To My Wife on the Day Our Daughter With Down Syndrome Was Born
Twenty-six years ago, we brought a child into this world who made us cry and fear for everything: Her future, our future, the lives of everyone we knew well and held dear. We didn’t know it then, because no one does, but that day birthed a new us, and everything we could ever have possibly hoped for.
Jillian Phillips Daugherty checked in on October 17, 1989 — the day of the San Francisco earthquake, for those hunting metaphors. She weighed 6 pounds, 11 ounces and was rosy-healthy upon arrival. Unlike her quiet, curious brother who preceded her by three years, Jillian greeted the world wailing and pumping her fist.
She had a big, round face and eyes like almond slivers. And peculiar horizontal lines that ran the breadth of her tiny hands. “Simian creases on the palms,” someone had written on the medical chart hanging from the foot of your hospital bed. Jillian’s pinkie fingers curled inward.
You didn’t notice that then. You were glowing. You’ve never looked more beautiful than on our wedding day, unless it was on the days you gave birth to our children.
It was a few hours until you learned Jillian had Down syndrome. A doctor who thought someone had told you dropped it into casual conversation, along with a reference to Jillian’s “floppy” muscle tone. I had gone home, to bring our son, Kelly, back to the hospital to meet his little sister. You called me.
“The doctors think Jillian has Down syndrome,” you said.
It was the worst moment of our married lives.
You handled it better than I did. While I busied myself cursing God and beseeching Him to spare Jillian and take me, you didn’t even cry. You didn’t want to upset Kelly. Or your parents, who arrived late that first morning. I can’t imagine the strength it took to do that. Or the compassion for others.
The details of those first 24 hours remain clear: the phone calls we made to my family, the good face we wore for Kelly, the complete and utter wish that the day would go away and come back perfect.
“What are we going to do?” I asked. You had no answer. Not on that first day.
That was the last bad day, thanks to you. Your will saved us. It set the tone, then and now. When the well-meaning nurses and counselors arrived bearing information detailing all that Jillian likely wouldn’t do, you were the one to throw it in the trash. Literature warning us of Jillian’s potential health issues found the same abyss.
“We wouldn’t allow anyone to define Kelly,” you’ve recalled a million times since that day. “Why would we allow it for Jillian?”
We have operated on that basis forever. Whether it was school administrators wanting to keep Jillian from regular-ed classrooms or the general public assuming Jillian couldn’t achieve like a typical kid, it was your palm — sometimes gentle, others forceful, always persistent — in the small of perception’s back. Nudging.
We might have developed together our guiding mantras — Expect Don’t Accept; See Jillian, Don’t Look at Her; Live in the Moment – but you were the one who put them into play, every day. Jillian would not be Jillian without you.
The first day of Jillian’s life was unlike any other. We allowed ourselves to grieve and process. At about 2 in the morning, I heard you crying softly. “Come on,” I said.
At 2 a.m., a hospital ward comes with its own contradictions. Hopeful and hopeless, peaceful and dreadful, all at once. I didn’t know what we were going to do tomorrow or the rest of our lives with Jillian. I only knew what we would do that moment, and that was walk down the hall to the NICU and ask to hold our child.
Jillian was wrapped deeply in a pink blanket. Someone had attached a pink bow to the wisps of her brown hair. I handed her to you. “It’s going to be OK,” I said. Whether I believed that or not didn’t matter. “Our little girl is going to be all right.”
Twenty-six years later, Jillian is married and living on her own. She works full-time. She has taught us more about ourselves and what matters in the world than we could ever have imagined. She is the best person we know.
You got her to this place, Kerry. You took her to the therapies, you studied the law that gave backbone to our education argument. You scouted the colleges. You planned the wedding. More than that, your DNA (equal parts determination, wisdom and compassion) found its way into Jillian. She is you. Thusly fortified, she has always been able to meet the standards you set, 26 years ago.
That first day gave life to a fine human being, but also to the notion that everyone should have the right to define him or herself. Happy 26th, Jillian. Happy day, again, Kerry. You rock.
Paul Daugherty is the author of “An Uncomplicated Life,” a memoir of raising Jillian. It’s available on Amazon.com and on Paul’s website, uncomplicated.life.
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