I Didn’t Know I Could Feel So Tired
My daughter’s rare condition means she almost never sleeps through the night. But for years, I blamed my parenting.
I can count on two hands the number of times my daughter has slept through the night since she was born nearly nine years ago. The day I brought her home from the hospital, I laid her down for a nap, tightly swaddled the way I’d been taught. She dozed off quickly, but a few minutes later, she began to cry. I checked her diaper, offered milk, and rocked her, but nothing worked. She cried harder, arching her back and wagging the fragile egg of her head to and fro. This went on for an agonizing 20 minutes, until abruptly her eyes fluttered open and the crying stopped. She yawned, stretched, and then drifted back into a peaceful rest.
An hour later, she stirred again. And then again and again, every hour, for the first three months of her life.
Friends told me to sleep when the baby sleeps. But what do you do if your baby is forever waking up? At eight weeks postpartum, mothers who exhibit symptoms of major depression are more likely than other mothers to report that their babies wake three times or more each night. At eight weeks postpartum, my daughter was waking more than five times each night. Yet it didn’t occur to me that something might be wrong. I was tired, but all mothers are tired. We are expected to know how to do it all—relationships, careers, homemaking, hobbies—but especially parenting, as though good parenting is biologically encoded in a mother’s DNA. At the bare minimum, we are expected to know how to soothe our children to sleep. So when something goes wrong, the first thing many of us do is blame ourselves.
An entire industry feeds off mothers’ guilt and exhaustion. Parents cumulatively spend upwards of $300 million a year on sleep-related products and devices for their kids. They are exposed to articles and best-selling books purporting to offer surefire fixes. I’ve tried them all: co-sleeping, sleep-training, melatonin, weighted blankets, white noise, blackout shades, nightlights, open doors, closed doors, warm baths, cold rooms, elimination diets, essential oils, crystals. I’ve explained this to other parents and still received doubting looks. “You must not have …,” someone would start. “You probably haven’t …”
The terrible truth is that some children cannot stay asleep. For many, the issue is not behavioral; it’s medical. Two to 4 percent of children have restless legs syndrome, which can make it difficult to settle the body for bed; 20 percent of 5-year-olds struggle with bed-wetting; 3 to 6 percent of children have obstructive sleep apnea; nearly 12 percent experience night sweats. And up to half of all children—including, as it would turn out, my daughter—experience some form of parasomnia like night terrors or sleepwalking.
My daughter wouldn’t receive her diagnosis until she turned 5. By the time she was 3, I’d already spent hundreds of dollars on books and apparatuses and experts, and still she woke up five or six times a night, wailing like an injured animal. When I tried to comfort her, it was as though she couldn’t hear me. Her body contorted, seizurelike, although my husband—a physician who worked brutal hours, including overnights—assured me that she wasn’t seizing. These episodes lasted anywhere from 15 to 90 minutes and recurred throughout the night. In the mornings, she woke well rested, and remembered nothing.
But for me, the episodes were physically and psychically exhausting. I missed deadlines at work. I got pregnant again and was so deboned with fatigue after my son was born, I nearly lost my job. I felt as though I was living in a dark ooze, except the ooze was my daughter’s fourth-birthday party, or New Year’s Eve, or a Tuesday. I fell asleep making dinner. I struggled to keep my eyes open while driving, so more and more, I found myself marooned at home. I lost my keys, the bills, my friends, my body. I felt like I was losing my mind.
Sleep deprivation wreaks havoc on the body. It decimates your ability to focus. Your inhibitions fall away, making it more difficult to discern what is or is not appropriate behavior. Your risk of being involved in a car accident increases. Your working memory disintegrates—which, for me, meant forgetting names and appointments, or why I had come upstairs. The fogginess and lack of coordination often described by new parents is not just “mom brain.”
Over time, the consequences steepen. A long-term sleep deficit can inflame the body, weakening the immune system and increasing the risk of morbidity. You are likely to gain weight. The risk of cardiovascular disease, diabetes, and a host of cancerous tumors can increase. Your blood pressure climbs.
I held myself together until my daughter was almost 5. Then I fell apart. One night, while my husband was stuck at the hospital, she had a full-blown episode—hours of kicking, crying, and clenching and unclenching her muscles. “Tell me what’s wrong,” I begged, the gravel of her screams scraping against my skin. But she ignored me.
Everything I had read told me that if I were a better mother, my daughter would be a better sleeper. I spent years blaming myself. And then, that desperate night, after I’d gained so much weight and lost so much hair, as my body shook from the pain of staying awake, the rope of my patience unraveled, and I blamed her.
Delirious, I leaned into her tear-stained face and emptied my lungs like a hurricane. “Stop it,” I screamed. “Stop crying. Just stop it, stop it, stop it! Shut up and go to sleep!” I balled my fists and pounded my frustration into the floor. My daughter did not sit up in fright. She did not react at all. She continued to writhe like a demon wrapped in a child’s nightgown, as though I weren’t there.
The next morning, she remembered nothing. Not the lightning of my voice. Not the thunder of my fists. Not being tucked into bed hours later and kissed on the forehead.
I stopped caring what the books and blogs had to say. I ignored my friends and family and called our pediatrician, who had been sympathetic in the past, and demanded a referral to a specialist I had found through my own research. I told her we could not live like this.
A few months later, after a sleep study and a visit to a well-known pediatric neurologist, we received a diagnosis. Our daughter was experiencing confusional arousals, a sleep disorder caused by a schism between sleeping and waking. During deep sleep, people with this disorder wake up, but only partially. This puts them in an awake-asleep state characterized by behavior including crying, squirming, bed-wetting, unresponsiveness to external stimuli such as a parent’s voice, and, upon waking, a complete lack of recollection.
My daughter’s episodes were not anyone’s fault. She has a severe presentation of a common neurological disorder. About 17 percent of children ages 3 to 13 are eventually diagnosed with confusional arousals. And some researchers suspect that sleep disorders are underdiagnosed in children, compared with behavioral conditions such as ADHD and medical ones such as asthma. Confusional arousals are easy to conflate with typical nighttime wake-ups, especially in infants.
Yet when I asked what to do next, the neurologist told me, “There’s nothing you can do.” She explained the few interventions we could try to mitigate our daughter’s symptoms, but there is no known cure. In most cases, the condition resolves on its own before adulthood. Until then, she acknowledged, parents are just very, very tired.
I didn't realize a person could feel so tired. My daughter turned 6, and then 7. Overcome by depression and unable to focus, I was able to work only part-time. Still, the diagnosis came as a relief. Nothing changed with my daughter’s condition, but by the time she turned 8, something had shifted in me. I guided her through the episodes, but without fear or bitterness. I came to see that my daughter did not need fixing. She was a creative, kind, affectionate, tree-climbing delight. Some children simply require more of us.
I found mothers in similar situations, and we carried one another through the toughest days. I moderated the depression with medication. I fought the sluggishness and brain fog with a modified diet and regular exercise. I meditated with an app on my phone. When nothing else worked, I ate chocolate. Once or twice a week, as his hours allowed, my husband tended our daughter, and I slept. Sometimes all of this was enough to keep the balls in the air. Sometimes we dropped every single one.
My daughter is almost 9 now, and continues to rouse through the night. I am perpetually uncoordinated and covered in bruises. I trip and fall and lose my phone. I am cold all the time—another quirk of my sleep-deprived body. I know my health has suffered. But every morning, I climb out of bed. I brush my teeth and get dressed. I put one foot in front of the other.
There is no sunny end to this tunnel. There is no tunnel. There is this life, my one exquisite life. There is my daughter. And there is my love for her, unbounded.