A Story of Down Syndrome, Motherhood, and Self-Discovery

Kathryn Soper’s seventh baby was coming early.

After two weeks of doing everything possible to keep the baby in, he would be forced out. Our son. We’d chosen his name already: Thomas Reed. In the ultrasound photos his face emerged in wrinkles of light and darkness, the landscape of humanity. He was due December 23rd. A Christmas baby. But this was early October, not even Halloween (3-4).

Thomas was born. 4 pounds 3 ounces. Complications from an early birth were enough to worry Kathryn and her husband Reed. But an hour or so later two physicians came to Kathryn’s bedside to share news that would dramatically alter her life, and her spirit, forever.

“We think your son has Down syndrome.”

The Year My Son and I were Born is Kathryn Soper’s story. It begins this time of year. Fall. A time of change and letting go. Perfectly appropriate for the journey of a woman who would begin to shed an old life the moment her newborn son “showed up with an extra chromosome.”

Soper’s memoir is heart-stopping, revealing and stunningly written. I laughed aloud in places. I sobbed in others. Maybe it’s because I recently had two premature babies of my own and the NICU period was fresh for me. Maybe it’s because my babies are boys and I too have dreams for their future. Maybe it is because I’m a mother and any mother can relate somehow to Soper’s experience.

Soper is a gifted author. The beauty of her writing comes not only in her story-telling and word choice but in the deep honesty of what she has to share. She says it like it is. Her wrestle with despair, self-doubt, and personal bias. Her struggle with depression. The challenge of mothering six other children while trying to keep her marriage intact. Learning to meet Thomas’ changing needs. It’s all there. Raw and undiluted like balm for the battered spirit of a mother who aches to know she isn’t alone.

Soper’s candor, subtle humor and uncommon depth will engage any reader. The book is a page-turner. One of the best memoirs I have read. Her story is one that needs to be told. One we have longed to hear. A story that leaves you burned in the bones, broken, transformed.

Although Soper is LDS, she writes for readers everywhere, giving just enough background for a non-LDS audience to understand her story. She takes nothing for granted while gracefully explaining Mormon culture in concise and simple ways.

The book is about discovery. About having courage to confront our own ignorance, fear, and prejudice. It is also about love, acceptance, and gratitude.

W. B. Yeats wrote, “nothing can sole or whole that has not been rent.” Sometimes the very thing we worry will tear us apart becomes what we cannot live without. The source of our most abundant joy. So it was for Kathryn with Thomas.

Gifts

In gentle, layered ways, Soper restructures how we look at individuals with Down syndrome. Her book is a must for families with Down syndrome children, as well as her anthology, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. Soper worked on Gifts during the first year of Thomas’ life and by his first birthday it was ready for publication.

When she finished, she called her mother to share the news. While talking about the women who contributed their stories, Soper’s mother said, “Special babies really do come to special mothers.” Soper clenched her shoulders at the phrase. “No, she said to her Mom. “I don’t think so.” She writes,

Mom was quiet. My heart pounded. I didn’t mean to get persnickety, but it just wasn’t true. I wasn’t special. I’d bet none of the other Down syndrome parents considered themselves to be special either…I had to explain…”When you read the book you’ll understand what I mean. None of these moms started out any different from anyone else. They’re wonderful people, but I don’t think that’s why they have kids with Down syndrome. I think it’s the opposite. I think having a kid with Down syndrome helps them become wonderful.”

The words just came out…Having a child with Down syndrome didn’t automatically grant those women compassion and goodwill. Whether the diagnosis came prenatally or postpartum, each of them had to decide whether to welcome her baby into the family. Each of them had to decide whether to open her heart to change, to difference, to hidden beauty and unsung worth. And each of them, consciously or not, had said yes.

Yes, we will love him. We will love her…

Everyone who walks the earth faces the same choice: to love, or not. And everyone who chooses love receives the same reward, although it comes in different packages. Mine happened to be the slightly cross-eyed little boy sitting in the center of our family portrait, which hung in the center of the hearth, which stood in the center of our home – right where we wanted him to be (309-310).

Seasons

Soper takes us, season by season, through her first year as Thomas’ mother. I’ve included an excerpt from each season to give you a flavor for her writing as well as her story.

Fall

Could I love such a son?

