A few years ago, in the midst of a stretch of trying days—the kind of grinding, endless days where it was all I could do not to carve the words HELP ME into the living room wall with a bloody whisk—my life touched a good thing in the form of a blue-eyed girl with a charming lisp. She helped me re-find possibility during a week when everything was dark and negative, a week when I was ready to go out and buy a VW van so I could drive off into the sunset, cranking Neil Young and savoring the melancholy of dusk. This girl was nine; she wanted to be an actress; she liked to catch tadpoles; and she has Type I diabetes.
While we’d had her over for play dates and birthday parties, we’d never ventured into the larger commitment known as The Sleepover—mostly because it was intimidating to be the adult in charge of someone who could die if I wasn’t paying attention. However, since Andi was at an age where a certain amount of self-care was a valid expectation, we decided to extend the invitation—which was greeted with shrieks that she had never been so excited in her whole life. It helped that we were also offering up pizza and a ride ON THE CITY BUS to watch the Christmas parade, before the actual sleeping over even commenced. Not only had Andi never ridden on a city bus, she had never been to a parade before. There was quivering.
When her mother dropped her off, they trained me: I met the meter and kit used for bolus doses, the rice cakes, the baggie of glucose tablets; I heard her numbers (“She’s been over 400 this week, running high because she’s excited for this sleepover, but today she has a new site for her pump and new insulin, so she’s evening out. Call anytime”); I was told the schedule for blood tests (after dinner, at bedtime, two hours after bedtime, and then we’d see). Although my head was spinning , we were ready to commence the fun.
Andi had a piece of pizza, got big eyes on the bus, and danced during the parade. At one point, when a piece of candy landed at her feet, and all the other kids were unwrapping theirs, Andi turned to me, holding up a small mint, and asked, “Can I have this? It’s less than one carb, so I won’t have to dose.”
Jokingly, as I told her yes, I said, “Honey, I sooo don’t have a grip on all this stuff. I have to believe anything you tell me.”
Her immediate, vehement response was, “I. take. It. very. seriously.”
Hours later, as she prepared for bed, she checked her glucose levels (“2-2-2,” she told me), called her mom, dosed herself, and ran, giggling, up the stairs. As I tucked her in, I admitted that I was nervous to wake her up in a few hours: “Since you’re not my kid, I worry that I’m going to scare you.’”
Andi admitted, “I’m probably going to be mad. I’m pretty mean when I get woken up for a night time check.”
“Hoh-boy,” I sighed back at her. “Well, how about this: if you’re crabby when I wake you up, I’m going to tell you that I’ll buy you a pony in the morning, if only you’re nice to me?”
Andi grinned at the notion and said, “Deal.”
At 1 a.m., juggling her meter and kit, rice cakes, and a bag of glucose tablets, I prepared to stroke Andi’s hair until her angry eyes opened. However, keyed up by the unfamiliar situation, Andi woke immediately. She sat up, shivering, and rubbed her eyes. Then, with unimaginable efficiency, she stabbed her finger, failed to draw blood, lanced it again, squeezed, put the resultant drop onto the slide, inserted it into the meter, licked her bleeding finger, and waited for the number.
A big 63 popped up.
Immediately, Andi said, “I have to eat something” and cracked into the rice cakes. Silent except for the crunching, we sat in the dark. “Now I need a tablet, too,” she announced, and continued chewing.
When she was done, I asked, “Hey, Andi? That was a low number. Should I check you again in a few hours?”
That’s when she got me forever. The soft, sleepy, clinically-efficient 9-year-old in a sleeping bag responded, “I don’t know. Maybe you should call my mom.”
Certainly, the mom-to-mom phone call at 1 a.m. is no one’s favorite duty. Fortunately, Andi’s mother is worthy of such a daughter and snapped to attention quickly. “Yes, that’s low. She needs to eat.” She did. “She needs to eat more. Do you have a granola bar? If you can get one into her, she’ll be fine until morning. Was she really crabby with you? She gets like that when she’s low; her brain isn’t firing right.”
Yes, I had a granola bar. No, she hadn’t been the slightest bit crabby. Her brain had been firing just fine.
As we watched my daughter sleep soundly, Andi and I sat again in the darkness. Yawning between bites, she munched on the granola bar. Finally, with one last swallow, she plopped down onto her pillow and cashed out.
Moments later, head plopped onto my own pillow, I considered how there is something heroic in a kid who lives stoically with chronic illness; how jaw-dropping it is to see matter-of-factness in a little person who doesn’t get to take her body for granted; how much I respect that she doesn’t inveigh against her blood, her pancreas, or the fact that her innards have a notion to defeat her; how resolute she will have to be for the rest of her life—even during her college years, when she moves away from home, when everyone around her is engaged in a season of purposeful neglect; how I no longer needed a VW van at sunset because I had a date to go buy a pony at sunrise.