Learning to think and act like a pancreas was a learning curve for my parents, but passing along the torch of care to me was another journey entirely. Growing up as a kid with diabetes, my need and instinctual inclination toward independence served me well, but taking full responsibility for my diabetes management was a long and piecemeal process. Drawing up and administering my own injections was a huge step forward, as was checking my blood sugar and making decisions on how to act on the number on the meter. Driving was also a big step toward independence and diabetes self-management for me and for my parents.
My mother concurred. “Driving was a huge turning point. It was a reward for being conscientious about diabetes. It wasn’t just for your sake, but for the sake of everyone else on the road. The point was, you had this disease and you had to own it. If you didn’t check before driving, then we weren’t going to let you drive. You don’t punish for diabetes, you punish for irresponsibility. Diabetes just happens to be an example of something to be irresponsible with.”
My mother always protected me. She and my father tried so hard and, in retrospect, I can’t imagine what it was like for them to raise a child with diabetes. If tight control is a guilt-inducing component for the person with diabetes, the guilt of the parent must have the potential to be suffocating. I love my parents and believe that the reason I am secure in myself is because they instilled me with the confidence that, no matter what, my life would be good. I would come to the very end and feel like I hadn’t missed a damn thing.
We didn’t fight about the things my friends fought their parents over, but so many arguments were had around diabetes. My friends fought with their parents and compared battle stories over sandwiches their mothers had made them for lunch, but I never shared my tales. How was I supposed to explain to my classmates that my mother and I had a huge screaming match over my blood sugar of 385 mg/dL? How to describe the guilt I felt for eating those cupcakes and how she found the wrapper, but I refused to fess up?
“Just admit that you ate it! just admit it!”
Defiant, I crossed my arms over my chest and stared back at her. “No! I didn’t eat it!” The last bitter tastes of chocolate in my mouth stung like bees.
“Kerri, I know you did! You did! I found the wrapper!” She held it over her head triumphantly. “I found it and you ‘re lying! We work so hard at this—you need to be more careful.”
“We? We work so hard?” I started to cry but held it in as best I could and shot her a steely glance. “You don’t do anything. Diabetes is my disease.”
Frustrated, under-appreciated, and heartbroken, my mother reeled back her foot and kicked the thing closest to her—a blue plastic bin that held my shoes underneath the bed. Her foot went through the side and left a gaping hole.
I gasped. Mom wasn’t one for violence. She never spanked us. Maybe she should have, but she didn’t. She gasped, too. Her foot was stuck in the wall of the blue bin and she had to lean over to wrestle it free.
“I don’t do this to hurt you,” she said quietly, still working to free her ankle. “I know it’s not my disease. I just wish it wasn’t yours.”
We stared at each other for a minute.
“I ate the cupcakes.”
“I know you did.”
“And I don’t care that I’m high.”
Sigh. “I wish you did.”
She stood thoughtfully for a minute, and then tossed the cupcake wrapper into my trash can. The crinkle of cellophane was the soundtrack of my guilt.
“For now, I’ll care enough for us both.”
Another battle ended. Too hard to explain to my friends. So while they complained about breaking curfew and arguing about which boys they were allowed to date, I kept the confrontations between my mother and me private. We were fighting about what foods I was allowed to eat. But at the same time, we were fighting for my life. Passing that torch of care from her to me was one of the toughest transitions in my life with diabetes.
But, it made us close. Close in ways that mothers and daughters might not often be close. As their children, we understand on some level how hard they worked to care for us for the nine months before we came crashing into this world. But living every day watching her try to keep me safest and healthiest, it tethered me like an emotional umbilical cord. Even now, as I live states away and she’s not the keeper of my diabetes management anymore, if I don’t answer the phone in the morning, she worries. She always worries, some times more quietly than others and sometimes bravely out loud.
“You have to stop being afraid of letting them [children with diabetes] have some control. Because you can’t control it, or them, forever,” Debbe said. “It has to be a gradual process. It scares you, but it’s their life, and eventually you have to let them decide the quality of their own life. We didn’t want your life to be so safe that it was boring. You have diabetes, but you still get to live. And, as your mom, I had to trust that you could do this. I had to trust you, and trust that I did my best. So I had to let you go.”
I don’t have a clear recollection of life immediately after diagnosis, but I know back in 1986, food choices ruled the roosts of diabetes households. Once the vials of insulin moved into our refrigerator’s butter compartment, gone were the Twinkies and Ring Dings and Yodels (and other snack foods comprised of a half gram of actual nutrients and then a whole pile of rubbish). Our eating patterns changed as a family, and Diet Pepsi and food scales replaced the snack cupboard of days gone by. My mother hid the ice cream sandwiches in the hollowed-out box of broccoli in the freezer. She had packages of E.L. Fudge cookies hidden between the sweaters stacked in her closet. She was a food-hoarding squirrel, with delicious treats in every obscure corner.
I viewed this as a clever approach that removed a lot of temptation (and also presented some very furtive treasure hunts with tasty rewards), and one that helped to keep me safe and healthy. But for my brother and sister, both with perfectly capable pancreases, the lifestyle change wasn’t necessary. Didn’t they get to have snacks, still? (My brother confirmed that he, too, was searching for the “good snacks” after my diagnosis. “I had to look in the freezer for cookies and above the broom closet for the special sugary cereals,” he said.)
What I failed to realize then is that my diabetes didn’t have to be my siblings’ diabetes. There was so much about their lives as the siblings of a child with diabetes that I couldn’t even wrap my head around. I didn’t know what it was like to have your sister come home from the hospital, now playing host to something no one could see, and garner so much attention (for better or for worse). I’ve talked to some siblings of kids with diabetes and heard about the guilt. “I felt bad for wishing I was sick, too, because I was jealous of the attention.” Or the worry. “Was I going to get diabetes, too?” Or the anger. “I am sick of her diabetes being the sole focus of our family.” Or, just plain fear. “Will diabetes hurt my sibling?”
My brother, Darrell, was 13 when I was diagnosed with diabetes, and old enough to remember some of the details that I can’t recall. “I remember Dr. L [our pediatrician] coming out of his office, the one with the patterned wallpaper that had giraffes and monkeys on it, and he was holding a little plastic cup with what was your urine sample. We had both gone for checkups on the same day. He told Mom that he wanted to do some additional testing for you, so Mom dropped me off at soccer practice and proceeded to take you somewhere for tests.
“I remember being picked up from