"It may sound contrived, but Penny has revealed to me a much deeper and fuller understanding of love."
—Amy Julia Becker, author of A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny
"Thomas' arrival dismantled my paradigm of faith and required me to construct one that had room for the complexity of the experience, and that construction is an ongoing effort."
—Kathryn Soper, The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery
In powerful and poignant separate memoirs, authors Amy Julia Becker and Kathryn Soper share their individual journeys as mothers of children with Down syndrome. Revealing both the struggles and joys of raising a child with special needs, each woman also discloses the challenging theological questions she wrestled with along the way.
Patheos invited each author to interview the other as only one such mother to another could do. Their gracious responses follow.
Amy Julia Becker: You write about teaching your children to look for Thomas' gifts as he grows up. Now that he is older, have you begun to see some of those gifts?
Kathryn Soper: Yes, many gifts, from cognitive to social to spiritual. At age six Thomas, has not yet spoken his first word, but his understanding of the world continually surprises us. He has strong right-brain skills, including a passion for numbers and patterns; he can play simple melodies on his keyboard—a few months ago he shocked us by playing the Star Wars theme!—and he scolds me when I take a "wrong" turn in the car (meaning, a turn that doesn't lead to one of his favorite places). His straight-up approach to life reminds me to shed self-consciousness and live authentically, and his straight-up approach to people reminds me to be no respecter of persons.
These are just a few examples, and I suspect we'll see even more gifts emerge as Thomas continues to grow up. I think, though, that his most valuable gift is one he had from the day he was born: the gift of leading us to confront the fears, biases, and distortions in our minds and hearts that limit our joy.
How has Thomas' presence in your household changed your other children's perspectives on achievement and intelligence?
He challenges the assumptions they've absorbed about how human worth is manifest. This hasn't been an easy process—each of my kids has had to wrestle with unanswerable questions and face difficult realities about how their little brother's disability impacts his life as well as their own. But each of them relates to Thomas in ways that bring not only insight, but delight. They see how he communicates without speaking a word, and know that verbal skill is not a measure of intelligence. They see his humor and interests and quirks, and know that intelligence takes many forms. They see him grow, and know that progression is not a means to an end, but an end in itself; that learning is a human joy no matter what its relative pace.
In short, every day they're presented with evidence that academic intelligence is not a measure of personhood.
What role did your faith play in accepting Thomas' diagnosis? Were there any ways in which your faith hindered you from accepting him?
Before Thomas arrived, I was willing and able to accept tidy explanations for complicated situations so that I could feel safe in a chaotic world. But his arrival dismantled my paradigm of faith and required me to construct one that had room for the complexity of the experience, and that construction is an ongoing effort. There was nothing in my religious perspective that hindered my acceptance of Thomas, but there was much that hindered my acceptance of myself as his mother. It's been revelatory to learn that even a mother is nothing more or less than a human being. As I evolve in that role, I find neatly packaged religion less and less satisfying and find myself drawn toward process theology and other dynamic approaches to God, as seen through the lens of my Mormon faith.
You write about the stereotypes associated with Down syndrome and also with mothers of children with Down syndrome. The stories of these mothers are exceptional or extraordinary in many ways, and yet you insist that there's nothing special about you, or the rest of us. You conclude, "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." How has Thomas helped you become wonderful (in the best sense of that word)? What do you think it would take for women who don't have children with special needs to experience something similar?
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