The everyday, lately, has been uneven. Our house lost power. The dog injured her leg. My husband has shingles. My employer is bankrupt. My father-in-law tore his aorta. And yet the everyday is still there. Oatmeal, tennis balls, Elephant & Piggie. I am fixated on presence, on the quiet moments between the doing. The dog pressed heavy with sleep against my shin while I write. The coffee cold with too much milk. The uneven echo of my older son dribbling a basketball in the driveway.
I am a neonatologist, and at work I care, mostly, for unexpectedly ill infants. The last several weeks, I have bonded with one. Unlike so many of my patients, he is maturing, developing as any baby should. He reaches out for his nurses, fusses when he isn’t bounced. He likes to be held by the blind volunteer who is escorted from one infant to the next by old women with canes. Unlike many of his hospitalized peers, he looks like a baby. He is not dependent on machines to do his living. He is not swollen. His organs are all on the inside. He is in our NICU because his body is congenitally unbalanced, uneven in its own way. I spend hours on government-funded search engines rephrasing his symptoms, struggling to understand his diagnosis. Medicine is an unending quest to parse, label, assign root cause. Dozens of doctors chase a reason for his illness. But right now, we have no reason, no answer.
Last night, there was a thunderstorm. My husband stood, shirtless and solid, on the porch, unmarked by the wind thrusting itself into the spaces between leaves and fingers. Sometimes, in a storm like this, he runs topless with our sons in the yard, the heavy wetness rolling over skin, splashing between toes. Giggles, smiles, mud. But last night, with the rash raging across his chest, he was more cautious. My younger son sat on his lap and together they watched curls of water roll down the road. Rivulets, my husband taught him. After they came inside for bed, because the world is unbalanced, gravity and wind and the weight of water combined, a limb fell on the roof of our house.
It is not my patient but his mother, truly, who captivates me. She is a teenager in foster care. I sit with this mother every afternoon. I try to propel her forward, try to focus her on the long-term and less on the now. For weeks, we plan her life around the care of her child. We talk about medical daycare, home nursing agencies, college. She has a full scholarship to a nationally known university. She just has to go. But going is complicated by her child. I want her to rise up, thrive, control her own path. She has dreams, knows what she wants to be. She smiles wide when she articulates her future title. But then she reads negative online reviews of medical daycares to me. Director is rude. Unprofessional staffing. My child got sick. Her hesitation is not subtle. What I think I hear her saying is adults failed me; they will not fail my child. What I am learning to tell her is that she cannot care for him alone, that motherhood is a leap of faith. She looks at me with sass, as if to say that her own version of motherhood is already corrupted by her son’s illness. I nod. But then, because I need my own conscience absolved, I tell her a hard truth: college or no college, she will have to trust someone else to love him too.
My older son is away when the limb falls. This is my own first, trusting unknown young adults to guide him through the wilderness, without me, overnight. Camping. He will come home and the limb will be gone. He will tell us about fox dens behind porta-potties and teach his brother a song about dirty black socks. He will have jumped off a raft into a river in the same storm that felled our tree; sneakers heavy with damp, smelling of gritty sulfur. He will burp constantly because he can. He will not ask me to tuck him in so he is comfyfied his first night home, newly grown up, because his world is even with goodness.
There are Latin names, none of which imply goodness, for my patient’s problems, but I talk to his parents about brains and eyes and bones. I explain the what, because we do not know the why. His illness is not one big storm but a lifelong climate anomaly. I use words like blind and every day so his family can understand that his needs are lifelong. I emphasize that he could die without his medicines. I say things like forever.
After the tree fell, the storm stopped abruptly. We crept out to see the damage. And then, because we do not own chain saws or hard hats, we left it there. Our insult exposed to the world. We went to bed and slept, our own limbs entangled and glistening in the sweat that pools under blankets, until my younger son woke up vomiting. He lay beside me wiggling in the dark. My tummy hurts, was all he could say. The weight of his head on my arm, his breath on my cheek, his belly gurgling below our blanket kept me conscious, present, for hours.
I think about her, this young mother, while I comfort my own son through his pain. What she knows without having to say so, what she taught me, is that some things just happen. Sometimes parents beat their daughters. Sometimes boyfriends are arrested. Sometimes adults lack answers. Sometimes children are raped, or starved, or ignored. Sometimes children are born sick. What she didn’t ask, not once, is why. Why is her child incurably ill? I tell her that her son needs daily shots. Okay, she says. She learns to stab an orange. Then her baby needs a surgery. Get it done, she insists. She moves forward with the daily doing, with the surviving. When can I take my baby to the park? When can he swim? Living is how she rebels, how she heals.
This morning, five men in two trucks came to heal our home. They declined a pot of coffee and methodically deconstructed the oak limb. Gravity fought them, pulled leaves out of place, tugged acorns to the ground, snapped twigs to form pointy ends. The men shoved the fallen branches through the chipper. Right there, in the street. From a solid insult to sawdust that slips evenly between fingers, blows away, dissipates into dust. Watching, I thought about this young woman and how she showed me, through the vantage of her life, to turn misfortune into sawdust. She will take her son home from the hospital, chemically regulated and smiling, with a firm maybe about college in January. And I will see my own everyday narrated through the lens of her tenacity.