When my son was diagnosed with type 1 diabetes back in 2006, we spent three days in the hospital. We learned to do the basics and proved that we could give injections and count carbs. They sent us home, confident we had learned enough to keep our son safe and healthy.
I’m glad they were confident, because I sure wasn’t! I knew I’d mess it up. I knew next to nothing about diabetes, and I had never given a shot before that day in the hospital. I called our endocrinologist every single day for a month! I assumed that one wrong move would do irreparable harm to my child.
With the help of our wonderful care team and, eventually, some mentor diabetes moms, I slowly came to realize that not only were mistakes okay, they were necessary. Messing up made diabetes easier. How? Because mistakes are how I learn.
Fast-forward a few years to social media. From their posts, I realized there are a lot of parents so afraid to make a mistake, or even to let a blood sugar go out of range, that they limit what their child can do. That’s not a way to avoid mistakes, that’s a way to avoid a full and fulfilling life.
Don’t misunderstand. Being the self-appointed “World’s Worst Diabetes Mom” doesn’t mean I don’t take diabetes very seriously. I do. We all have to. Being “The Worst” means having the confidence that your child — and you — are resilient enough to mess up a dose, do an activity that might crash their blood sugar, or try a new food that could send them skyrocketing.
I can’t tell you how many times we’ve walked into a restaurant and heard the “beep beep beep!!!” of an empty pump cartridge. My son has gone very low during sports and really high at sleepovers. I messed up our insulin pump start by forgetting supplies and programmed the pump incorrectly because I misunderstood directions. I’ve even accidentally bolused the inside of my purse instead of my son!
All of those lousy experiences have been terrific, because they help me look at diabetes as more of a long-term science experiment instead of a final exam my son and I need to ace every single day. Working through them, and seeing that he’s just fine, also helps me give him more independence and more confidence.
How can you get there?
First, I hate to tell you, but diabetes numbers aren’t exact. As a mom who weighed and measured out everything from peas to ketchup for the first three months, I was devastated to find that carb counting is not a precise science. Never mind that the body doesn’t react to the same food in the same way all the time.
If you use a continuous glucose monitor (CGM), you probably already know that it doesn’t generally match your meter. You may not realize that your meter isn’t exact either. Next time you check, try it two more times from the same finger. You likely won’t get the same number. That doesn’t mean we should give up or stop using the numbers to treat or dose. But it helped me immensely to know that it was okay to aim for a range of numbers, rather than a bull’s-eye target.
Understand the real risks of diabetes by talking to your health care team, not by reading social media all day long. The online community is incredible when it comes to support and some practical information, such as how to get diabetes gear to stick to skin. Unfortunately, it’s not as helpful for more complex science or personalized medical advice. The drama and rumors tend to get more attention — and are repeated more — than the facts. And no one ever posts, “Normal day here. Nothing exciting going on.”
I once interviewed an endocrinologist who had lived with type 1 diabetes himself for more than 50 years. He said, in his practice, there is one factor that predicts whether a child will grow up to thrive with diabetes. “What is it,” I asked. “Genetics? Diet? Technology?”
He answered, “A loving, supportive family.”
There is no perfect. Let that go. Embrace the love and support and all the mistakes. You and your child will be stronger and happier for it.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.