Nancy Jo Sullivan with daughter Sarah, August 2003
Recently, while listening to the radio in my car, I heard a news report that took my breath away. The radio host reported that a couple from the west coast was recently awarded three million dollars for the “wrongful birth” of their Down syndrome daughter. The family sued a health company for botching a prenatal test that inaccurately determined that their child would be a healthy little girl.
I felt all the muscles in my neck tense up. I clutched the steering wheel tightly. Wrongful birth?
As the mother of a Downs syndrome child, I was dumbfounded. This is a child they’re talking about, a little human being with a face and feelings…
Driving onward, memories began to surface. In my mind’s eye, I saw myself at twenty six years old, a first-time mother recovering in a maternity ward bed. As I cradled my newborn, I couldn’t stop smiling. “She’s beautiful” I told my young husband. He beamed.
But our joy was short-lived. Soon, a team of doctors began gathering around my bedside. Dressed in surgical blues, they held clipboards and scribbled notes. “I’m sorry…” one doctor said. The room grew quiet and still. Another doctor cleared his throat. In almost a whisper he said: “We believe your baby has Down syndrome.”
Questions, all of them unanswerable, filled my thoughts. Why this baby? Why our family? What did the future hold? As new parents, we were beginning a map-less journey. Sarah would never be like all the other “normal” children in the world. She would always bear the tell-tale signs of a disability; slanted eyes, low muscle tone and delayed development. Her speech, hearing and vision would be impaired. She would probably need assistance all her life.
I felt ill-equipped to raise such a child. I told God he had made a mistake. “Surely someone else would be a better mother….” I thought.
But as the first months and years of Sarah’s life passed, something wondrous happened. I began to fall in love with this amazing little girl. As a baby, her eyes shimmered with light. She never went through her terrible two, threes or fours. She was too busy defying her disability, grinning widely as she slowly learned to walk, talk, sing and dance.
As she grew, Sarah developed a fondness for fairy tales. Looking back now, I think she identified with Cinderella Snow White and Belle, and all the other maidens whose lives were transformed by the power of true love.
One afternoon, I was reading Snow White to Sarah and her two younger sisters. As we cuddled together on the couch, Sarah pointed to an illustration of a princess wearing a crown. “Mom…that’s…that’s me…” she stuttered. She jumped up and began dancing around our family room.
“I…I…I’m loved…” she proclaimed.
As Sarah moved into her teenage years, she became more pensive and began penning her thoughts on the inside covers of her fairy tale books. Each afternoon, she would sit at her desk wearing a dress up gown and one of the many crowns from her collection.
Sometimes, as I passed by her room with a laundry basket, I would take a peek at her misspelled messages; “My name is prncess Sarah…I alwys fllow my dreams…Somday my prince will come…”
One day she wrote: “I have a pirfect life” As I went back to my work, I couldn’t stop grinning.
Sarah’s unconditional love and appreciation for life brought me great comfort, especially on days when I couldn’t help but worry about her future.
“Sarah, you have a pure heart.” I often told her.
“I know” she would always reply.
My memories faded as I drove into our driveway. Just before I turned the ignition off, I heard the radio host explain that 89 percent of women who learn they are carrying a Downs syndrome child will choose to abort their pregnancy.
For a moment, I closed my eyes. How can this be? I let myself imagine what my life would’ve been like without Sarah.
Opening our front door, I made my way up to Sarah’s room. She had died four years earlier at the age of twenty three. With God’s grace, I had done the hard work of grief and had found the strength to pack up most of her belongings. But I had left a few of her favorite crowns on the shelves. As the sun streamed in through the windows, I sat down at the desk where she used to do her writing.
During Sarah’s brief stay on earth, she never once lamented about what she couldn’t do. Instead, she read love stories. She shared kindness. She wrote beautiful messages. She dressed up on ordinary afternoons. She danced. She smiled. She saw goodness in her imperfect life.
Were there days when her disability was hard on me? Did I have moments when I wished that everything was different? Of course.
But as I sat there, I couldn’t seem to recall the hard days. Maybe that’s because she was one of the greatest blessings I have ever known.
I took one of Sarah’s crowns into my hands. I thought about the wrongful birth lawsuit. I knew I couldn’t judge the parents who received three million dollars for an inaccurate prenatal test. I didn’t know them. If anything, I felt a strange kinship with them. Like our family, they received a child much different than the one they were expecting.
But as Sarah’s mom, I couldn’t reconcile the term wrongful birth with the rightfulness that defined my daughter’s days.
Yes, the first moments of her life were filled with confusion and unanswerable questions. But the blessings that followed brought untold transformation to my life. Sarah’s very existence was a testimony to God’s true and unfathomable love.
There was no wrongness in Sarah’s birth.
Her life was a pirfect gift.
And I am richer for it.
“You formed my inmost being; you knit me together in my mother’s womb. I praise you, so wonderfully you made me; wonderful are your works! My very self you knew; my bones were not hidden from you, when I was being formed in secret, fashioned as in the depths of the earth. Your eyes foresaw my actions; in your book all are written down; my days were shaped, before one came to be.” Psalm 139:13-16
Copyright 2012 Nancy Jo Sullivan