Reconciling a carefree life with a demanding disease
It’s a lazy Friday afternoon in the middle of October. My good friend pulls in the driveway unannounced, both of her kids dangling out the windows waving plastic swords. “Let’s go get into something,” she says. My 4-year-old daughter grabs a stuffed monkey and a pink wand. I grab the baby. We pile into her station wagon — wands and swords banging, radio blaring, kids singing, “who knows why the bumblebee — not me, not me, not me!”
These days we take the long way everywhere we go. Windows down, dust flying. Time means nothing and hours are measured in juice boxes. We go on like this forever — luxuriating in possibility. Weeks turn into months. Months into years. We’ve mapped the entire state by memorizing its country roads. Changing the radio station cures a cranky toddler and partially sticky band-aids solve all our problems.
It’s a Friday afternoon in the middle of February. My husband and I are sitting in a cold exam room at Children’s Hospital. Our daughter, now 10, is nervously pacing the perimeter of the tiny room. She’s wearing a paper gown. Her head is down, her arms defiantly crossed, “not me, not me, not me.”
Our daughter has just been diagnosed with Type 1 diabetes.
From the minute you, or someone you love, receives diagnosis of a chronic disease, your view of the world shifts. It doesn’t take time to sink in. It starts now. The clock is reset. Your life is redefined.
Imagine jumping into the deep end of a swimming pool. You get a running start, plug your nose, cannonball. You surface within seconds but nothing looks the way you left it. The whole scene has shifted. Is it the chlorine? The hot sun? The saturation has been turned way up. Everything is slightly sharp and dangerous. You wrap yourself in a towel. Have a seat.
When my daughters were very young I willingly traded sleep for a crash course in sacrifice. Breastfeeding turns mothers into night watchmen. You are awake when others are asleep and perpertually in awe of what the body can provide — comfort, nutrition, a sense of satiety and safety. My husband and I were co-sleeping before it was trendy and despite catching a lot of flak from family, I wasn’t about to give it up. Family bed will forever be one of my coziest memories. Every night around 3am at least one of our toddlers would show up bedside. A small face would appear inches from mine, “It’s me, Mama. Can we snuggle?” And in she would climb. Even in my deepest sleep I would wake long enough to lift the covers and toss my girl into the middle of the bed. Mornings would come too soon and after a scant 4 hours of sleep we would wake to find that she had shifted horizontally. Curly head at my belly, tiny feet kicking my husband in the gut. An acrobatic move that would land the three of us in a capital H.
But post-cannonball, nighttime lost its magic. I wake in a sweat and check the clock — 3 a.m. Now it’s my turn to seek comfort and clarity in the middle of the night. Down the dark hall, I open the door to my teenage daughter’s room. I check to make sure she’s breathing. I sit on the floor next to her bed and worry. I deliberate poking her soft, thin fingers with a needle, drawing a drop of blood to test for sugar. Most nights fear gets the best of me and I pull out her medical kit. I poke. I wait for a number to pop up on the digital screen with its alarming, “BEEEEEP.” The number will be anywhere from 35 to 435. The number dictates the rest of our night. Above 200 mg/dL and I break out the needles to inject insulin into her soft sleepy belly. Below 70 and I rush to the kitchen for sugar. The juice boxes that once marked time now keep my daughter from slipping into unconsciousness.
Some nights I forego the testing and instead I crawl in bed next to her. I lie awake all night, choosing intuition over intrusion. I feel for the breathing. I wait for the twitching. I listen for the moaning — signs I’ve come to recognize when her body is struggling with a hypo- or hyperglycemic episode.
There’s no blueprint for living with a disease like my daughter’s. There are meds and medical devices, specialists and scripts, but the origin of this autoimmune disease is imprecise and so are its treatments. You memorize insulin-to-carb ratios and calculate energy expended so that your kid can make it through a softball game without passing out. But more likely than not, those ratios will change next week due to a subtle hormone fluctuation and your calculations will be way off. Your kid will sit the bench.
The first time I prepared an injection for my kid I was amazed to see that after following the lengthy instructions and calculations, a dose of insulin the size of a dew drop appeared at the tip of the needle. It seemed a miraculously small amount of hormone required to change my kid’s entire physiology. But you quickly realize that the dew drop amount needed to metabolize a plate of pasta is the same amount that can kill you if injected on an empty stomach. Your family lives on a razor’s edge. Eating becomes stressful. Exercise is nerve-racking. Best of luck avoiding an eating disorder.
My good friend calls. “Let’s go get into something,” she says. Her call is a life jacket. She keeps me afloat. We drive around the city at night, just the two of us, as our kids are now old enough to make their own fun. Radio cranked up, we marvel at the beauty of our city. We talk quickly and listen earnestly, eager to catch up with one another. For over a decade we’ve been parenting together. Our tiny tribe still thick as thieves. But the elephant in the room is that our parenting duties have diverged. Her kids are experiencing wild freedoms that my daughter has yet to see. They board planes and fly across the country without supervision.They go on dates and to school dances without lugging medical supplies. They attend sleepovers without explaining to friends how to inject emergency glucagon if they don’t wake up with everyone else in the morning.
In Type 1 diabetes, calibration is the process of readjusting the machinery used to measure blood sugar. This is a crucial step in managing a delicate disease and without calibration you would be working at a disadvantage. There is no cure and treatment relies on accuracy of formulas and finely-tuned devices. Calibrating offers a point of reference. If the train starts to go off track, you can usually rectify the situation by evaluating where you are, adjusting and starting fresh. It’s an opportunity for reassessment and an indication that we get do-overs at every level. This gentle reminder is a gift that propels us forward.
Imagine wading into the shallow end of the pool. The sun is warm and the water is inviting. Your friends are there and with large sweeping gestures they’re motioning for you to join them. You wade a little further until the water is waist deep. You pause. Slow and deliberate, you pull your goggles down over your eyes and take a deep breath.
Originally published at beyondtype1.org on January 4, 2018.