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When my son Joseph was diagnosed four years ago with Type 1 diabetes, in some ways it was a relief. My gut knew something was wrong with him, just not what it was. But obviously having a child with a chronic illness shook our family's world. Joseph was amazing. As a toddler, he was very resistant to change. As a child facing a life-changing diagnosis, he completely accepted everything from day one, and just got on with it. No tantrums and no pity parties. In that, we were and are very lucky indeed.
The disease can overwhelm and take over your world if you let it.
My husband and I realized very early on that we would have to think carefully about what sorts of parents and carers we wanted to be, and what we wanted for our son. The disease can overwhelm and take over your world if you let it. Type 1 diabetes requires constant monitoring and decisions, every single day. So, we made conscious choices about how we would try to approach the big and small issues we deal with, to build not only his resilience, but ours, too.
+ We decided he would be a boy with Type 1 diabetes, not a diabetic. It was something important about him, but it would not define or limit him.
+ We would acknowledge to him that he had it tough, but not allow him to dwell on it. Pity won't help him long-term.
+ We were a team. All of us had to pull together. Even his little sister, who sometimes had to wait to eat because Joseph was having a hypo and took priority. We would share the knowledge of how to look after him with our friends and his, so they were part of our team and could help keep him safe.
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+ We would not tie ourselves in knots to get perfect blood sugars all the time, or lose the plot when things went badly. We would do our best, and tomorrow get up and do the same.
+ We would not be helicopter parents. We would foster and facilitate his independence. As parents of a nine year old, this was realistic. If he'd been a baby or a younger child, this would have been much harder.
+ We would roll with the punches and try not to freak out when he occasionally needs to be hospitalized. If we are calm, he is calm.
+ We would hand over control when he was ready, not when we'd like to. We're still working on this one, and it's tough to figure out. We'd like him to be more responsible and diligent about testing and giving insulin without us reminding him, but we accept that he needs a childhood and a rest from Type 1 diabetes, too.
Not long after the diagnosis, one of our friends commented that if what doesn't kill you makes you stronger, Joseph will be very strong as an adult. It was a good reminder that, as tough as the journey has been for him, the disease is also making him stronger. He's an incredible kid, and it's our job to help him cope and be as resilient as possible.
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