the unruly pancreas

Chronic Illness Forced Me To Parent With Grace

Type 1 diabetes taught me things about being a human that now I am teaching my son.

by Hannah Matthews
Parenting & Disability

My biggest fear about becoming a mother was always destined to come true.

It wasn’t the fear that I wouldn’t do a good job, though I might have put it that way once. But that was before, before the pregnancy that demanded obsessive adherence to multiple medical and dietary protocols, precise self-administered doses of insulin, and the monitoring of constantly shifting blood sugar targets. And it was before I understood that a child is not a project on which we can be graded. A human being is not an assignment, a set of clear objectives, nor an exam I could ace if I just studied and prepared enough, pulled enough all-nighters with the gentle parenting PDFs and the potty-training strategies. I realize now my fear was not that I wouldn’t be a good mother. It’s that I wouldn’t be a perfect one.

All parents, and particularly those of us who’ve been socialized to see parenthood and caretaking as a calling and an identity, are familiar with the constant accounting of our own shortcomings, the unfunny blooper reels that play on a loop in our minds. I should have packed his green coat; it’s colder than I thought. Why didn’t I take his temperature sooner? I was so distracted and busy today, I feel like I wasn’t fully present with him at all. Why did I use that word on the phone in front of him? I said I would never use that word around my kids. Or be on my phone.

Even in chronic illness and disability, we spin narratives of personal responsibility, productivity, perfection.

Well, guess what? I have also said that I’d send thank you notes in a timely manner, that my car would be clean, and I’d live within a budget, and I’d respond to emails promptly, and I’d always cook balanced meals for my family. I said I’d dress nicely, or at least in clothing that fits my body and isn’t decorated with smears of baby food and breast milk, and that I’d brush my hair before leaving the house. I’ve also said or assumed — consciously or not — that I’d always be “healthy.” I didn’t understand.

Now, here we are in a future that looks nothing like what I would have described. My baby is perfectly imperfect, as all babies are, and I am perfectly imperfect as all babies grow up to be, even and especially when they go on to have their own babies. When I struggle to buckle my baby into his car seat correctly, I see him watching my face, so I put a big smile on it. “Oops, silly Mama!” I say, shrugging my shoulders. He bursts out laughing, his eyes full of wonder and his gummy grin huge. I keep repeating it, the pitch of my voice getting higher and higher as my desperation increases. My son laughs and laughs, all gums and drool and the best sound I’ve ever heard in my life, and finally the buckle clicks into place.

Later, we settle into the dog-hair-covered couch to read a book together before his nap, time I should spend working or tidying the house or exercising but will instead spend horizontal and scrolling on my phone as I half-watch Love Is Blind. As my son impatiently taps the page of the board book, frantically signing “More” and “Go” because I have stopped reading, I fumble with my insulin pump, its low blood sugar alarm ringing over his protests. Overstimulated and overwhelmed, I force myself to take a deep breath. I show him the injection site where the pump’s tubing emerges from my skin, and how I must disconnect the tiny needle now.

“Oops!” I say, eliciting that manic and miraculous little laugh. “Silly Mama’s body!” He agrees, so silly. Mama’s body has made yet another of its frequent and hilarious mistakes.

My baby turns 2, knocks sh*t off coffee tables and store displays, drops his mittens in mud puddles. He almost makes it to the potty but pees on the tile instead. He falls down; he collects cuts and scrapes and bruises and fevers and runny noses. He meets some milestones early; others quite late. He doesn’t feel well, has a cough, and just signs “hug” and “sleep” and “home” over and over again on a day when we’ve planned to run errands and see friends and be out in the world. So we cancel everything, and I nearly throw my back out carrying his 30-pound body around the house. He is listening to his body, and I am listening to him.

Mistakes — made by us, made by those we love, made by our bodies — are sewn into the fabric of our messy and colorful human lives.

When I was diagnosed with Type 1 diabetes, at the ripe old age of 31, my sense of personal failure was deep. The removal of my body from the “healthy” category was a shock; now it bore a label synonymous, in our culture, with the consumption of “junk food,” with “lifestyle choices,” and with — worst of all in the eyes of many — fatness. Never mind that most of these stigmatizing misconceptions are applied, still inaccurately, to Type 2 diabetes, and that Type 1 is a separate illness.

I hang a banner in his room, letters hand-cut from children’s book illustrations:

“MAKE MISTAKES” reads the first row of letters, slung across the wall above his changing table and dresser full of tiny secondhand clothes, replete with stains and holes from the misadventures of other families, other kids’ tumbles and spills. The second row of letters reads “KEEP GOING.”

