It didn’t take long after my son was diagnosed for someone to tell us, “Kid first, diabetes second.” Benny was diagnosed in 2006, but that phrase has been around a long time in the diabetes parenting community.
I get it. We shouldn’t take away all the things that make childhood fun and special, because of a diagnoses of T1D. We also don’t want diabetes to be the first thing people think about when they consider our children and we don’t want diabetes to dictate every decision we make.
For some people, kid first diabetes second also means letting them have a giant sundae or go to a pizza party, although it doesn’t have to be about food. I said it to myself when I let my son go to non-diabetes sleep away camp for two weeks when he was 8. And I said it again when we continued to go for a month every year after that.
But the more I think about it, more I think that phrase misses the mark. Kid first diabetes second isn’t right. It separates the diabetes from the kid. Which is impossible to do. Or – maybe its not impossible – but it doesn’t sit right with me. Here’s why. It implies that you’re sort of cheating on diabetes. We’re going to put diabetes aside (put it second) so we can do this other thing that every child should just be able to do (put the kid first).
What we’re saying is that kids with diabetes shouldn’t really be able to do that; we’re allowing it in this one instance because it’s fun and, at this time and place, we’re focusing on the fun experience of being a child.
It’s as though we’re saying diabetes can’t be part of a real childhood. It can’t be part of a good, fun, wonderful childhood Take it one step further and you’re implying that diabetes can’t be part of a good, fun, wonderful child or ultimately, a person. Sounds dramatic but I don’t think it is.
Looking at this a slightly different way, let’s use the analogy of The Incredible Hulk. No, really! I talk about this just a bit in my book The World’s Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes.
Hear the rest of the story in this week’s mini episode of Diabetes Connections or read the transcript here.
Highs and lows are part of diabetes so they’re part of him. If Benny is able to embrace the side of him that he sometimes wants to reject, he’ll be that much stronger.
So when I think about kid first, diabetes second, I’m going to make the effort to change it to, simply, kid with diabetes.
Birthday cake? Yes! That’s life with diabetes. Sleepover? Sure, that’s a kid with diabetes. Soccer practice without me there? Same thing.
I think if we treat these events and foods like we’re somehow “cheating” on diabetes or somehow separate from it, it sends the wrong message. Consider that most of us without diabetes have a treat day or a cheat day. I’m not eating birthday cake every day but I sure am going to have it at the next party I go to. Knowing that, do I then have to say “woman first, birthday part attendee second?” Or maybe “mom first, mom who really needs to eat more salad and fewer desserts second?”
And it’s not always about food. As I’ve mentioned, milestones and events are relevant here too. Again, if we’re saying kid first, diabetes second about a trip with the grandparents, we’re really telling our family that kids with diabetes shouldn’t be able to do that. We’re only allowing it because it’s fun and it’s about being a kid.
It’s not easy to change our language about diabetes. But words matter. How we talk about diabetes matters. Our children are listening even when we think we’re being careful.
What do you think?
Remember I’m The World’s Worst Diabetes Mom, so I won’t be surprised if you disagree!
learn more at www.diabetes-connections.com
I was diagnosed at 17 so seemingly my parents never had to make this choice. Except, 3 weeks after I got out of the hospital I went backpacking for a month in rural Northern New Mexico and Southern Colorado. I went before cell phones, with people I did not know and I was out once for 10 days and once for 22 days. I got on a bus in Indianapolis, a train in Chicago and a bus in Denver. I took insulin, syringes and my parents well wishes. They told me to call when I could and hoped I came home. This was 1974, no portable home blood sugar testing, plenty of Bears, and a small Forrest fires.
I survived. But I still think my parents never made the decision about one or the other. Instead they made the decision to trust me with both. I fouled up a lot, but I was fine. The watch words were take care of your self to stay out of trouble. I did it. So was it kids before diabetes? Nope. It was kids being undefeated people with diabetes.