Against All Odds

When I had a baby with Down’s syndrome, I found how alone the parents of a handicapped child can be.

Two hours after my third child, Leslie, was born, the doctor came in with the bad news.

Have you seen your baby yet?” he asked, wondering why I hadn’t already suspected something was wrong. But no one in the delivery room had recognized the characteristics. Only Leslie’s weak muscle tone had caused concern, so I held her for just ten minutes before they took her to the nursery for monitoring.

Physically she’s doing fine,” he began, “but …” He hesitated. Until that moment I hadn’t considered that she might be anything less than perfect. But as he spoke I felt like I was shrinking into a tiny me instead of myself, as if to create a buffer for what I knew was coming next. The “but” could mean only that something was wrong with her brain.

You’ll notice,” he continued, “her eyes are slightly slanted.”

I knew immediately what it must be.

Down’s syndrome,” I said.

Yes.”

He went on to point out some of the other traits: small ears, fatty neck, flat bridge of the nose, oversized tongue, short, tapered fingers, and a space between the big toe and the other toes.

How long will she live?” I interrupted.

She’ll have a normal life expectancy,” he replied. I had a vision of my husband and me in our old age with a retarded, middle-aged woman in our home.

He told me he saw no sign of the sometimes fatal heart defect that accompanies 40 percent of Down’s syndrome babies.

Thank heavens,” I said, but “Damn” is what I thought. If she were to live only a short time, we could shower her with love, and after she was gone we would be left with a beautiful memory. We would grieve, but we would heal and perhaps try again for a healthy child. Instead we will grieve all our daughter’s life, and the course of our lives would change.

During the first few days home from the hospital my emotions oscillated from deepest sadness to exhilaration at facing the challenge before me. I needed my husband so intensely the first day at home that I felt our love had gained a dimension overnight, reaching a new level of patience, appreciation, and peace. But as life started to return to normal—as our relatives returned home and our friends stopped coming around so frequently—I felt myself missing that intense emotional stimulus. With each well-intentioned phone call. I felt resentment mounting.

You’ve accepted this so well,” my friends would say while I stifled the bitterness I felt toward them for their perfect little children and their perfect little problems. They could get in their cars and go back to their normal lives while I had to muddle through another day.

God wouldn’t have given you anything He didn’t think you could handle,” I would hear, which always brought to my mind the story of the poverty-stricken woman in Houston a few years ago who threw her six children into a muddy bayou. Two of them drowned. Had God misjudged how much she could bear?

God must love you very much to have given you this special gift,” people said. I would like to think I was chosen to raise this child, that there would be some big payoff later. But so far no parent of a handicapped child has admitted, “Yes, this is the best thing that ever happened to me.”

The most frequent remark I heard was, “Down’s Syndrome children are so lovable and adorable.” That’s fine, my husband, David, said to me, if you’re talking about a cocker spaniel. But Down’s syndrome children grow up to be not-so-adorable adults. The baby I had hoped to have was supposed to grow into a creative, intelligent woman of poise and vigor. I couldn’t make myself say the word “retarded” for months. Instead I told some people that Leslie was born brain-damaged because it seemed to elicit sympathy rather than repulsion.

Alone at home with the children every day, I had little diversion from my sorrow. Then I discovered there was another feeling that could fill that emotional void, a feeling I could deal with better than grief—anger. I was angry, to begin with, that David and I had to struggle to find the information and support we needed as new parents of a handicapped child. When the hospital staff, the pediatrician, and the obstetrician didn’t produce so much as a pamphlet, David set out to forage for information. He returned first with two enormous medical volumes borrowed from a family practitioner and former neighbor. Although we never admitted it to each other, I feel certain that the ferociousness with which we tore into those books was motivated by the same fear. We ignored the five-year-old whining for a popsicle, the three-year-old crying to be held, and the baby fussing to be nursed as we sought assurance that we had not caused the defect. I worried if starting on the pill too young, using the wrong brand of spermicidal gel, indulging too frequently in Dr Peppers and Milky ways, or other youthful indiscretions might be factors. But we found nothing in our reading to make us feel guilty. We also found nothing about rearing Down’s syndrome children. So David set off for the Corpus Christi public library. The most recently published books were not available, and anything written before 1980 was outdated and depressing.

Even a trip to the geneticist ten days later for the results of a blood analysis yielded only more irrelevant photocopies. The life-expectancy figures given were half of what is now considered normal, and an outdated IQ chart included scores from Down’s syndrome children who had been placed in institutions at birth—today most live at home.

As David and I sat silent and tense in the geneticist’s waiting room, I realized we were alone for the first time since Leslie’s birth. I watched David as he absent-mindedly flipped through a magazine. Sadness had made his face look older, and I hadn’t realized how gray his hair had

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