The Blossoming of Peace
Parenting a child with Down syndrome.
by Kathryn Lynard Soper

PARENTGUIDE News December 2007

The bluish-white glow from the laptop screen was the only light. It was late on an autumn evening, and I was alone in my hospital room. Twenty-eight weeks pregnant— and scared. I had been put on strict bed rest a few days earlier when my preterm labor had finally stopped, leaving me dilated to four centimeters.

On the laptop screen was a chart showing the most common complications resulting from premature birth and their likelihood of occurrence based on gestational age. Respiratory failure. Cerebral hemorrhage. Severe intestinal infection. I couldn’t help imagining how awful it would be to face any one of these complications. What kind of a life would any of these issues cause this child? What kind of a life would it be for me?
I looked at the last item listed on the chart of complications: mortality. Facing the possibility of my baby’s death was terrifying. But, as I sat in the dark hospital room with tormenting fears in my head and a time bomb in my uterus, facing the bleak possibilities surrounding his life felt just as menacing, or even more so.

What happened next is difficult to describe. A deep sense of calm overcame my heart. The dark, dense cloud of fear shrunk and dissolved. My mind was still imagining all the challenges my baby might face, and all the trials I might have to endure. However, the hardships stopped mattering as much. I felt awareness growing deep inside of me— awareness of something good, something real, something stronger than dread and pain. I felt the beauty of life itself. As it sprouted within me and burst into bloom, I was filled with profound peace. Life is a gift, I suddenly understood. A good gift.

Two weeks later my contractions started again, and after a difficult labor and delivery, Thomas was born. Before I could see him, he was whisked into the NICU. My husband and I waited soberly for the Apgar scores. We sighed with relief when we heard the good news— a one-minute score of eight, a five-minute score of nine. We looked at each other, hardly believing our good luck.

Then two doctors entered the room with solemn faces and sobering words, “We think your son has Down syndrome.”

Though it seemed like months, it was only a few weeks before I sat in front of the computer monitor again. E-mails were streaming in from friends and family members in response to the birth announcement we had mailed out the week before. To their credit, our loved ones were full of cheer and encouragement regarding Thomas’s arrival. But I felt resentful and even angry about their easy words of goodwill. Why?
It was because I had too much to process and adjust to. I wasn’t ready to hear about how great my life would be, especially not from people who didn’t know anything about it themselves. Thomas was stuck in a NICU isolette with tubes and wires poking into every extremity. I was stuck in a new reality that I could not yet understand or appreciate. I felt so alone.

Then, a few days later, I received an e-mail from Ellen, a dear friend from high school. She has an adult brother, David, who has Down syndrome. In part, Ellen wrote: “I have no doubts that you will love and appreciate Thomas as he grows and develops on his own timetable. I had the opportunity to have David at my house for most of the summer and fell in love with him all over again. (Crying now!) You are beginning on a journey with countless rewards and blessings. Thomas will touch so many lives and educate so many around him. What a wonderful gift you have been given.” A gift.

I remembered the wisdom and calmness that graced me that night in the hospital room. Exhausted and bewildered, I tried unsuccessfully to again reach that same wondrous, restful place within myself. Yet, I believed my friend. I trusted her assurances that all would be well. She knew; she had lived it. And her words planted seeds of hope that someday, somehow, I would regain my sense of peace.

The winter months following Thomas’s birth and diagnosis were long and dark, in more ways than one. Thomas was home, but he needed oxygen supplementation and a feeding tube. I had to seclude him from public places. All the usual stress of recovering from childbirth and adjusting to life with a new baby was compounded by the complex medical situation and the frightening unknown of what the future would hold for our family.

But, as the light and warmth of springtime crept back into my days, my crisis began to abate. Thomas’s health stabilized. My daily routine with him felt increasingly like the work of parenting a typical infant. Life didn’t seem nearly as daunting. And, surprisingly, neither did Down syndrome. Though there were still challenges, such as juggling visits with specialists and therapists, Thomas was becoming more and more incredible to me. As my friend’s letter had predicted, his arrival in our family was bearing many positive changes. Thomas’s sheer presence was the greatest blessing. Over time the influence of his gentle spirit brought me that longed-for assurance that life is a gift— specifically, my son’s life is a gift.

With summertime, the last wisps of darkness that had clouded my thoughts and feelings slipped quietly away. Soon peace unfolded into full bloom.

Kathryn Lynard Soper lives with her husband and their seven children in the mountain west. Soper is also the editor of GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (Woodbine House).