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Loving Emily
by Mary Wilt

I could talk forever about my 7-year-old daughter, Emily. She is unique, a marvel, like any child. And a joy to be around, except when she terrorizes our cat. Or raids her big sisters' drawers. Or sneaks downstairs in the morning and blasts her beloved Nickelodeon, waking up the whole family.

She possesses a rare sense of humor. Stuck in the line at a fast-food drive-thru recently, I became more than a little peeved. Emily watched as I nervously tapped my fingers on the steering wheel and rapidly changed radio stations. "Mom, were you born crazy?" she asked.

When I took slight offense at this remark, she crossed her little arms over her chest, sagely nodded her head and said, "I rest my case." Somehow, the wait seemed less tedious after that.

If there is such a thing as an ordinary child, Emily is one. She just happened to have Down syndrome. Beside me as I type sits a little human being with an extra chromosome in each cell of her body. All of us-all of us-have some genetic anomalies, most so minute as to be of no consequence. From the moment of conception, Emily had this extra genetic material influencing her growth and development. Yet, these differences do not include anything that should warrant her exclusion from the human race.

The American College of Obstetricians and Gynecologists recommends that certain pregnancies be "screened" for abnormalities, including Down syndrome. As a result, more and more fetuses with Down syndrome are being identified and aborted each year. But the syndrome is not, in itself, severe enough to warrant such outrageous screening, with the subsequent weeding out of individual lives before they are born.

I've seen a few of the pamphlets that are routinely given to women who receive the prenatal diagnosis of Down syndrome. The cold, sterile checklists of symptoms include mental retardation, heart defects and hearing problems. While the clinical descriptions are true, they don't actually describe a living, breathing person. It isn't possible to contain a soul in a trifolded piece of paper.

Does Emily have mental retardation? Yes. Does she have heart defects and hearing problems? Yes. You can check off most of the symptoms from any of those pamphlets. But none of those problems define Emily or even hint at her essence, her personhood, her humanity. That is the danger of one-dimensional information.

Yes, Emily is delayed in most areas. She doesn't learn in the same way, or even the same order, as my two other daughters. But learn she does. At age 7, she is part of a regular first-grade classroom. She prints her name and letters. She counts to 100. She reads a few words. Most children with Down syndrome will learn to read and write.

Emily does look different. She is very cute: blond hair, blue eyes and a winning smile. But there is no mistaking the fact that the extra chromosome has worked its spell on her facial features.

None of these differences interfere with her relationships with others. In fact, she possesses a little extra feeling for her fellow human beings. Once I found her in the time-out corner at her after-school program. I was pleased, if puzzled, to learn that she had done nothing wrong. She had just felt sorry for a little boy who had, and decided to join him for the duration. Her arm around his shoulder, they talked the time-out away.

Of course life with a child with Down syndrome is not always easy, and not always fun. But mother to mother, I ask you: Is life with any child without heartaches and pain? Yes, we have had extra work in raising this child. We have also had extra joy.

Emily is a sister, a friend, a classmate. Her presence among us is benign. What a sad world it would be if all little ones with Down syndrome were not allowed life. A world with no Emilys. A much sadder world, indeed.

Last night, I indulged in that peculiar parental ritual: I watched my child sleep. I brushed her hair back from her forehead and she awoke briefly. "Mommy," she whispered, and then, secure in the knowledge that I was there, she quickly fell asleep again. And I thought, yes, that's the meaning. That's the totality. She is alive and I am Mommy.

Originally published: Woman's Day, March 10, 1998.
Copyright 1998 Mary Wilt. Reprinted with the permission of the author.

This page last updated on 15 April 2008.

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