I rubbed my arms and legs with a rough washcloth, determined to scrub away not only blood and sweat and oil, but also doubt. Of course I could love Thomas. I already did. I loved him as I’d loved each of my new babies, with a primal strength full and fierce. My friends and family members couldn’t share the burden of his disability, but they couldn’t share this intense bond either. Not even my mother could.

Yet I knew the bond wouldn’t be enough, not for long. It was instinctual. Even animal. Thomas deserved human love, the delight and appreciation and tenderness one unique person feels for another. I’d never felt this for a person with Down syndrome or any other disability. I didn’t know if I could.

Goose bumps rose on my arm – the hot water was gone. And my time to indulge in weakness was gone. A child waited in a plastic box down the hall, and six more were waiting at home, waiting for security to surround them like a warm mantle, soft yet strong. Waiting for their mother (16).

Winter

“We’re just about done,” [Melody] said (a therapist form the school for the deaf). “Is there anything else you’d like to work on with Thomas this year?”

Thomas fidgeted on his eye-stimulating quilt. The night before, for the first time, I’d taken him on my bedtime rounds. Ben was curled up under his fuzzy blue blanket, waiting for me. I perched on the edge of his bed and laid Thomas across his chest.

“Hi, Thomas,” he crooned, rubbing his brother’s back. We sat in the near-dark, the three of us, silent. Thomas’ little head bobbed as he studied Ben’s hairline. His eyes shone in the faint light coming through the window.

After a few minutes, Ben let out a big sigh of sleepy pleasure. “I’m just so glad he’s here.” Another big sigh. “I mean, he has a condition, but who cares?”

Good question. Sitting on the floor with Suzanne and Melody (therapists), I was tempted to ask them the same thing. Why did we have to focus on changing Thomas? Why did it matter when he reached his milestones? I didn’t want to care about when he rolled over, or drank from a cup, or waved his hand…I just wanted to love him – without hesitation, without condition. And I wanted him to love me back.

I wondered if he would. I wondered if he could love me the way I wanted to love him – as a distinct, unique, irreplaceable individual. But according to the stereotypes, kids with Down syndrome love everyone. That seemed to water down the significance of any given relationship. Would Thomas distinguish me as his mother, or would my face just be one of many in his warm little world?

“There is one thing,” I said.

Suzanne and Melody smiled their encouragement.

“I want Thomas to know me. I want him to know I’m his mom.”

Both women were quiet. I couldn’t read their faces.

“Will he know me?” I asked after a moment, feeling like a fool.

Suzanne smiled, her eyes tender. “Oh yes,” she said. “Yes, he will definitely know you.”

I nodded, worried that if I spoke I’d start crying.

“It’s a wonderful goal. We’ll put it under ‘social skills,'” Suzanne said, writing it down…They stood to leave, handing me copies of the goal sheets – ten pages of them. “We’ll see you next time,” they chorused…I tried to smile back as I saw them out the door, and into the endless winter (151-152).

Spring

“Ready, Kath?” Reed held his arms out. I handed Thomas to him and stood back as the elders formed a circle around them. All of us bowed heads and closed eyes. The room stilled. In the silence Reed addressed God the Father and presented Thomas Reed Soper before him. Then he began to pronounce the blessing.

“We bless Thomas that he may fulfill his unique mission on earth. We bless him that any burdens presented by his health will not be too great for his family to bear. We bless him to be a teacher in his family, to show them how to love each other.”

I started crying. Reed continued for several minutes, using words that filled the air with near-palpable-charge. Then he paused.

“And Thomas, we say unto you -“

Reed began to weep.

“We say that any good thing denied you in this life will be given in the life to come.”

The blessing ended. I didn’t want to open my eyes, didn’t want to lose the sensation of light filling my skin. But all around me, sound and motion were breaking the stillness. I shared hugs with my family, my neighbors, my friends. I saw light in their faces, felt it in the touch of their hands. And when Thomas was back in my arms, I knew he was the reason.

That night, Reed and I lay together in bed, my head on his chest. There was so much we could talk about – the day, the blessing, the future. My unanswered questions, and his. But instead we stayed quiet, savoring the golden glow that lingered between the slow, steady beats of our hearts (208-209).

Summer

It was funny. All along I’d worried about waking up one morning to find an awkward disabled guy eating Froot Loops in my kitchen. But that guy wouldn’t be some random man with Down syndrome…or the man I hid from on the train…or any of the men sitting near me, drinking sodas in the sunshine. He would be Thomas. He would be my son. Of course that being the case, he probably would  be weird – but so much the better. And he probably would have limitations. But when it came to happiness, the only doors closed to us would be the ones we refused to open.

