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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.
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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.