Editor’s Note: A few weeks ago we ran a very popular story to help friends know what to say to the parent of a child with diabetes. This week, we flip that around. We hope you and your friends find it just as useful and share.
I am a “D-parent.” In other words, I have raised a child with diabetes through 17 years, through the days of NPH and Regular, and of meal plans. I’ve raised her through the little kid years, the teen turmoil, college craziness and now, awesome young adulthood.
So, needless to say, when it comes to what people will say about a raising a child with diabetes, I’ve heard it all. In fact, I could probably make a list longer than Kendall Jenner’s legs of all the — ahem – not so cool things people have said to me over the years.
I’m going to share a few of my favorites (favorites is a funny word for this), and how I did and didn’t respond. Parents can commiserate, share similar experiences, and maybe, just maybe, some non D-world folks out there will read this, think hard, and stop before opening their mouths next time something whack is about to come out.
“I just read that they have pills instead of shots now.”
What I Thought: Right. Of course they do – and when I call Children’s Hospital in Boston (the top rated pediatric endocrine program in America, where my child was lucky enough to be treated at the time), they are going to be so excited about your news! Imagine all the kids who are needlessly poking themselves with needles and infusion sites when all along they could have just taken a pill.
What I Said: Thank you so much. I am not sure you are aware that there are two types of diabetes, Type 1 and Type 2. Type 1 is an autoimmune disorder in which the body no longer produces insulin. Since a pill form of actual insulin does not exist, my child still has to take shots. The pills you have heard of treat people with Type 2, who still have the ability to make insulin. Also, the shots really are almost the least of it. We don’t even consider them a big deal.
“OMG I could never give my kid shots! Or prick their fingers.”
What I Thought: I know, right? I totally considered having her put to sleep but the cost was so prohibitive.
What I Said: It’s amazing what you can adapt to and come to consider “just normal” in your life. We found very quickly that not making a big deal out of things like finger pokes and shots made all this easier to take. We’ve convinced ourselves that it’s just another layer of living, and we go with that. I know you are a good parent; you’d totally do the same. But I’m glad you don’t have to.
“It’s been so long. Why isn’t she regulated yet?”
What I Thought: Because I just don’t love her enough. If I loved her more, her numbers would totally stabilize.
What I Said: Type 1 diabetes means that the body does not produce insulin. And since the synthetic insulin and tools to track what it is doing in the body is still pretty crude compared to the workings of a real pancreas, there is nothing I can do to 100% “regulate” my child’s blood sugar. In fact, you can count on things changing literally every few hours of every single day; around the clock.
“I thought she had that pump implanted? Doesn’t that just take care of it all now?”
What I Thought: Well, of course. And it also vacuums our dining room floor without me even telling it to. I just keep forgetting to flip the ‘on’ switch. You know how busy life gets.
What I Said: The pump is an amazing tool, one of the greatest breakthroughs of the past 20 to 30 years. And pumps keep getting better. But really, a pump is just a tool. It’s not smart; it cannot do what a human does. A person wearing a pump still must prick their fingers many times a day, count carbs and make insulin calculations based not just on their personal needs, but on what time it is, what they’ve been doing or not doing all day, if they have a head cold, if they are stressed, and so on. Pumps do replace shots, but they don’t replace the constant mental and cognitive challenges that come with every single treatment decision every single hour of every single day.
“My grandmother had diabetes and she was always really sick. I think she had some kind of stroke, too. Really, it was horrible. And to think if she just stayed away from those jelly doughnuts.”
What I Thought: Oh, but a life without jelly doughnuts? Who would subject a kid to that? Better a short life with a glazed blueberry than a long life without, right?
What I Said: In today’s world, thankfully, those kind of complications are almost a thing of the past. I am so very glad we have seen the improvements we’ve seen, like being able to know what a child’s blood sugar is in almost an instant. Your grandma maybe didn’t have that option. I’m sorry for her suffering, but I’m thankful to let you know that most likely is not my child’s future.
“You should have just fed her right in the first place.”
Sometimes what you think and what you say turn out to be exactly the same.