From one of the pavilions we heard what sounded like a band striking up. When we drew closer, we saw three girls with Down syndrome onstage in matching sailor suits, shaking to “Boogie Woogie Bugle Boy.” They were smiling and swaying, wagging their fingers in time to the music on the PA. From the stroller Thomas bobbed his head and wiggled in his seat, moving to the music. When the song ended the crowd erupted with applause. Some people got up on their seats and whistled.

Next up was a boy in a Spiderman suit, busting some major dance moves to the Spiderman theme song. My kids cracked up and cheered along with the crowd when he was done. Then came a kid in a motorcycle jacket and sunglasses rocking out to “Greased Lightning.” Then three girls who shimmied through their steps in pink feather boas. Halloween had come early this year – and clearly, Down syndrome was nothing but another costume.

After a slight break in the action, four girls in sparkly red jackets hit the stage with a hip-hop routine. Energy streamed from their bodies, filling the air and touching us with glowing fingers, just like Thomas’ radiant presence touched us every day. How it happened was still a mystery. Maybe that extra chromosome acted like Teflon, preventing anything heavy or dark from sticking to his soul. But I still couldn’t believe that his soul was that much different from mine, from Reed’s, or Ben’s, or anyone else’s (320-322).

Transformation

Soper’s year of birth (and re-birth) tells of several transformations. Most dramatic is the evolution of her own soul. She explains,

So much happens within a mother, without her knowing. When Thomas was conceived, I didn’t know my body was creating a child of change…I didn’t know that I was on the verge  of birth, and of death. The death of old ways. Old values. Old self, packed in a hard shell of protective beliefs.

I only produce normal babies.
I can conquer any difficulty through sheer willpower.
I will always give my children what they need.
I am something better than human.

Strange – I’d clung so tightly to those falsehoods, as if they could keep me safe. Yet I felt safer with them stripped away, safer with the naked truth in full view. I only wish change didn’t hurt so much. It hurt to have my mind and heart cracked open…to lose the only life I knew, and to realize that no amount of magical thinking could bring it back.

On my fingertip, the peach seed looked and felt like a soft, damp almond. It seemed so small and so vulnerable. Yet when its time came, it had to leave behind its shell in order to live. Just as a baby must leave behind the womb, and a mother must leave behind her illusions (314).

Below she recounts a family testimony meeting where her other children share how they feel about Thomas.

Andrew raised his hand and Reed motioned for him to begin. “I want to share my testimony that I know we’re blessed to have Thomas in our family.” Everyone got quiet. “I know we can help him, and he can help us. I love him so much.” His voice trembled, just like it had all those months before when he lay in the dark and spoke his love for his tiny baby brother.

Christine’s voice broke the stillness that followed. “Sometimes I wonder what heaven will be like. But I think I already know, because of Thomas.”

“Me too,” Elizabeth said. “I feel sorry for families that don’t have a baby with Down syndrome” (306).

In this final excerpt, Soper expresses her thoughts after watching a woman who lost a Down syndrome son hold Thomas.

She wept again. I could feel her grief, and her love. And with sudden clarity, I knew the two weren’t mutually exclusive. They were two sides to one coin – the coin that had slipped into my pocket the moment I heard Thomas’ first gurgled cry. I loved him even as I mourned him. I loved him even when I wished him gone. In truth, love was the very reason I’d wanted him to go – I thought he’d be better off without me.

I didn’t think that anymore (312).

The Year My Son and I were Born is tenderly written and profoundly moving. I see life differently because of it. I hope it will be widely read. The world needs Kathryn Soper’s perspective. She wields a sense of strength, coupled with submission, that sparks powerful change. Change that needs to happen within all of us. Heartfelt thanks to Kathryn for bravely sharing her story. It is exquisitely beautiful and alive with painful, yet joyous moments of truth.

Kathryn Lynard Soper is the president of The Segullah Group, an organization that produces personal writings. She is the editor in chief of the literary journal, Segullah, and editor of a second anthology: The Mother in Me: Real-World Reflections on Growing into Motherhood. She and her husband, Reed, live with their seven children in Salt Lake City, Utah. Learn more about her @ kathrynlynardsoper.com

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