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.
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 become. His life had not been easy; his father and sister died when he was young, whereas my life had been comfortable and easy. I never thought “Why me?”—I felt I was due my share of pain eventually—but this wasn’t fair for David.
A few minutes later the geneticist summoned us in. As we stared at pictures of our daughter’s chromosomes—paired and numbered gray worms—the doctor explained that Leslie’s kind of Down’s syndrome, nondisjunction trisomy 21, occurs in 95 percent of the cases. It happens when a genetic fluke in either the sperm or the egg leaves an extra, free-floating chromosome 21. The surplus genetic material in that third chromosome results in the deformities. The two other kinds of Down’s syndrome are translocation trisomy 21, the only hereditary kind, and mosaicism, which occurs after conception, during early cell division. Mosaic individuals may have few Down’s characteristics and, rarely, normal-range intelligence.
In the general population Down’s syndrome (named for John Langdon Down, who described it in 1866) occurs about once in every 800 to 1,000 births. Incidence rises with the mother’s age. Since I was 31, my chances were 1 in 826—not high enough for doctors to routinely recommend various tests for fetal abnormalities. Also, I remember thinking, “Why rush to the doctor now that I’m pregnant? I’ve been through this before.”
When Leslie was two weeks old, we took her to the infant-stimulation program at the Nueces County Mental Health Metal Retardation Infant Development Program. We had been reading about the marvelous success of infant-stim elsewhere in dealing with newborns with a variety of handicaps. The geneticist had recommended that we enroll her as soon as possible, and we also felt we couldn’t lose even one day. The social worker at the program encouraged us to bring Leslie in, but when we got there, we heard remarks like “How can we assess a baby that’s not doing anything yet?” Surely we weren’t the first parents to bring a new-born to the local program. Right then I wanted to pack up and move. We could expect to know the severity of Leslie’s retardation around the age of three or four (most Down’s syndrome children are mildly to moderately retarded), but then it would be too late for early training.
Although the MHMR therapists questioned the value of working with such a tiny infant, they did put Leslie on a weekly home-visitation program. Now, at a year old, she goes to the center two mornings a week. To build muscle strength and balance, she sits on a giant, slightly underinflated ball and works to right herself as we tilt her from side to side. We hold out rattles to stimulate reaching for objects and to teach cause and effect, and we imitate her so that she, in turn, will try to imitate us. The program has made us feel that we are accomplishing something, but it also increased our frustration. Simply because they have larger Down’s syndrome populations, big cities can offer more extensive programs.
Continuing to seek others in the same boat, we joined a support group sponsored by the local school district for the parents of children with handicaps. The meetings were held at a physical rehabilitation center, a building near my home that I had passed every day, never imagining I would have reason to go inside. When I located the room for the handicapped children, I was surprised to find that I knew two of the mothers. A whole new world had just been made visible to me. I felt like I was on another planet.
But once again I found as much frustration as help. Those parents had older children. They were struggling with issues as diverse as seizures, discipline, masturbation, and how to toilet-train retarded pre-teens. How were they to find the time and effort to assist the bewildered parents of an infant? One woman had a brain-damaged who could do nothing for himself and who, at the age of eight, recently giggled for the second time in his life. His mother had no idea what struck him as funny. I could understand why there was some resentment toward me and my baby—a child who I felt sure would eventually walk, talk, laugh, play, read, and go to the bathroom unassisted.
But if I didn’t find the answers to all my problems, I did learn from other parents that I could turn my frustration in positive directions. Grief immobilizes, anger motivates, and I had plenty to be angry about. Corpus Christi, for example—like most other cities in Texas—does not regularly place handicapped children in normal classrooms. I have witnessed other mothers struggle to gain the smallest advantages for their children, such as having lunch with normal kids. It takes time, it takes tact, it takes being informed, and it takes a unified voice. I could see my anger taking the form of a mission.
I’m now busy trying to resuscitate the parents club at MHMR with a newsletter, speaker programs, and fundraisers. I’m a volunteer parent assistance specialist with PATH (Partnerships for Assisting Texans With Handicaps), a federally funded statewide program. I’m on the advisory board of the new Project ABC (Any Baby Can), a resource and referral program at a local hospital. And I have started a Down’s syndrome parents group that meets in my home every other Monday night. There are only five or six of us, with children of all ages, but we get together to share information, anecdotes, and tears. We’re also there to help new parents as well as parents of unborn Down’s syndrome babies who are considering the option of abortion.
My best friend cautions me not to define myself by my misfortune. Another badgers me to take it easy, to slow down and give myself a break. I should stop and appreciate Leslie and love her as she is, that friend tells me. But although I have made peace with the idea of not having a tranquil old age, I’m not comfortable, as many parents are, with the prospect of caring for my child after she finishes school (for Leslie, that will be at 22). The outlook for a handicapped person’s adult years is quite grim unless the individual reaches some degree of self-sufficiency. Excellent programs—support groups for brothers and sisters of handicapped children; programs to help disabled adults move from school to work—are happening in other parts of the state and around the country, but it will be a big job for us to help bring them to Corpus Christi.
I do love Leslie. She’s a chubby, happy, beautiful baby. But as she gets older, her Down’s syndrome characteristics will become more pronounced. I hope someday I will swoop her up into my arms, squeeze her, and tell her I wouldn’t have her any other way, but I resent the way she has saddened and complicated my family’s life. Although my husband seeks out older Down’s children to find out what they’re like, I avoid them. I can’t yet face what she will become, and I harbor a fantasy that she will be the first known trisomy 21 with normal intelligence. And I wonder if I’m working so hard to make Leslie more acceptable in society for my sake or for hers. Does it matter how “normal” she can become? Will she care?
But I can’t stop my activity. I hang on to it like a drug because it’s what finally made me stop crying. And I can’t get out of my mind a morbid conversation I overheard at the first parents meting. Two mothers of Down’s children were discussion what they would do if they lost their husbands and it appeared they might die before their children. With chilling quickness they agreed that rather than leave the children alone in the world, they would kill them and themselves. The only question was the method: guns or poison. That is why I can’t stop. I don’t want the world in which Leslie grows up to be one in which killing appears a humane alternative. We cannot afford to take it easy.