If you’re trekking through the jungle that is parenting a child with diabetes, you’re not alone. In the spirit of caregivers walking this path together, Charlotte radio host Stacey Simms is here as a guest columnist. Simms shares the story of her son below.
Our son Benny was just 23 months old when we found out why he was sick, cranky, thirsty and losing weight. He was diagnosed with Type 1 diabetes. That was a very scary time, but a few days after we began treatment, I had my happy toddler back. It was just the beginning, though, as we were off and running on a lifetime of diabetes management.
My family tries to look on the positive side of things, but the truth is, diabetes stinks. It affects everything Benny does – eating, playing, school, hanging out with friends, birthday parties, sleep. You name it, diabetes wants to muck it up.
Benny, now a first-grader, started on insulin shots, getting up to seven every day. Six months after his diagnosis, we switched to an insulin pump that he wears 24/7. It replaces shots, but it’s not automatic – and it’s not close to a cure. He still must check his blood sugar by pricking his finger six to eight times a day. We usually check him once overnight, as he sleeps. Changing the pump’s connection to his body is like getting a big shot, and we do that every three days.
If you do the math, it means he’s had about 560 inset changes and 13,000 finger pokes so far. Unless something changes, those numbers will keep climbing for the rest of his life.
We also must weigh, measure and know the nutritional information for all of Benny’s food and use the pump to give him precise amounts of insulin for everything he eats. Even with all our efforts, Benny can experience dangerously high and low blood sugar levels. He has a much higher chance of health complications later in life than someone without diabetes, and there’s no way to sugarcoat the worst part: Without insulin, Type 1 diabetes is deadly.
But there is good news. The technology to treat diabetes keeps getting better and better. Benny may soon start using a continuous glucose monitor, which could mean fewer blood sugar checks. Researchers are testing the artificial pancreas, which would give insulin automatically based on real-time changes in blood sugar. In basic terms it would be a pump and a meter, communicating with each other, in one device. And then there’s the work toward a cure.
Of course, all of this progress takes money and support. Walks for the Juvenile Diabetes Research Foundation are coming up. We have a family team – Benny’s Brigade – but I’m also trying something else this year. In addition to raising money for better treatments and a cure, I’d like more people to have a better understanding of diabetes.
I understand that most people don’t really know the difference between Type 1 and Type 2 diabetes, or have any idea what it takes to manage this condition every hour of every day. I didn’t when Benny was diagnosed. But we all need to know. We’re on the cusp of a diabetes epidemic – someone in your family, one of your friends or co-workers probably has Type 2 diabetes or pre-diabetes. We all need more education about this issue.
Before the Charlotte JDRF Walk on April 21, Simms plans to launch “Tweet or Feet,” a social media campaign to spread the word about diabetes and raise more money for juvenile diabetes research. To walk at a JDRF event near you, sign up through the site at www2.jdrf.org.
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