The Life I Planned, the One I Have

A photograph circulated our house for years, moving from room to room wherever my daughters played. Most often it could be found greeting guests at the front door, held up by dimpled hands, presented as a small offering. “Look,” one girl would announce with pride. “This is the first time we met our brother.”

Smudged with miniature fingerprints, the image reveals two sisters, babies themselves really, holding a newborn boy. The four-year-old sits in a rocking chair and stretches baby brother across her lap—his feet tucked in close to her belly, his bottom resting on her legs, his head gently cupped in her outstretched hand. They are eye-to-eye. The almost two-year-old stands next to her big sister and rests a single hand atop her brother’s head, studying his face with uncertain awe—golden skin, brushstroke eyes, a shock of pale hair peeking from beneath a hand-knit cap. The baby, small and limp, seems unaffected by their presence. Perhaps he is too tired to wake himself, new as he is in the great wide world. Perhaps he recognizes their voices, so clear now, unlike the same time the day before when he heard them through layers of his mother’s womb. In any case, he is a picture of peace. 

Somewhere outside the frame stand a mother and father and, just beyond, the mother’s parents. The picture, blurry, is not so different from the mother’s vision at that time. Behind her weak smile, she secretly longs for a time before now—a time when welcoming her third child felt less complicated. 

Our lucky number three entered our world like a tiny gust of wind one January morning—a boy whose first name means courage, whose middle name means gift.

The attending nurse, a cheerful, middle-aged woman with nut-blonde hair, lifted my newborn from my chest and walked him to the scale. Her voice, too shiny-happy for the ascetic space of a delivery room, jarred me. “Big boy! Seven pounds, one ounce!”

“My girls were bigger,” I said from the bed, exhausted, but propped on my elbows, watching. Wondering.

“Don’t forget he’s two weeks early,” she chirped, shifting him to the examination table.

Under the glow of the warming light and the nurse’s touch, my son gradually woke to the world. His arms thrust above his head and flopped to his sides over and over in a wave he either enjoyed or couldn’t control. I heard it before I saw it, the erratic swish of limbs against the table.

“Look how he stretches!” the nurse laughed.

I craned my neck to get a better view. Why is he so floppy? 

She dabbed a black ink pad onto his miniature feet and pressed them first on his hospital documents, then into our baby book. My breath hitched. The space between his first and second toes was so wide. I had never seen such a footprint.

The delivery doctor, a smallish man in his thirties with horn-rimmed glasses that swallowed his delicate face, was quiet. He studied my minutes-old son then stepped out of the room. He returned a few minutes later and inspected him again. I watched the doctor, but he would not meet my gaze. He stepped out. In. Out. I told myself he was just admiring this new life.

When the nurse handed the baby back to me clean and swaddled, I studied his face in the way every mother does. I’ve been waiting so long to meet you. I brushed my fingers along soft, even skin. I noticed his almond-shaped eyes, the way his small brow met them without curve or contour—so unlike my girls, born with well-defined brows and round doe eyes. My heart raced.

I unwrapped the swaddle just enough to reveal a sweet baby hand, reached for it, and froze. My son’s fingers were shorter than I expected; his index and pinky fingers curved dramatically inward, as if reaching for one another. Confusion draped itself like a thick fog.

“Mark, look at his fingers. Why are they like that?” I asked my husband, who ran a gentle hand over our son’s tiny form.

“Every baby’s different,” he said, seeing and not seeing at the same time.

Shiny-happy nurse leaned in to examine. “Oh! He must have been squished in utero! They’ll straighten out!”

I looked at her. She shot me a sunny smile and nodded, her nut-blond head bobbing with vigor. Squished? She must be right. His Apgar scores are high—8 and 9. Isn’t that proof? My questions rose and fell on waves of unease.

The signs were obvious but indecipherable. Submitting, instead, to the euphoria that follows birth, I distanced myself from my misgivings. I held my son—healthy and here—in my arms, while he nestled his face against my bare skin to nurse. The familiar tug soothed me as I watched him drift into deep sleep.

The hospital staff grew efficient—another mother would soon need our room. Someone took the baby to the neonatal nursery for his barrage of screenings, while the shiny-happy nurse tucked me into a wheelchair bound for recovery. As we bumped over the delivery room threshold I spotted the young doctor and a nurse I had never seen whispering in the hallway, heads close. I paused to thank him, but his horn-rimmed eyes never left his loafers. He managed a muffled “You’re welcome.” In contrast, my delivery nurse couldn’t stop talking as she maneuvered my wheelchair down the corridor, Mark just behind us.

“You guys are great,” she beamed us an extra sunny smile, as she dropped us off at our room. “You’re going to be great.”

“I wonder why she likes us so much?” I asked Mark, wiggling my bottom into a more comfortable position on the bed, but he, too, was at a loss.

I took in the room with its familiar wallpaper of trailing German ivy, the mauve vinyl chair next to my bed, the heavy pastel privacy curtain, the faux wood table where visitors would lay down their offerings to reach for our baby for the first time. I had been here before.

Just before noon, Mark went to the nursery to rescue our son from heel pricks and miniature blood pressure cuffs. A nurse appeared to take my vitals and interview me about my other deliveries. When she finished, she plopped herself in the mauve recliner next to me and attempted small talk. I feigned interest, hoping not to seem rude.

Finally, I heard the door unlatch. The emphatic absence of rattling bassinet wheels startled me, further eroding the widening canyon of my morning’s confusion. “What took you so long?” I asked before I saw.

