My daughter, husband, and I are walking against the flow of foot traffic coming into the Denver Children’s Hospital. We feel like the lucky salmon who successfully swim against the current as we escape the building and feel the heat of the sun on our faces. We have just finished a 4½-hour appointment with the eosinophilic disease team to discuss my daughter’s persistent abdominal pain and slow weight gain. While longer than most, this has been one of countless appointments over the past five years, and we will return next week for more tests.
My daughter is sick. Not in the gut-wrenching, unimaginable way of cancer, terminal illness, or rare genetic conditions, but rather in the annoying way. The way in which we can go for hours, sometimes days, without thinking about it, until she curls up on the couch and says, “My tummy hurts.” The way in which she takes three daily doses of medication that must be kept refrigerated. The way in which I am constantly reminded of the privilege of being able to attend to her illness.
That’s the thing about having a kinda-sick kid—my husband and I feel lucky. Lucky that when we pack an overnight bag, we’re going on an adventure, not another trip to the hospital. Lucky that our insurance has covered the battery of tests administered to our daughter over the past five years. Lucky that our kid, who is often in debilitating pain, didn’t have to go to day care when she was small. Lucky that we have the resources, financial and otherwise, to buy and prepare food for her restricted diet.
But realizing the privilege and luck of a situation can result in downplaying it. Yes, my daughter wakes up in pain a lot, but it could be much worse. Yes, her stomach hurts, but look at her—she looks healthy. It’s taken years for me to fully acknowledge my daughter is sick because so many children face situations far worse than hers. We exist in the awkward space between completely healthy and devastatingly ill.
We think her stomach pain began when she was 7 months old. It started as a dairy allergy but instead of revealing itself through hives or respiratory distress, it manifested as abdominal pain, which we failed to recognize for many months. What we did recognize was that our baby, who had slept from 8 p.m. to 8 a.m. since she was 3 months old, simply stopped sleeping. It wasn’t a sleep regression. She didn’t just wake up a few times a night. She almost literally didn’t sleep. From 7 months old until 21 months old, the longest stretch my daughter slept was two hours. Mostly, she would wake up every 20 minutes.
We also realized that a kid who is in pain is prone to paralyzing separation anxiety. Leaving her at the gym day care for even a half-hour was out of the question. Making it through a drop-off music class required her knowing—and confirming throughout—that I was sitting right outside the classroom door. Receiving a phone call less than two hours into a day of ski school, asking me to come pick her up because she had been crying since I dropped her off, wasn’t surprising.
Somewhere in the middle of the 14 months of no sleep, I began fantasizing about checking into a mental hospital. I longed to sleep undisturbed in a white room with thick cinderblock walls and a thin single mattress on a metal frame. I divulged this recurring fantasy to the therapist I had begun seeing. She told me that this exact desire, mental hospital and all, is common among sleep-deprived moms. I found this reassuring but also felt an increasing isolation within my social circle. I felt like the last student in a classroom working feverishly on a test, which I was destined to fail, while one by one the people around me got up, handed in their papers, and walked out, leaving behind the stress and anxiety of nighttime wakings and new-parent ineptitude. Intellectually, I knew that fears and confusion still existed in my parent-friend group, but those challenges seemed developmentally normal—they were strategizing to get their toddlers to stop biting, stop pushing, stop shouting. I was stuck in the newborn phase of figuring out how to achieve sleep with my daughter who was no longer a baby. My obsession with sleep, with trying to create conditions in which my daughter would sleep, dominated my family’s life. The stress led to tension and arguments between my husband and me as we tried to fix a situation far beyond our control.
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As soon as my daughter’s sleeplessness began, we sought counsel from medical professionals. Starting with our pediatrician, who berated us for letting our 7-month-old sleep in our bedroom, unswayed that we lived in a one-bedroom apartment at the time. We told her about our nights—how our daughter awoke again and again after only a few minutes of sleep, curled in the fetal position and crying—and she insisted that our daughter needed boundaries, needed to cry it out. My husband and I began seeing a couples therapist who echoed the pediatrician’s advice. She said that yes, eventually a doctor may find something wrong with our child, but we could fix the problem quicker by letting our daughter learn to self-soothe.
