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Sweet Caroline: Learning to Care for Our Daughter with Type 1 Juvenile Diabetes

Tuesday, November 15, 2022

By Celeste Fisher

In labor, we still hadn’t chosen her name. I stunned my husband by saying, “I named the first three, so you get to pick.” He gave me a look that translated to there is zero chance you’re letting me do that, must be the pain talking.

“Really,” I said between contractions, “whatever name you’d like.” My gift to him.

“Caroline,” he said, “like Caroline Kennedy.

We brought Caroline home from the hospital delirious with joy and the accompanying exhaustion. We settled into the sleep-deprived nights of having a newborn. The ones where you know the gentle mewling from down the hall is merely about wetness or hunger and you can hold onto a thread of foolish optimism that the baby will fall back to sleep on their own (ha), so you roll over for one second. Maybe you and your partner even play a game of fake-sleep chicken while praying the other will volunteer. Then you wonder, when was her last lullaby?

We had those sorts of gentle awakenings in the beginning. But as she got older, I noticed more than the usual few golden strands of hair between my fingers when helping her rinse out shampoo and while brushing her hair. Then I started to notice weight loss. The First Communion dress I bought her was two sizes smaller than her Christmas dress purchased only a few months earlier.

I asked my husband if he noticed. “Kind of,” he said, “but I bet she’s just growing the way I did. Arms and legs sprouting all over the place.” He reminded me she’s not built like her three older sisters, who take after my Italian side. Yes, she’s just growing like a weed, I told myself. Maybe it was an optical illusion.

Then, Caroline became obsessed with water bottles. But her sister Emma, whom she worshiped, collected them—the Hinckley Springs with the click tops, the rainbow one from the Gap, and the treasured glass VOSS water bottle. So, I missed the significance of the extra requests for water bottles. When your child gets a headache, you don’t immediately jump to brain tumor, so I still hadn’t connected thirst as a symptom.

But I finally called the doctor after a sleepless night of trying to make myself believe in optical illusions. The phone rang at 6:30 the next morning. The lab called our pediatrician at home who immediately called me: Blood glucose dangerously high. “Be prepared,” she said, “you may find her in a coma.” I dropped the phone and tore out of our bedroom, while the words ketoacidosis, DKA, pancreatic something, and coma chased me down the hall. After not finding Caroline between her pink gingham sheets, I ran from room to room and flew down the stairs, slipping and recovering twice.

Finding her teetering in a diabetic coma is something that changed our family forever.

I’m not a science or math girl. I’m an artistic, literary girl. But when Caroline was diagnosed with Type 1 Juvenile Diabetes, I stopped writing for two years to learn how to care for her. I shut down my creative, right brain and directed any intellectual reserves into the left brain pursuit of learning to operate like a scientist, mathematician, and engineer.

As parents of a Juvenile Diabetic, you ban slumber parties and sleepovers at cousins’ houses. You don’t hire a sitter, even a good one, and take a weekend away because you don’t trust anyone to monitor your child throughout the night. The stakes are too high.

I learned that Type 1 accounted for less than five percent of diabetics overall. Caroline’s was the rare, autoimmune diabetes that could not be cured with a spiffy tracksuit, a healthier diet, and those once-daily pills you see on every other pharmaceutical ad. Her pancreas no longer produced insulin and without it, sugar builds up and poisons her blood. Even if she never had sugar or a carb again, without insulin she’d be gone in three days.

It was a crash course in calculating sensitivity factors, insulin-to-carb ratios, correction factors, basal rates, and boluses. We learned how to draw up insulin, give injections, and test her blood nearly hourly. We learned how to calculate her dose in the morning, at every meal, at every snack, after every physical activity, and before bed. We learned how to operate a continuous glucose monitor that measures blood glucose through a port in her belly. This mathematically challenged mommy learned with horror that the difference between .05 units of insulin and .50 could be fatal. This became our reality, our new abnormal.

