We’ve only been swimming in the Diabetes pool for a short while, but even so, we’ve heard a good number of well-intended, and yet less-than-helpful things. Again, I know people mean well, and for the most part, they are simply ignorant of the details—as we were before D-day landed on us like a flaming meteor. With that, what follows is meant to bring awareness… but also to reveal (in my own pointed way) certain things to consider while chatting with the parent of a child with Type 1 Diabetes.
“It will be her new normal and she’ll be fine. Give it some time.”
Being the only one at the sleepover who needs to draw blood, test her sugar level, choose between the Oreos and the chips, check the carb listing on the bag of chips, count all the chips on her plate, do a math problem, and then inject herself before sitting down with the rest of the middle school girls to watch the movie—all of this will in a sense be new, but only because there will always be those in the room who stare as they behold it for the first time. It will never be normal. Let the staring be the evidence. And by the way, as she prepares for the sleepover, apart from her sleeping bag, pillow, and favorite stuffed animal, she’ll need to be sure to have her glucometer, test strips, appropriate snacks, a juice box, alcohol wipes, lancets, syringes, insulin, and glucagon. “Pardon me while I move this medicine cabinet-like backpack into the corner of your living room. Move along, friends. Nothing to see here.”
“Well, at least she doesn’t have cancer.”
Do me a favor, will you? Don’t say that again. Pitting diseases against one another isn’t at all comforting. But since you brought it up, no, she doesn’t have cancer, but she does have a deadly disease that can’t be cured. There’s no use in thinking that she might be cured by radiation treatments or that precise chemotherapies will bring the promise of remission. With this particular disease, there’s a never-ending specter hovering above her and all charged with her care. An unknown and steady timeline of instability can permanently damage her internal organs. One miscalculation or a sudden drop in blood sugar in the middle of the night while we’re sleeping and unaware and she could die. It’s not cancer, but it’s still pretty damned terrible.
“All of the finger pricks and the needles must be scary. Have you thought of telling her that you’ll do it, too, to help her feel better?”
You know, that’s a really great idea, because as her father, the first words that felt right to say to her were, “Honey, I’m so sorry, but this is your disease and you’ll have to bear it alone.”
We’ll do anything—even die—to help her.
“She’s little, and kids are resilient. Soon it will be no big deal for her.”
Maybe, but we sure as hell aren’t there yet. And neither is she. In fact, I wish you’d have been there when it finally clicked for her that this disease is forever. The sadness was impenetrable. Still, while we never show fear around her, in truth, Jen and I are terrified and overwhelmed. “No big deal” is probably a good long way from us right now.
“You never know. Maybe she’ll grow out of it.”
Well, no, she won’t—unless, of course, all of the sudden pancreases become irrelevant to the human existence. Till then, she’s stuck. Her pancreas doesn’t work anymore. This is forever.
“Gosh, she needs to do injections? I could never be stuck with so many needles so many times a day.”
First of all, don’t ever speak those words in front of my daughter… or me. Your life could be in jeopardy if you do. Second, if it was for you the difference between living and dying, I’m guessing you’d take a chance with the needles.
“My friend is a diabetic and he takes pills to regulate. Can’t your daughter just take insulin pills or something?”
I don’t know what those pills are, but I know that the human stomach digests insulin. It must be injected into fatty tissue to work. If your friend is taking pills to regulate his diabetes, then he is probably a Type 2 diabetic. Type 1 and Type 2 are nothing alike. In fact, they should seriously consider changing the name of Type 2 to something else. It confuses people and it makes the Type 1 families crazy.
“Thank God it’s just Diabetes! That’s no big deal.”
Just be quiet. Seriously, just stop talking.