The Wild Blue Yonder

by Steve

How do you manage? This is one question in relation to Lia’s diabetes that Franca and I hardly ever get asked. I can’t remember the last time in fact, which is both bizarre and at the same time understandable, because caring for type 1 diabetes is one of those things where looks are not only deceiving, they can outright cloak and camouflage the real dangers and challenges, making it feel like you’re piloting the Stealth bomber of incurable diseases. It’s a ton of commanding work, fraught with great risk, but one no one ever notices, until something crashes.

Helping in this is the fact that Lia is truly a champ. She does what she has to and rarely if ever bitches about it. Certainly, she doesn’t complain to anyone else. Only to us, and that is just how it is because we are her parents and parents know when their children are hurting and denying them a voice doesn’t do anyone good. I don’t care how tough you are. Diabetes hurts. A lot. And often.

As a result, however, what everyone else sees is just this kind, happy kid who sometimes has to prick her finger, give a little extra thought to her food, and fiddle with some contraption she wears around her middle. Big deal. Isn’t she handling it nicely? (Don’t you ever want to say to them: Yes, of course, she is handling it nicely. What choice does she have? She has a job to do, just like everyone else, and that job is to grow and become her own person, with or without a stupid pancreas.)

So on that hand I get it. People see Lia at her best, taking care of herself, growing, learning, further defining her person. And from that I can also deduce why no one would give a second thought to the effect diabetes is having on Franca and I. Honestly, we don’t even give it much thought ourselves. The weight is just something that’s there, we own it. Call it worry. Stress. Whatever. It’s heavy and it’s permanent, like a steel wire cable suspended from the base of your skull and rooted into the earth. You drag it dutifully wherever you go, over and about the landscape, through whatever muck, mire or meadows you find yourself.

What has been important for us is that we have been there for one another, because each other is all who we have—I say this not wonting for sympathy or to sound dramatic, it’s just the way it is for parents of children with diabetes, for the reasons I’ve mentioned above—and the days when we could leave Lia at someone’s house, anyone’s house who doesn’t just think she is handling it nicely but is fully aware of every special nuance, so that we might enjoy time alone, and not brood and toss and turn and wait for the liberating call the next morning, are a thing of the past. Lord only knows how you handle sending them off to college—we will when the time comes, I know, and fortunately we’ve got a few more years to prepare—because parenting is difficult, no matter the objectionable add-ons.

But that’s not what I wanted to write about, further making my point, I now see. People don’t ask how we are doing because they don’t understand diabetes. They don’t know how mentally, intellectually and emotionally time-consuming it can be, they don’t understand how the technology and the treatment, how the very disease itself—you can’t see it, you can’t touch it, hell, most people can’t even define it—how all of it adds up and makes caring for diabetes look easy.

It’s not, but somehow, like so many other parents and people with diabetes, we manage. We suck it up, we cope. We cram it into our schedules like a trip to the DMV, we treat it like a pilot treats their flight plan, just part of the routine, and we carry it with us wherever we go and we do it without too much griping because that is our job. We’re her parents and parents help kids learn to fly on their own.

Asking someone how they manage something so invisible as type 1 diabetes certainly may not cross anyone’s mind, it may even feel oddly unwarranted in a so-you-think-you-have-it-bad kind of way—to be sure there are plenty who suffer from worse—but if you’re reading this and you know a parent out there who is caring for someone with diabetes, do them a favor and ask them how they are handling it. They will probably feed you a lie and say: Oh, it’s just swell, thanks for asking.

But even a pilot with one of the most deceptively, undetectable roles in the world deserves the chance to brag every once in a while.