Mark stepped into the room with a new doctor. “The pediatrician has something he wants to discuss,” he said, his voice flat. As he moved into the room, the doctor behind him, I recognized shock in his eyes and a kind of calculated detachment on the doctor’s face. The two men formed an odd brigade at the foot of my bed, this all-business, small-statured man I had never met and my stricken, six-foot-three husband. I fixed my gaze on Mark, while words flew out of the doctor’s mouth that sounded like they were for some other family. Or no one at all.

“Your son’s features present certain characteristics,” the pediatrician began. He evaded his office as long as possible, offering details without context, working backwards to the truth.

My mind numbed. I was steeling myself for a blow I knew was coming, news I recognized hours ago but could not name. The room shrunk. The vines on the wall blurred. I hadn’t been here before, after all.

Finally, the pediatrician arrived at our destination, “We’ve sent some blood work to UMass for a genetic study.” Pause. “To confirm what may be Down syndrome.”

Confusion turned to fury. “Confirm what may be?” I blurted, “What does that mean?” How dare this doctor speak circles around the topic of my son’s health? His difficult task complete, he left us—arms empty, full of unspoken, half-formed questions.

The nurse drew the privacy curtain and hung a “Do Not Disturb” sign on our door, while Mark slipped into bed next to me and wrapped me in his arms. We held each other and confessed our fears. We spent nine months imagining this child. Whose personality would he favor? Who would he resemble? What sports would he play? What books would he love?

All the questions were different now.

Is his heart okay? Will our girls understand? Can we take care of him the way he needs? Is this an emergency? Something else?

My boy with the high Apgar scores now rested in the NICU, hooked up to a heart monitor, a pulse oximeter, blow-by oxygen, while a nameless courier whisked his blood sample across town to the university hospital for genetic testing.

The before and after felt devastating.

When my parents arrived, Mark and I shared with them the difficult details of the day, bearing witness to both our questions and our fears. Would telling my baby’s birth story always be this hard? What would I edit in the days, months, and years to come? What version would become the one I told my son? In the warmth of our corner of the NICU, we passed our new addition around, wires and all. “We love him even more,” my mom whispered over him. “We love him even more than we did.”

The genetic test revealed what I hadn’t wanted to believe—Trisomy 21, Down syndrome. Our family’s assigned geneticist drove snowy roads to sit with us and explain the science of Down syndrome, but her sentences came apart before they reached me. Instead, single words and phrases landed on my flesh, stinging it like cold, heavy snowflakes. Extra twenty-first chromosome. Heart defect. Hypotonia. Intellectual disability.

While she talked, I attempted to nurse the baby. Whenever one of us moved, the pulse oximeter, sensitive to the slightest motion, signaled a shrill warning. Every alarm jarred our connection, forcing us to start over. I wanted to tell someone he wasn’t nursing the way he should, but I was the designated receiver of information, not the giver.

The next morning my parents brought our daughters to the hospital. I worried the complexities of my emotional rollercoaster would seep into the simplicity of meeting their brother. When they arrived, we guided them, bouncing with anticipation, into the nursery where our baby had spent all but his first hour of life. His O2 levels still required monitoring; his heart murmur still concerned; his weight had dropped; and a newly-emerged case of jaundice demanded frequent blood draws that left his heels pricked purple with bruises. He rested under constant watch, and so, by default, did we—learning our baby not in the privacy of our room, but in a tight circle next to the nurse’s station near a handful of other families whose newborns rested under warming lights or inside the plastic billow of an oxygen tent. 

What would the girls think of this medical mystery? A nurse lowered seven pounds of swaddling into the girls’ arms, snapped a picture, and printed two copies—one for each sister to take home. 

Though they treasured them, there must have come a day when my daughters set the photos down and did not return to them. But I did. Over and over. After all, there was more to see; what was blurry slowly became clear. The children’s postures are an open window. Love writes itself across girlish faces, as two newly-minted big sisters drink in their brother with deep brown eyes and satisfy an eager thirst with their hands. Their perfect baby brother, the very one they always wanted.

Watching them love him pulled me out from under the diagnostic cloud that followed us to every extra appointment and hung over every difficult feeding. But it was the boy himself whose presence loosened the broken things I had carried for years and never named: undiagnosed anxiety; an unhealthy commitment to perfectionism; a lifetime of socially-constructed false narratives about disability; and an educational system that had unjustly separated my classmates and me from our peers with intellectual disabilities. Those were the problems. Not Down syndrome.

Until I knew how to see it, I blamed myself for the unexpected path our lives took the day we welcomed our son. I, the mother, whose body betrayed her child at conception. I, who asked, if a body cannot not do what bodies do, how will a heart do what it ought? But as it turned out there was nothing wrong with the mother’s love or the child. Both flourish.

One year later, on a sharp, winter day, I bundled my son into his car seat, and we retraced the twelve miles to the hospital. I planned to donate his car bed, a special seat for infants with low muscle tone, because we no longer needed it. But mostly, I wanted to flip the story. To present my growing boy with his gorgeous eyes, easy smile, and determined spirit to the doctors, whose focus on what they perceived my son would inevitably lack, had prompted them to treat his diagnosis as if it were terrible news. If I hadn’t been sad or afraid, maybe I could have spoken a different truth into their solemn and skewed story. Maybe there was still time. I also wanted to find the nurses who had cared for us during our stay in the NICU, who offered our family more than just their expertise, but above all, tenderness.

More than anything, I wished to visit the ghost of that other self, to return and tell her what I now knew, to give her permission to trust her love over the noise. If I could, I would sit in that mauve chair at her bedside and piece together the story of how her heart had broken—and mended again, strong and whole. I would show her all the ways she holds the hard and the good with open, steady hands.