The RNA molecule that causes COVID-19 contains just 15 genes and is responsible for shutting down schools, businesses, weddings, funerals. That our lives could get thrown upside down by something so small seems absurd. But I’m accustomed to my world getting upended by a handful of genes. Eight years ago this spring, I was told my nine-month-old baby would maybe walk someday or maybe not. She might talk someday, or she might not. My daughter has Wolf-Hirschhorn syndrome, a rare condition caused by a genetic deletion in her fourth chromosome, a nonhereditary, could-happen-to-anybody hiccup at the cellular level. In raising her, I’ve learned to embrace uncertainty. And now I notice it in everything. As the pandemic overturns what we thought we knew about our future, we are invited to surrender to a life free of expectations.
Because my daughter is missing just a sliver of genes, she doesn’t follow the typical developmental trajectory, as mapped by pediatricians and what-to-expect websites. When she was an infant, my husband and I were told her brain was at risk of seizing, her lungs could aspirate, and her kidneys might fail. Her chances of walking were about 50 percent, and the odds of her feeding herself were 10 percent. She would likely never live on her own.
I knew none of this when I was pregnant. When she was flipping in my uterus, I wondered with detached curiosity whether she was a boy or girl. Never did I ask myself, Hmm, will my baby be one of those solid-food-chewing people, or get meals through a handy tube? Will she walk or use a wheelchair? I had banked on my daughter’s ability to walk, talk in full sentences, and one day live independently. I didn’t just believe she’d be capable of these things. In my mind, they were facts, no more pliable than a plank of wood.
In January 2020, we all thought we knew certain things about what the year would bring. We saw meetings, trips, graduations, haircuts, and paydays across our calendar squares. We eyed church events, birthday parties, and minor surgeries on our horizons. We could look ahead at our life, and, like a pediatrician scanning a developmental chart, make predictions. The school year would end with an in-class farewell, the bus would take us to our retail job, the big project would culminate in a presentation in June, and the summer tourists would soon be peering into shops on Main Street.
Now the only thing that’s following a predictable pattern is what grows in the ground. In the mid-Atlantic, where I live, the daffodils have pushed through the soil. The bare oaks are bursting into canopies. Spring came. What we expected of our lives did not.
Our rupturing world brings me back to my first year with my daughter. I would never want to relive that year, and yet I would never give it back. During that time, I watched a nurse try to thread a too-big tube through my baby’s urethra. I listened as a geneticist told me that my daughter could slowly choke on her own saliva. I held my baby’s thrashing body as a doctor snaked a black tube up her nose and down her throat. When she had a grand mal seizure, I watched her lips turn blue.
In the daylight, I stimulated her nervous system with plastic rings and chirpy songs, coaxed her through hours of tummy time, and drove her weekly to a feeding therapist so she’d maybe learn to swallow solid foods. In the dark nights of nursing her, I wondered what her life would be, and I worried about what her body would need.
And yet this fragility unearthed an aching tenderness inside me, deep in my heart, beneath my ribs, under my previously held beliefs about what’s important, and what makes life worth living. I had never before felt so close to a core truth of life: Everything is transitory. Nothing is certain.
I fiercely loved a baby I could lose in a number of horrifying ways. But the tenderness I felt offered up its own wisdom. Don’t squander this, it said. You want with all your might to wish this away. But there is something vital here, in all this unknown. It will teach you why you are truly alive. I learned that uncertainty was not unyielding. It was instead something I could fall into, and be held by. I could surrender to it.
Before I had my daughter, I thought I was alive to be perfect, to achieve awards, accolades, victories. And then I was stripped bare when I had a beautiful child who would never breeze past developmental milestones. It would be a huge feat if she could learn to chew her food.
The day she put chili into her mouth with a plastic baby spoon, my husband took a video. She was three. Beans dripped down her chin, and we hurrahed. Triumph was eating and breathing. Triumph was living and rejoicing. There was nothing quotidian about any inhalation. We are alive, I realized, to receive each moment for what it is: a monumental gift.
We are all leveled by times of upheaval. I was when my daughter was born, and I suspect most of us are now, during the pandemic. This is our lot right now. This not knowing whose body will handle the tiny package of genes and whose body won’t. This sheltering in place. Or, depending on where we are, this opening things up at great risk. In this state of uncertainty, we are awestruck by our smallness and humbled by our inability to control anything. And some of us might feel only grief. But we are also poised for awakenings. We can realize the relative weightlessness of the things our egos once believed we needed. And we can become attuned to the gifts of our life, these millions of breaths we never could count on.
Near bedtime, after scrolling through the day’s pandemic news, I feel again the tenderness in my chest, hear again the small voice I heard eight years ago: Don’t squander this. Let it make you more tender. Let it rewrite what matters. Let it bring you closer to all you love, to all you could lose. Let it bring you to your knees.
Recently, my daughter was pacing the kitchen on a morning she’d normally be in school with her classmates, her special educator, her speech therapist, and her aide. She was tapping her right hand into her left, as is her habit, and asking me on repeat, “What are we doing?”
What are we doing? We’re trying to recover, collectively, globally, from something 100 nanometers in size.
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