“I’m afraid I’m not good at things,” she says.
She’s 10. That’s normal, right? To be 10 and worried about not being good at things?
“Why do you say that?” I ask.
I’m the mom. I’m supposed to ask. Not to assuage (“Oh, Sweetie, that’s silly! You’re good at lots of things!”). Not to assume (not good at math, not good at piano, not good at sports) but to inquire, to let her take the lead, to listen so that she feels heard.
“Because I’m worried…” she says.
Worried is worrisome. A big word for a little girl.
I worry too. I’m the mom. I’m supposed to worry, right? And this conversation is starting to worry me.
Because I’ve always been a worrier, since I was her age, in fact, my thoughts in constant overdrive, my psyche and my shoulders forever bearing the weight of an uneasiness here, a burden there. The anxiety of school and tests and marks. The anguish about friends and boys and relationships. The existential questioning of my marriage, my parenting, the weather.
But most of all, I worry about her. The typical worries that every mom has for her 10-year-old daughter. The being snubbed/being picked on/being left out kind of worries. The getting lost/falling off your bike/getting hurt kind of worries.
And worse worries, too. How could a mother not worry about worse things, with the never-ending barrage of tragic headlines and Facebook Amber Alerts? The being abducted/being assaulted/being murdered by a stranger kind of worries. The being betrayed /being violated/being destroyed by someone she knows and trusts and loves kind of worries.
But I’ve got other worries too, worries all my own. The worries of a mom whose 10-year-old daughter has diabetes.
And this is why I’m holding my breath, dreading what she’ll say next. Panicked that despite my best efforts to protect her from my own insecurities, she’s seen right through me. Flooded with guilt that she’s figured out that she’s at the root of my fears. Terrified that my worries are now hers.
Because I worry that no matter how closely I monitor her blood sugar, she’ll drop dangerously low. I worry that no matter how precisely I calculate her carb intake, she’ll spike dangerously high. I worry that every minute that she’s not with me (she’s at school, she’s at her grand-parents’, she’s playing outside with friends) is another 60 seconds that I can’t keep an eye on her and on her continuous glucose monitor and on whether she’s trending high or low and whether I need to do something about it.
(“Have a juicebox, Sweetie.”)
(“Looks like you need another shot of insulin, Sweetie.”)
I worry that I’ll make a mistake. That I’ll do her harm. Those are two of the worst worries. But they’re not the ones that keep me up at night.
(Because I have made mistakes.
I’ve miscalculated her dose and given her too much insulin and watched her blood glucose plummet. “Give her anything she wants to eat,” the on-call doctor advised over the phone. “Ice cream, cookies, bacon…now’s the time to let her indulge. Just get as much food into her as you can.” Because you can’t take the insulin back out once you’ve injected it in.
And I’ve forgotten to take the needle guard off her insulin pump infusion set before I inserted it into her belly and seen her blood glucose skyrocket. “Take the pump off her now,” yet another on-call doctor advised during yet another frantic call. “Give her an injection of 10 units by syringe right away. Check her urine for ketones again in two hours and then call me back.” Because if the insulin doesn’t get into her, her useless pancreas certainly isn’t going to pick up the slack. And the last thing we want is another trip to emergency for diabetic ketoacidosis.
Everyone makes mistakes, right? Even moms.)
No, the worries that wake me up at night, the worst ones are the ones that haven’t happened yet.
Because, even though the everyday is exhausting at best and overwhelming at worst, it’s never just about the diabetes. It’s about all of the potential future complications she faces because of the diabetes.
It’s her increased chance of developing celiac disease. (Let’s add the burden of going gluten-free to all of the carb counting and calculating, shall we?)
It’s the fact that one third of people who have had diabetes for more than 15 years will develop kidney disease. (She was diagnosed at 6. She’ll be a tender 21 when this becomes a distinct possibility.)
It’s the potential nerve damage that could lead to infections, gangrene and amputation. (Please, god, don’t let my daughter lose a limb.)
It’s the eye issues: cataracts, glaucoma, retinopathy. (Please, god, don’t let my baby girl go blind.)
And while we’re at it, how about anxiety? Depression? Eating disorders? It’s bad enough that she’s a girl and already more likely than her brother to have mental health, self-esteem and body issues. Let’s make her hyper-aware of every morsel of food she consumes, force her to prick her fingers for blood tests 10 times a day, attach an insulin pump and tubing to one side of her stomach and a continuous glucose monitor sensor to the other, and see what those do for her mental health, self-esteem and body image.
Those are the ones that keep me up at night.
So when people ask how we’re coping, I don’t say, “We’re getting the hang of things. But what if no matter how hard we try, we can’t control it?”
When people ask how she’s doing, I don’t say, “She’s doing better. But what if no matter how well we control it, she ends up anorexic/on dialysis/blind anyway?”
And when people insist, “Yes, but how are you?” I certainly never say, “Really, I’m fine. But what if she dies and somehow it’s my fault?”
Because this is what’s at the core of every glance at her glucose monitor to see what her numbers are. Of every extra finger pick just to be sure the monitor is calibrated correctly. Of every recalculation of every carb. Of every verification that the insulin dose her pump is recommending corresponds to what I’ve already figured out it should be, based on her current blood glucose, her insulin-to-carb ratio for that time of day, and what sort of physical activity she might have coming up in the next hour or two (or already had in the hour or two previous).
Yes, I worry. But really, I’m fine.
(But what if?)
And honestly, there’s no point getting into all that. I wouldn’t want to worry anyone.
“…because it could happen, you know,” she’s saying, and I realize that in my panic I’ve missed what she said.
She sees it too, and with a petulant little huff, she repeats, “The end of the world, Mom! I’m worried that if the world was ending and I had to save my family, I wouldn’t be good enough at stuff to save them!”
Not at all what I was expecting. Although considering the books she’s been reading lately, this isn’t a total surprise. Like her brother, she gravitates towards adventures. Stories with children unwillingly propelled into extraordinary situations. Confronting great challenges. Facing terrifying odds.
I can’t help but see the parallels that, for now at least, she is completely unaware of: the fact that she’s already on her own harrowing adventure, confronting daily challenges and facing terrifying long-term odds.
No, this isn’t what’s preoccupying her 10-year-old mind. It’s not the alcohol swabs and insulin, the blood tests and injections, the highs and lows. It’s not that this is her everyday today and, until there’s a cure, her everyday in the future. It’s not the scary unknowns. It’s not, in fact, the diabetes at all.
No, for now, what’s weighing on her fragile little shoulders and bringing my daughter to frustrated tears is that she’s worried about being strong enough for us.
Oh, Sweetie. That’s nothing you have to worry about.