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

The only difference, so far, Soper says, is that "some development has been delayed. He's not walking yet. He's just started to get by the couch and pull himself up. His speech development has been delayed. If he were my first child, those milestones might matter more. But I stopped caring about those things by child four. I would not be any happier if he could walk and talk now. It does not affect his quality of life, or mine."

Thomas is prone to severe colds. He has a mild degree of hearing loss, but no heart defects have been detected. He's prone to fluid collecting behind his ears, so he's had tubes put in. "We have early-intervention therapists who come to check him once a month," she says.

As he gets older, he's getting more feisty, she adds. "He will go knock over his brother's tower of blocks just to see what he will do. But he also gets very concerned if one of the other kids is crying."

Soper knows there will be challenges as Thomas gets older. "He won't be a cute baby forever. He will be a pimply 16-year-old. Education will always be a concern." That has prompted her to begin collecting material for another book that will focus on older children with Down syndrome, as well as add perspectives from fathers, siblings, grandparents, teachers, community workers.

But, for the most part, she says, she has made peace with it all. "No one knows what will happen. Things have changed so much in the past two decades, they could be so different. We don't know what services and treatments will be available."

Worst-case scenario, she says, "is that Thomas will always depend on us. But Thomas is Thomas. If he is with us all our lives, that doesn't bother me, that doesn't scare me anymore."

The Soper family is traveling down a road they might not have chosen, but they will enjoy the journey. "My biggest fear was 'will we be happy?' My answer now is a resounding 'yes.' We will be happy if we choose to be. Thomas is a gift."

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Some thoughts from "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives," edited by Kathryn Lynard Soper:

• "Dear Kellen ... Have I ever told you how much I love the look that you get when you accomplish something new on your own? It's a half-smile, kind of a smirk. Ever since you were a baby, you show your emotions with your entire being. You didn't smile with just your mouth, but with your whole body." —Jodi Reimer

• "He has taught me a lesson I still work through every day — that the value of a life, a human, of a child, is measured not by how much he or she can accomplish, but how much he or she can teach others about what really matters." — Janine Steck Huffman
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