“Does he look like anyone in the family?” the nurse asked, hopefully.
Minutes later, at about 4 a.m., the nurse practitioner stood at the foot of the bed. And for some reason, I thought she planned to announce the breakfast menu and when the kitchen opened.
Instead, she smiled with a curious compassion.
Something tripped in my brain, and then she asked my husband, David, and me if we knew anything about Down syndrome.
None of the non-invasive testing we underwent had prepared me to be “the one” – the one mommy in 54 women statistically likely at age 42 to bear a baby with this diagnosis.
The only thing we knew was that Down syndrome caused intellectual disability. We never knew that about half of the babies born this way also suffer heart defects or that Ray’s first blood draw would reveal another related health complication, a form of leukemia.
I quickly scrolled through my memory bank to put a face on the news.
Only a very faint image of a quiet girl with thin, straight hair helping with my high school’s hot lunch program surfaced.
I’m not exactly sure why I never knew her.
I graduated in 1985 with 80 other students in an Illinois town just 3,900 folks strong. I knew who concocted the best homemade root beer, and that the Dairy Dream on the highway sold it ice-cold in the summer. I knew who played Gen. Ulysses S. Grant at Civil War re-enactments during tourist season.
I knew lots of other esoteric aspects of our life together in a 19th century river town once bigger than Chicago and therefore a stump stop for Abraham Lincoln during his presidential bid.
But the only in-focus face of the syndrome I had then in 2009 happened to be the tiny one snuggled into my bosom.
That people outside of the hospital kept baking cookies, going to holiday parties, wrapping presents, writing cards, and stringing lights never occurred to me then for the next four days – even after a nurse pulled a red Santa cap hand-crocheted by a volunteer over Ray’s little noggin.
By Saturday night, I had slept so little and worried so much about my boy’s near-term health and long-term prospects that I shut off the fluorescent lights in our private room – the one with a picture window on the nurses’ station – shortly after the 7 p.m. shift change.
I slumped in the brown Naugahyde La-Z-Boy chair beside his bassinette and wondered about the parents who held vigil there before me. Whenever my cheek pressed against the headrest I smelled the faraway scents of someone else’s hairspray, someone else’s cologne, someone else’s story of a baby in trouble.
Holiday music played quietly beyond our doorway as I dozed and reflected on this birth experience — on how the temperature dropped to 19 degrees below zero that night, on how I never managed to swap my sweater for a gown before our doctor arrived in her Smurf pajamas and slippers to catch the baby.
One push and we met Ray – a brand-new 6 lb., 4 oz. boy all feisty and bawling despite the low muscle tone caused by Down syndrome.
The ruckus echoes in heaven and earth that life goes on!
As I sat in the dark that message finally found me when a song on the radio popped the bubble around my boy and me.
“I Need a Silent Night” by Amy Grant put a new twist on two evergreen carols:
I need a silent night, a holy night
To hear an angel voice through the chaos and the noise.
I need a midnight clear, a little peace right here,
To end this crazy day with a silent night…
When I took those words to heart, Christmas spun into the room like the snowflake that blew away that first day at LUH.
I noticed the Holy Spirit bending and tending to me as I did the same for my baby, and I sensed the prayers of friends and family freeing me to put thoughts about the phantom child – the Ray with 46 chromosomes, not 47 – to rest.
How marvelous the gift worth cherishing year after year.