I often recalled those blissful 3 a.m. newborn cries, where I had the luxury of rolling over and praying I had just dreamt them. After her diagnosis, we were woken by CGM alarms. High-octane, adrenaline-pulsing calls to do a math-science pop quiz in the middle of the night, in the dark, seconds after being roused from a dead sleep where you must not only pass the exam but score a perfect A+ or it could be fatal. Then we would apologetically cringe and give our sleepy girl an injection or squeeze a juice box into her mouth.

She did graduate to an insulin pump. We learned to program, calibrate, load, and analyze its data, but we still tested through the night, every single night, because pumps and CGMs fail. Ours failed at least twice a month, though we were lucky to have the best one (and excellent healthcare). Technology is improving but until there is a cure there are hospitalizations about twice a year. Caroline is brave. Braver than my six-foot-five husband, a former Cook County prosecutor, who likes to compare CGM insertions to Uma Thurman’s adrenaline shot to the heart in Pulp Fiction.

As parents of a Juvenile Diabetic, you ban slumber parties and sleepovers at cousins’ houses. You don’t hire a sitter, even a good one, and take a weekend away because you don’t trust anyone to monitor your child throughout the night. The stakes are too high. Too much insulin can cause a seizure, brain damage, or worse—dead in bed syndrome (caused by an inexplicable low blood sugar), a horror that is never uttered by Type 1 parents in the same way parents of newborns wouldn’t dare whisper SIDS.

But you do allow her to attend a week-long, Type 1 camp that’s only 40 minutes from home, particularly when her pediatric endocrinologist will be in residence the entire week. Charming log cabins, each filled with eight pancreatically challenged children, were kitted out with wooden bunk beds, cubbies, syringes, pump supplies, juice boxes, and two endocrine nurses apiece who’d monitor the children overnight. It was our yearly break.

One year, we dropped her at camp and went to dinner the night before I was going to join my husband on a business trip to Boston. We had just ordered when “UNKNOWN CALLER” appeared on my cell. It was the med staff. Her glucose crashed. Even with the best monitoring things can still go wrong after a particularly active day, “They don’t believe she lost consciousness and are monitoring for seizures.” Don’t believe?

We ran out of the restaurant like we were on fire.

On the way to pick her up we considered cancelling the trip. Should my husband go alone or stay to help me? I’d be fine, I promised. She’d be fine. I’ve got her. I’ve got this. She’s type 1. I’m type A. We got texts that she was now alert and back in normal range.

My husband and my other daughter were teary while we packed the car. As for me, I was as steady as a six-hour CGM reading of 90 milligrams per deciliter. The doctor said she would be fine, but Caroline was devastated. She would be missing the dance, the campfire, and the highlights of the week. Halfway home I announced a new plan. Dad wasn’t going to miss his work trip, and neither was I. Neither was Caroline. We would go to Boston together if she stabilized. I slept beside her that night and tested her hourly.

In Boston, we walked the Freedom Trail and sipped tea at the site of the Boston Tea Party. Afterwards, we went on a touristy, whale-watching boat tour. Caroline and I were holding hands when we were treated to a rare sighting of a mama humpback and her calf. I teared up, just a little. (I swear I never do.) But it was just so beautiful.

That night we went to a baseball game at Fenway Park. I told Caroline we arranged for the stadium to sing “Sweet Caroline” to her (wink, wink). She was mortified so I caved and explained that during Red Sox games it’s tradition that the ballpark sings the popular Neil Diamond song (also named after Caroline Kennedy) during the eighth inning.

I sobbed as all of Fenway sang to our daughter. Sweet Caroline. It is our anthem. It is our lullaby. It is our war cry.


Celeste Fisher is a writer working on her second book at Stanford University’s novel writing program. Her debut, The Book of Mary, is on submission. Celeste has worked for JDRF Juvenile Diabetes Research Foundation as both a volunteer and fundraiser. She is also certified with the State of Illinois as a Domestic Violence Advocate. Home base is suburban Chicago. Follow her on Instagram @celestefisherwrites