have gone crazy, we look back over the day and try to figure out what may have caused it. I never, ever blame. So far this has worked well.
Not letting diabetes dictate what you do is also a challenge. Your instinct on diagnosis is to batten down the hatches and huddle together. I’m so thankful for the advice of our educator to fit diabetes into our lives and not vice versa. My son has played several sports to a high level, has sleepovers, goes on school camps and makes the most of life. As a family, we are really busy. We have camped, and travelled overseas. Next year my son and husband will go on a club rugby trip to Fiji.
Not letting diabetes overtake your normal parenting decisions can be hard too. Teenagers should and must push boundaries and take risks and then learn from the consequences. Even with Type 1 diabetes, and all the complications it brings, teenagers thrive knowing there are rules. We have all the usual situations in our house with the three boys. None of us are perfect.
Realising that you can follow all the diabetes rules and it still can go pear shaped, was a big learning curve. Hormones, stress, sport and many other factors can swing in from left of field and knock everything out of whack. Keeping calm and working with your team to try to figure out the way ahead is about all you can do.
3. Has diabetes coming into your lives changed your family dynamic?
I’d be lying if I said it hasn’t at times. It’s the first thing that comes into my head most mornings and the last thing I think of at night. It follows us around in what we do: sometimes it’s like a stroppy toddler, demanding and moody but at other times we almost forget it’s there.
In some ways, I think we are better people. I notice that we don’t stress the small stuff any more. I’ve always tried to have the approach of looking at any problems and then thinking of how we can fix them: friendship issues, problems at school. These things can generally be fixed, unlike a broken pancreas!
I really believe too that having someone in your life with a chronic illness makes you look at everyone else differently: you tend to look a bit deeper and see past the obvious. I try to be a kinder person since my son’s diagnosis and I see this too in how the rest of my family interacts with other people.
4. Have you adjusted the way you cook for the family at all?
We have access to a great dietitian who told me not to rush out and buy all the diabetes cookbooks. I ignored her, bought them and have hardly looked at them! We basically eat the same, but a healthier version. I bake and make lots of snacks and have found I can cut out so much of the sugar but cakes and biscuits still taste great.
My son has grown 10 cms in less than a year so he and his two,very tall, brothers take a lot of filling! I try to stock the cupboards with healthy options and we talk about how foods can be low or high GI and the impact of that.
In amongst all this, I am very mindful that my son is a normal teenager. There are times when he goes out with his friends to hang out or play sport and I don’t see him for the whole day. He manages really well and eats just like every other teenage boy on those days.
5. What is the best advice you would give to the family of a newly diagnosed person?
Be gentle on yourself and take it easy. Find a couple of people you can talk to and confide in. I’ve got less friends than I had but those I have were there for me through the early days and now I feel lucky, as I know who I can count on.
Avoid the people who like to tell you scary stories. Sometimes people have no filter between their brain and their mouth. I try not to blame them but I do not seek out their company.
Don’t get too excited every time a cure is announced. Staying positive for the future is important but I’ve lost count of how many cures have been announced in the last two years.
Exercise is a great stress reliever. I go for walks a few days a week and find I feel so much better.
Be pro-active in getting your child’s school to do the right thing. I was afraid of being a ‘helicopter parent’ initially but now I am much more direct. It only takes one scary incident and you find your inner strength. Don’t mess with the mum of a child with Type 1 diabetes!
6. How has the Internet helped you?
I avoided the internet for most of the first year as there are so many scary stories out there. Once I had more of an understanding of how my son was doing and the basics of diabetes management, I jumped in again and found I was more drawn to blogs and more recently to twitter.
I made the decision to start my own blog in May 2015. It’s my therapy as, in my day to day life, I don’t talk about diabetes very much at all. I know there are people in the Diabetes Online Community who get what I’m saying and I get a lot of information and even a few laughs from this lovely group of individuals. I feel like I have found my tribe.