Gifts to Open

Summer, 2008. Halfway through the “New Parents’ Survival” workshop at the NDSC convention in Boston, we paused for a question-and-answer session. Almost immediately, a woman with a young baby in her arms stood up.

“I don’t have a question,” she said, “but I was hoping I could speak for just a moment.”

I exchanged glances with Jennifer Graf Groneberg, my co-presenter for the workshop. She looked as curious as I was. “Sure, go ahead,” I told the women.

She took a deep breath. “This is Grace,” she said, holding her baby a little higher so we could better see. “I just wanted you to know that if I hadn’t read your book, my daughter wouldn’t have been born.”

The room grew quiet and still, and a lump rose in my throat. “Please tell us more,” I encouraged the mother. She went on to explain that when she received a prenatal diagnosis of Down syndrome for her first-born child, she and her husband had reluctantly decided that abortion was their best option. But then she read Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives. She was touched and transformed by the stories in the book, true stories of ordinary women finding joy and purpose in mothering children with Down syndrome. Together with her husband, she decided to continue her pregnancy. And the result was baby Grace, a beautiful little girl with bright eyes and pink cheeks.

It was difficult to continue the presentation after such an emotional exchange. Since the publication of Gifts the previous year I’d received a great deal of positive and poignant feedback. But I’d never before experienced such tender and dramatic confirmation of the power of its stories. Sixty-three mothers of children with Down syndrome took the time, energy, and risk to share their experiences with the world. As a result, the world changed—and not only within the walls of Grace’s loving home. We cannot measure the full impact of Gifts, but clearly the collection has brought comfort, knowledge, and healing to many, and is changing minds and hearts for the better.

In this spirit, I’m pleased to present Gifts, Volume II, a companion volume of stories written by a wide variety of people whose lives have been touched by an individual with Down syndrome. Not only do we hear from members of immediate and extended families, but also from neighbors, doctors, teachers, coaches, therapists, and friends. The individuals with Down syndrome highlighted in their stories range in age from infancy to adulthood, providing a colorful spectrum of experiences. And as in Gifts Volume I, the perspectives shared are rich with emotion, insight, candor, and humor.

As I’ve edited this collection I’ve been impressed both by the uniqueness of each story, and by the thematic threads which knit the stories together in meaning and purpose. We might not expect to find common elements in the differing stories of a wrestling coach and a grandmother, or a speech pathologist and a neighborhood friend, or a genetic counselor and a doting aunt. But we do. Again and again, as the authors stand up to “speak for just a moment,” they describe the positive change sparked and nourished by their relationship with an individual with Down syndrome. They reveal the gifts discovered in these relationships: acceptance, awareness, courage, friendship, and joy. They emphasize that in their caregiving roles with people with Down syndrome, they learn more than they teach, and receive more than they give.  Their separate voices combine to form a vibrant chorus of celebration and gratitude.

My son Thomas, who has Down syndrome, recently turned three years old and began preschool. As the bright yellow school bus stopped in front of our home, collected my little boy, then drove slowly away, I was overcome by bittersweet emotion that has lingered on, enveloping me even in this very moment. How thankful I am that Thomas is my son. How amazed I am that his first three years have passed so quickly. I’m proud of him for taking a significant step toward independence. But I worry about sending him out into a world that offers more opportunities than ever to people with Down syndrome, yet remains steeped in doubt regarding their value and capacity as human beings.

That’s one of many reasons why I’m so delighted with Gifts Volume II. I’m confident the chorus of voices arising from its pages will strike a chord in the lives of many, making the world a more welcoming place for my son and for all children whom society classifies outside the bounds of “normal.” I don’t believe any reader can come away from this volume without increased esteem and respect for individuals with Down syndrome and the contributions they make, both in their homes and in society at large. Yes, these stories prove that people with Down syndrome enrich their families beyond measure. But just as importantly, these individuals enrich the world. A world belonging to all human beings, no matter the number of their chromosomes. A world that has yet to fully appreciate people with Down syndrome, and has only just begun to open their invaluable gifts.

Kathryn Lynard Soper, Editor