92. Gift of the Surprise Diagnosis

When I get pregnant for the first time, I cultivate a dreamy, earth mama Disney fantasy. The fantasy goes like this—a very difficult but ultimately beautiful birth at home with my husband crying soft man tears and our doula singing while I drop our firstborn like a mango. But this isn’t how it happens. What happens is that we labor at home for 36 hours at which point, I tell my husband and our doula that I’ve lost my bubble of peace and want to go to the hospital—like now.

My son Cassius arrives via an emergency c-section twelve long hours after arriving at the Intermountain Health Center. Five days later, my husband and I make a 2 a.m. run to the Neonatal Intensive Care Unit because Cassius isn’t getting enough oxygen. My beautiful boy is turning blue.

I scrub my arms to the elbows and strap a paper mask over my mouth before I can enter this room with washing machine sized incubators holding babies the size of a man’s fist.

And after a full day of testing, the diagnosis comes back. To say I was unprepared, belies my degree of naiveté. Despite being 40 years old, I hadn’t felt the need to do any kind of genetic testing at all. My son had looked great, practically buoyant in his ultrasounds. The triple serum screening showed no issues whatsoever. I thought we were golden. I couldn’t imagine we’d have a child who was anything less than perfect. My naiveté, my ignorance and egocentricity pain me now. My assumption that my child would be just like me, excluded any possibility of disability because those with disabilities were invisible to me back then. I went into the NICU blind and came out with a son burning a brilliant new light into my eyes.

Dr. Templeman is gentle when he gave us the diagnosis. My husband and I sit in the hard backed hospital chairs, our bodies vibrating with fear. Cassius sleeps in my arms, tubes snaking everywhere, his little bird wrists limp against his chest. The silent wailing in my body that started when we walked into the NICU has not stopped. And when the words Down Syndrome drop from Dr. Templeman’s lips, all sound feels sucked from the room.

With those two words, my world drops out beneath me. I have no ground on which to stand. My boy. My beautiful, perfect boy has Down Syndrome? It doesn’t compute. I’ve never known anyone with a disability, much less Down Syndrome. I search the files in my memory and think, don’t they all have those Coke bottle glasses and soft bodies? Are those the people with Down Syndrome? I flash on a memory of one of photographer Diane Arbus’s infamous Institution photos taken in upstate New York in the 1970s. There were a lot of these institutions back then—warehouses where those deemed damaged or mentally deficient could be put away so as not to be a burden on family or society.

In the photo I’m thinking of, a group of maybe four or five adults are seen at a distance, holding hands in a field. Their bodies are soft and hunched with the unposed vulnerability of the very young. These are people who are unused to being looked at. They don’t arrange themselves. They don’t smile. They’re just standing there, waiting. And it’s Halloween, so a few of them have clown masks on and sheets that billow around their exposed, pudgy legs. And there’s something about the way they’re holding onto one another’s hands—as if they’re the only hands they have to hold onto in the world—that makes the whole scene feel sad and horribly lonely.

And there’s this thing that happens in life sometimes: you move into the photographer’s lens. A window opens and you fall through it and suddenly you’re inhabiting the world that the photographer documented. You feel the skin of the people in the picture, the cold air, the grass against your calves and those standing at the periphery, staring.

I remember the phone calls to my family. There were stunned silences. A few “I’m so sorrys.” And then there was wisdom, softness. You will stop spinning, a friend said. You are so lucky. You have no idea how lucky you are.

Cassius turned fifteen this year. The early years were filled with physical and occupational therapies and learning the manual of a child who is the same but also different. Cassius can run and jump and talk to you about zombies. He loves kissing his sister. He makes a habit of sitting at the base of one of the trees in our backyard and looking up. For a long time. Then he stands, shakes the tree branches as if he was shaking a man’s hand, turns and walks back to the house. He does a lot of sitting. And looking. And when he looks at people… there’s something that penetrates, something that always startles me. I’ve talked to other parents who confirm that their Down Syndrome child also has this look. They call it the Zen eye. Cassius has an openness to his gaze that often does something I can’t explain. He has a presence that wakes me. It’s a look that betrays a kind of intelligence that I can only hope to learn in this lifetime.

The Roman philosopher and poet Lucretius wrote an epic poem called The Nature of Things. In it, he talks about human emotion as existing on the level of atoms. Love, he said, was atomically smooth and soft. Love feels good when it moves into you. Hate, prejudice, anger—these things are sharp and angled. They’re fast. They hurt. Cassius reminds me of Lucretius’ poem. In this increasingly fast world, Cassius’ leisure feels more than good. It’s as if he is, down to the atomic level, soft and smooth. He’s love. He doesn’t have time for anything else.

Melissa Bond is a narrative journalist and poet. During her years of dependence on benzodiazepines, Melissa blogged and became a regular contributor for Mad in America. ABC World News Tonight interviewed her for a piece in January 2014. She is a respected writer on the perils of overprescribing benzodiazepines and has been featured on the podcasts RadioWest and Moms Don’t Have Time to Read Books. Her memoir Blood Orange Night was selected as one of the best audiobooks of 2022 by TheNew York Times and Moms Don’t Have Time to Read Books. Learn more at MelissaABond.com.

Melissa Bond headshot by Josh Blumental