Seeing the light: Mother of a child with Down syndrome says parents should enjoy the journey

Kathryn Lynard Soper went into labor 12 weeks early. She was sent to the University of Utah Medical Center, where they were able to delay things for two weeks. "Then they put me in a delivery room with a 'drive-in window' to the ICU. When Thomas was born, he was whisked away. We didn't see him at first, but we were encouraged because his Apgar scores were high."

Only later, when two of the doctors came to visit, did she and her husband, Reed, get the news: "They told us they suspected Down syndrome. My husband and I looked at each other. We had always wondered if this would happen to us one day."

They had actually talked about it in a philosophical kind of way; but reality was different. "When I finally got to hold him, he was about half the size of our other children. The hardest thing was not knowing what he would be like."

It was winter, and a dark time for Soper in more ways than one. Thomas spent his first six weeks in the hospital. Soper spent a lot of time on the Internet looking for information. She found a lot about the medical conditions and possibilities. But no two Down syndrome kids are exactly alike. "There is such a wide range of abilities. We knew there would be some degree of mental retardation. There is a whole list of possible complications, but no one could tell us which ones Thomas would have. We had that great fear of the unknown, not knowing what to expect."

But after Thomas came home from the hospital, an amazing thing happened, says Soper. "The more time we spent with him, the more we began to think of him as a cute baby. As his health stabilized and the more we got to know him as a person, we began to be excited that he was here, and the fear went away. We began to have a beautiful experience."

That's the dynamic many new parents don't know about, she says. That was what she was looking for during all those dark months. What she wanted to read were more experiences from parents talking about their lives. "I wanted 'company' as I explored my conflicting emotions, which alternated between happy and proud, and sad and scared." She found a few chat rooms and gathering sites, but there wasn't much out there, she says.

"The bulk of what you read about Down syndrome is negative." But when you talk to mothers of Down syndrome children, they have a lot of positives to share, she says.

That's when Soper decided to compile some of those positives into a book. She put postings on Web sites asking other mothers to share their experiences. "We got such enthusiastic response." She ended up with 63 stories, which she has compiled into a book called "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives" (Woodbine House, $18.95). Already, she says, it's going into the second printing. "I feel like it is a unique and valuable collection."

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