At the heart of the matter: What matters to the person with diabetes isn’t always what matters to us.
A quick note of apology for the lapse in blogging here. Blame it on Irene: We had no power for days and days. But I’m back. Waiting for the roofer to fix the torn-up roof but back nevertheless.
It never really dawned on me how at odds our diabetes desires are with those of our loved ones with diabetes. Yes, we share the relentless drive for a cure and we look daily for better treatments. True, we all think diabetes blows. But I’m beginning to think that the deep-down wishes and worries of those who care about someone with diabetes are quite different than those who have it themselves. And I’m beginning to think this may be what is at the very root of the conflicts teens with diabetes have with their family and friends.
It came to me as I was reading the marvelous book “Don’t Kill the Birthday Girl.” “Don’t Kill” is the memoir of Sandra Beasley, a young woman who has suffered food allergies the likes most of us have never even imagined. And while food allergies and diabetes are two very different beasts, there was much in her story that resonated with me. Like how it seemed to her that every single school day of her childhood was someone’s birthday, and every single birthday meant watching the cupcakes get handed out while the teacher reaches for your “special treat.” (In her case it was 12 hazelnuts, which she’d line up in the little groove at the top of her desk; in my daughter’s case [don’t forget, we were in this diabetes world before rapid acting insulin came along] it was a pencil or sticker or some other “goodie” that was supposed to make it all right. Or like how every road trip had to be planned out meticulously, with the right foods and medications along and a proper distance from a medical facility. Yeah, we’ve played that game.
But it was this line in her book that made me sit up straight (which was not a good thing since I was balancing a flashlight on my chest and reading my way through Hurricane Irene):
“The good news is that teenagers with allergies, unlike most, know they’re vulnerable. The bad news is, many don’t care – at least, not enough to sit at the peanut-free lunch table or teach their friends how to use an Epi-pen or wear jeans with pockets roomy enough for an inhaler. In an earlier study, the same team of doctors found that teenagers said that the hardest part of living with food allergies was ‘social isolation.’ Their parents sited the most difficult issue as ‘fear of death.’”
In other words there was her mother, stressing every moment about the reaction that might kill her daughter. And there she was, stressing at every moment about how the tools and actions needed to calm her mother’s fear would kill her social life.
Ummmm . . . bingo.
We parents – and friends – and lovers—and neighbors—and teachers—expend the majority of our diabetes energy on keeping our loved one safe and alive. Heck, I started thinking about Lauren’s kidneys and eyes when she was only six years old. You know what I’m talking about: every time a meter registers high or a shot is forgotten or a pump site crimps, deep down in our hearts we caretakers are thinking on thing: Please don’t let diabetes kill him/her.” It’s what drives parents to wake up every two hours, sometimes many nights in a row. It’s what sends us over the end on report card – errrr I mean a1c day. It’s what keeps us trolling the internet for better ways to treat, newer ideas for care and, goodness help us, hints that a cure is on the way.
But could that constant state of alert be what eventually drives our teens and young adults away from us when it comes to diabetes care? When kids are little, they want nothing more than to please. My older, non D daughter, was lucky enough to get her headgear for braces when she was way younger than most. Let me tell you something, that orthodontist had never seen a “time worn” chart as richly colored in as hers. The idea of pleasing and succeeding trumped “looking goofy” in headgear. Caring for your diabetes isn’t much different. Little kids want to please us. They’ll (somewhat) happily check a billion times a day. They’ll wear their pumps outside on their waistband. They’ll admit to feeling low and treat anywhere, any time. They are our diabetes puppets. And we like that. After all, we want to do all we can to ward off the worse.
But as they grow into their own beings, things change. In time, they come to be just like Beasley so bravely admits: more concerned with their social life than with their physical life. And since they are not with us every minute, have minds completely of their own and often are just plain bigger than us, there’s not much a diabetes loved one can do.
Or is there?
I remember the week my daughter was diagnosed. It was Halloween, and the hospital had all the kids dress up and “trick or treat” at the nurse’s stations. Each station made sure to have something for the “diabetes girls” (there were two of them that week). The kids came back, most with a bag of candy, but the two “diabetes girls” with literally a wagon full of toys. I mean big toys. One little boy was crying, ‘I want to have diabetes! They get everything!” But even with the big toys, the two little girls felt different. Then, the hospital had an activity. As God is my witness, my newly diagnosed daughter was invited down to decorate cookies. Giant cookies. With goopy goops of frosting.
I kid you not when I say my heart seized. I peered in that room full of sweetness and saw one thing: death. In a panic, I dialed up our CDE, gasping. “What should I do?”
Calmly, she told me to take three breaths and then said. “Let her decorate the cookie. Let her lick her fingers. Let her eat it. Or not eat it. Moira: let her be a kid. We can fix the blood sugar later.”
And so, barely hours into this D life, I did just that. And the CDE was right. She was a little high; they gave her a little more insulin. No one died. (although that was her first higher bg since dx. I’ll admit to visulalizing her kidney’s breaking down right then and there).
I wish I could tell you I took that teaching moment and applied it instantly to life. But I did not. I spent years aiming at blood sugar perfection. I set rules to keep my daughter safe. She never had to say no to a sleepover, she just had to offer to move it to our house (to this day, there are a group of girls who have slept in my house so many times I think they could move in without me noticing much of a change). I nagged a lot. I pushed and pushed for my daughter to be a perfect diabetic.
And as a teen, she rebelled. I now realize all my begging and cajoling and explaining about long term complications and short term dangers may have been for naught. God bless her, my teen just wanted to fit in. Just like Sandra Beasley.
So looking back, what would I do different? That’s hard to say. Maybe look more at the big picture than the little (meaning, if her averages are relatively okay all is well; and if one time the a1c goes up a bit I needn’t act like the world has ended). Perhaps I could have found a way to acknowledge that this all impacted her socially. I honestly never remember having that kind of conversation with her; so busy was I worrying about keeping her alive and alive for a long time.
My daughter’s doing well now (more on her 20th birthday when it comes in a few days!!!), but I fear I may have failed her in some of those years. I worked so hard at being the protective mom; making sure she ate right and checked her blood and treated highs and carried stuff for lows and understood the need to bolus and count every carb she ate. What if I’d just been a little more empathetic? What if I tried to understand how she really felt instead of trying to push on her how I felt? And as I read on, I wondered if Sandra’s mom was thinking the same thing.
Then I came to this line, late in the book. Sandra has just attended an allergies conference and begun to make a difference, along with another woman named Jen, in how kids with allergies are treated.
I have to honor that there’s an intimacy there, too, one unique to any parent who manages a child’s chronic illness. My mother, the diplomat. My mother the (un)registered nurse. My mother, the translator of cries.
If my child did have allergies, I’d know where I’d look for guidance. My mother, the teacher. If kids like Jennifer and I have blazed a trail, it’s only because parents like her cleared the path.
So maybe I could have done better. Maybe the mom of a younger kid will read this and correct my mistakes with their own child. But in the end, I think our kids know that when it comes down to it, we just plain love them. Even when we are ruining their social lives, they know we are doing it with all the love in the world.
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