Even in chronic illness and disability, we spin narratives of personal responsibility, productivity, perfection. The doctors and nurses of my local hospital’s emergency department gave me many bedside pep talks as I recovered from the hyperglycemia that had landed me in their care (and in this new category, sick and disabled, for the rest of my life). Most of them focused on my future accomplishments, on “living a normal life,” whatever that means. There are Olympic athletes with Type 1 diabetes! There are famous and successful diabetic actors and pop stars! If I had any limitations, in other words, any places in my life in which I fell short of perfection or left goals unmet, finish lines un-crossed, well, that was my fault. If I didn’t overcome my disease, push through, do everything as if I were 100% abled and healthy — a status that virtually no one’s body can achieve at all ages and stages of their life — that was a failure of mine, to be counted and played on the shame loop, the guilt montage set to a sad-sack playlist that never ends.

I never want these loops to play in my child’s head. I want him to be thoughtful and kind, to understand his responsibility to other human beings, and to accurately assess the stakes of bringing a human being into the world and then keeping them safe and protecting their joy and autonomy as they grow up. I want him to commit to things and work and create in ways that bring him, and others, joy and love. But I never want his (inevitable and frequent) failures, real or perceived, to feel abnormal, unacceptable, intolerable.

Mistakes — made by us, made by those we love, made by our bodies — are sewn into the fabric of our messy and colorful human lives, no matter what, from the very beginning to the very end. Something I failed (there’s another one!) to learn from my own childhood, from school, from marriage, from work and art and friendship and therapy and eating disorder treatment and writing a whole-*ss imperfect book. Something only my two cruelest and most unpredictable coaches — parenthood and diabetes — could teach me.

His birth, for example, was rife with the dreaded “interventions”: an induction at 37 weeks, various pain medications, a C-section. I fed him with formula, after four months of desperately trying to make breastfeeding work, pumping and triple-feeding and using expensive donor milk and being manhandled by lactation consultants who weighed my baby, watched me nurse him, and then weighed him again and reported, to the milliliter, the amount of his intake — a protocol that horrified my therapist so deeply, when I described it to her later, that she was rendered speechless for a minute, before stammering, “They… they what? Every time you go?”

Potty training, a speech delay, separation anxiety, adjustment periods, and growing pains and nothing linear or perfectible. A human being with a silly, flawed, sometimes sick and maybe-someday-disabled body and mind.

Recently, I’ve been struggling to manage my illness. I no longer feel the pressure to do a perfect job at being healthy. That psychological ship sailed shortly after my pancreas died, long before my son was born. But I feel that same old pull toward a new and different form of perfection: a constant pressure to do a perfect job at being sick. Especially now, when what happens in and to my body, and how I think and speak about it, so deeply affects someone else. But I never want to tell a one-dimensionally sunny success story or model for my child an inability or unwillingness to express my fear or grief or anger. I’m not an I Don’t Know How She Does It picture of strength and resilience in the face of hardship. And nor should he or anyone ever strive to be. It’s dishonest.

So, sometimes, I’ve been choosing not to do a perfect job. I eat the pizza that I know will send my blood sugar into the red; I drink the red wine that will require snacks to avert a plunge. When I have a spare 30 minutes, I scroll TikTok instead of jogging or calling my health insurance company to follow up, once again, on the prior authorization delaying a prescription I know my body needs. I don’t eat wild-caught salmon or drink hot lemon-water first thing in the morning. I over- and undercalculate my insulin dosages; I’m sloppy with the carbohydrate math I must do before every meal or snack or beverage. I call out sick, and bail on plans, and listen to my body when it asks for rest. I don’t use the word lazy — about myself or anyone else.

So my son, now 2, sees me mess up, fall down, get back up again. He watches me make my mistakes, and he sees that I watch him make his. “Oops! Silly Mama” still makes him laugh and laugh, if he’s in the right mood and I hit the right sing-songy notes. And he keeps reaching his little hand up for mine, again and again, so that together we can keep going.

Hannah Matthews is a journalist, essayist, doula and abortion care worker. Her book about abortion, You Or Someone You Love, is out now from Atria/Simon & Schuster. Her work has appeared in TIME, ELLE, Esquire, Teen Vogue, Catapult, Electric Literature, McSweeney's, and many other publications. She has written for Romper about how donations to abortion funds save lives, an all-trimester abortion clinic, and how abortion takes a village too. Follow her on Twitter, subscribe to her newsletter of abortion love letters, or visit her website for more information.