My husband and I vacillated between trusting our instincts that something was wrong and feeling like overreacting first-time parents. Around my daughter’s first birthday, we found a new pediatrician who believed our child’s sleeplessness was a symptom of a larger problem. We began to discuss the possibility of stomach pain. A gastroenterologist declared my daughter in perfect health and questioned reports from my husband and me of her nighttime behavior. An allergist was more encouraging. We eliminated dairy and eggs from my daughter’s diet and mine; six months later, with no obvious improvements, we eliminated wheat. Over the next six weeks, the number of times my daughter woke at night decreased. At almost 2 years old, she began sleeping through the night again. And I began sleeping through the night again.
But her stomach pain didn’t disappear; it shifted. She slept at night but stopped napping. As each day progressed, she would complain of pain. Despite the restricted diet, nearly every afternoon, she and I wound up reading curled up on the couch because she didn’t feel well enough to do anything else. We moved from picture books to chapter books. I read her Winnie-the-Pooh, Beezus and Ramona, the Tumtum and Nutmeg collection, the entire Ivy and Bean series. She would have me read these books over and over until she knew entire chapters by heart. We restricted her diet further with no improvements. More invasive procedures revealed that she had inflammation in her digestive track, treatable by medication.
It was just after her fourth birthday when, for the first time since she was a few months old, my daughter was pain-free more often than not.
It was then that I realized our family was far from where I thought we would be. Our lives had stalled, and all the things I expected to happen—having more kids, returning to the workforce, finding day cares and preschools where our children would flourish—hadn’t happened. I felt left behind as I looked around at our friends with two or three kids, with weekdays at work and weekend schedules full of preschooler birthday parties and soccer games. My husband and I pulled ashore all the questions bobbing in our minds since becoming parents. Did we want more children? A bigger place? My return to an office?
I realized then that over the previous few years, without my noticing it, the insecurities that plagued me during the sleepless nights had slowly morphed into confidence. If “normal” exists in parenting, we didn’t have it. Out of necessity, we’d eschewed most of the experts’ recommendations regarding routine, independence, discipline, screen time, and sleep. My daughter’s and my lives were spontaneous, determined not by work and school but by health. She had never been left with a babysitter; she had never spent a night in a crib. I nursed her until she was two. We co-slept for years. We opted for cuddles more often than timeouts, due to the connection I could see between her stomach pain and her tantrums. We didn’t have reward charts for compliant behavior; her treats came at the end of hourslong medical appointments and tests. When the pain was awful and we had already read books for hours, I’d let her binge-watch Daniel Tiger and Doc McStuffins. Late in toddlerhood, when her tummy hurt at bedtime, we’d take her for long drives into the foothills outside of Fort Collins and stay up late looking at the night sky. We did all of this not out of subscription to some pre-existing parenting philosophy, but because it worked. I was willing to try anything that had the potential to make life for her, for our family, easier.
When our lives did get easier, simply because my daughter felt better most of the time, what had seemed like missed milestones—growing our family, my returning to the workforce, finding the right preschool for our child—became opportunities. We missed the enrollment deadline for preschool. Choosing to forgo preschool entirely, my daughter and I got to ski together 45 days last season. She didn’t yet know her alphabet, but she did ski her first black diamond as a 4-year-old. Now she’s entered kindergarten and is flourishing as she learns the letters that make up the words of the many books whose characters became her friends over the long days spent reading on our couch.
We’ve learned as a family that there’s not only space but opportunity in things not going as planned. And I’ve learned not to parent out of fear of the future—fear of her getting hurt, fear of her making bad choices, fear of failing her as a mother—but to parent for the moment. Parenting on the edge of the unknown, on the edge of “things could be worse,” has given me a freedom I may not have otherwise realized.