Kathryn Satterfield
Rare
You find the old man hunched over your baby in the semi-darkness of the neonatal intensive care unit. A chorus of beeps and blips serenade them, this man and boy. The hospital hums, quieter now that it is evening.
“He’s so alert,” the old man says, peering into your baby’s face. His voice is filled with awe. He is not unkind, this old man. It is not his fault he doesn’t know why your baby is struggling to breathe.
The old man picks up a tiny foot, runs his finger along the extra pads of skin at the tips of your baby’s toes. They’re shaped like miniature lightbulbs.
“This is how we knew he was different,” the old man says. “And his fingers.”
Your baby doesn’t clench his hands into fists like typical newborns. You see the miniature bulbs of skin on his fingertips too, unlit beacons. Signaling what? The experts can’t be sure.
The old man is part of a team of experts. They wear white lab coats and meet in doorways. They talk in hushed tones and gesture over clipboards. They use words you don’t understand: micrognathia, hypotonia, genetic anomaly, fish analysis.
The tall one with a lazy eye stands in the doorway of your hospital room. He tells you about chromosomes and things going awry. Does he use that word, awry? You watch his mouth move but your mind can’t follow. He gives you forms to sign and so you do. Something about testing your baby.
That night you fade in and out of consciousness. Shadowy figures come and go. They peel away your bandage and peer at the angry red stitching. You’ll barely have a scar, one says. You wake to a Code Blue, a disembodied voice calmly calling for help in the NICU. You have no way of knowing but you do: Your baby is in distress.
The next morning you visit your baby. He looks flattened. A web of miniature wires snake from his tiny fingers and toes, connecting him to flashing monitors. You reach for his helpless body. “Don’t touch him!” a nurse yells. Startled, you draw your hands back, clasp them together over your empty belly, which is deflating like an old beach ball. He had a bad night, someone says. We just stabilized him.
Your baby is having trouble breathing. They intubate him, and the tube presses against his vocal cords so he cries without sound. You watch him scream silently, face contorted and red, and the ache inside you grows.
The experts don’t know why your baby can’t breathe on his own. They tell you they need to send him away; there is another expert in another hospital 17 miles away who might have the answer. They put him in a big plexiglass box on wheels and while the ambulance waits, you say your goodbyes. Your baby looks impossibly small and pale, except for his face, which is red from silent crying. You fight the urge to hurl your body at the box where your baby lies.
The tests don’t tell them anything except that your baby is rare. What should I do? you ask the men in white coats. Go home and love your baby they say. The task seems insurmountable.
Your baby’s breathing problems subside. The doctors blame your long labor, his difficult birth. You know you should be relieved and you are, but his rare chromosome abnormality comes with more questions than answers.
At home, you cradle the baby in your arms. He latches to your breast and you sit together like that until he falls asleep. Eyes wet, you realize you’ve been crying. Your dreams of who he would become seem foolish now. Star soccer player, gifted writer, all seem out of reach. You know he’s supposed to become something, this baby, but you’re not sure what that something is.
You sit in the rocker by the window, listening to your baby breathe. The magnolia tree spreads its branches wide. You watch as dusk descends from the heavens. If there is a God, you think, he must be punishing me.
You’re not alone, not physically, at least. Your husband and parents hover on the edges of your days. The baby needs your milk. Your comfort. He knows your smell. Your voice.
After everyone goes to bed, you spend nights in the darkened house hunched over your laptop. Rare physical deformities flash across the screen as you search for others like your baby. You pore over lists telling you what a baby should do and when: hold his head up, 2 months; roll over, 4 months; babble, 5 months; crawl, 7 to 12 months. You wonder if your baby will do any of these.
When you sleep, it’s deep and dreamless. The nightmares come for you in daylight. You imagine smothering your baby. You wonder how many pills it takes to kill a woman your size. You weep silently, a body collapsing in on itself.
Early intervention therapists come in and out of your home, showing you how to play with your baby to help his development. One says she would love to see an X-Ray of his hands. You plead with them to tell you who he will become, but they scribble in their notebooks or turn away.
You sit with your baby on your bed skin to skin, like they told you to do. He is soft, almost slippery. You listen to him breathe into your chest. The shades drawn, in the semi-darkness you imagine smothering him. It would be so easy; no one would have to know. Then, you could start again. But you would know, and this knowing would follow you for all your days.
Friends visit. You arrange your mouth into a smile even as the grief swells inside you. In quiet moments alone with your baby, you study the features that make him rare: the tiny bulbs on his fingers and toes. The deep crease between his thumb and forefinger. The sharp outward curve of his left ear. You see your imperfect signature in every anomaly.
At night, holding your baby by the window next to the magnolia tree, you wonder what mothering this baby will require. You dismantle your life in your mind, casting backward for how you might undo this warped version of new motherhood. Your mind spins and spins, looking for a way to begin again.
Kathryn Satterfield is an affiliate of Amherst Writers & Artists. She is a graduate student in the M.F.A. Writing program at Bennington College in Vermont. Kathryn worked for many years in kids’ educational publishing, as a writer and editor for React magazine and TIME Magazine for Kids. She is currently working on a memoir on raising a son with an extremely rare chromosome abnormality.