Living With Down’s Syndrome

SUZANNE’S problems, which were diagnosed at birth, were a tremendous shock to my husband, Gil, and me. Suzy was our second child. I was 24 years old, healthy, and had a normal pregnancy, labor, and delivery.

When Suzy was born, she weighed seven pounds and five ounces [3,300 g]. Within two hours of Suzy’s birth, the pediatrician came in and said: “The baby seems healthy, but we are afraid she has a problem. We are quite sure she has Down’s syndrome.” He listed handicaps that she could have: a heart defect, hearing and vision problems, severe mental retardation, susceptibility to respiratory infections, hip problems that could mean she would never walk normally, poor motor coordination, and a short life expectancy. Then the doctor rather abruptly left the room. I found out later that he did so because he was crying.

I asked the nurse to bring the baby to me. As soon as I held Suzy in my arms, I knew she was different. She was so relaxed, so floppy, not at all as her sister had been as a newborn infant. But she was a precious life to be nurtured and loved.

Gil and I prayed to Jehovah God together, holding our little daughter close to us. We determined to care for her as best we could with God’s help.

Many of the hospital staff were surprised when they learned that we planned to take Suzy home instead of placing her in an institution. But the pediatrician and the obstetrician were encouraging, telling us that studies indicated that children with Down’s syndrome seemed to do better when raised at home. Family and friends were very supportive. They immediately came to see us and brought flowers and gifts for Suzy.

Activity to Stimulate

We wrote for information about mental retardation and Down’s syndrome from every source we could find. At that time there were no infant stimulation programs as there are now. But the University of Minnesota was doing an experimental study in this area and shared much information with us.

Gil and I determined to provide Suzy with as much physical and mental stimulation as we could. Rather than just let her lie in her crib, we would bring her into whichever room of the house there was activity. She sat with us at the table while we ate our meals, and went shopping with us and to restaurants and other places.

When she was in her own room, we made sure she had brightly colored objects to look at, and we often had the radio on or played records for her to listen to. We also spent a lot of time playing with Suzy to encourage her to exercise her muscles. Her sister often played with her and talked to her too.

With encouragement, Suzy made progress. At 11 months she finally sat up alone. She walked alone at three and a half years. These achievements prompted major celebrations in our family. Suzy was so proud of herself that she would smile and clap her hands with delight. Although she responded to sound and made the usual baby noises, it was several years before she said her first words.

From the time she was just weeks old, we took every opportunity to read to her. She loved the publication My Book of Bible Stories. Each night before bedtime, she would say, “Book, book,” and I would sit down with her and read one of the stories. I wasn’t sure how much she really understood, but one evening she pointed to a picture of Adam and Eve being expelled from the garden of Eden and said, “Naughty, naughty!”

She was always included in our family Bible study, and while her participation was limited, she sat quietly and seemed to enjoy the study. She had her own book, of course. And prayer was important to her. For example, she would not eat until prayer was offered. If someone happened to forget, she would remind him by frowning at him and saying in a loud voice, “Prayer!”

When we talked about the Bible, I would tell her about the Paradise to come here on earth and that some day Jehovah would make everything perfect again. Suzy would then be able to read and talk, run and jump, and never be sick again.

Meetings at the Kingdom Hall of Jehovah’s Witnesses were enjoyable for Suzy. She loved her friends there and they loved her. She loved the songs and would accompany the congregation’s singing by waving her arms in time to the music. At a very early age, she also learned to sit quietly at meetings.

Special School

When at the age of five she began attending a special school for mentally retarded children, her teachers were amazed that she could sit so quietly. But that did not mean that Suzy was always a model student. We learned early on that she could be as mischievous as any child and needed discipline.

Since we had been told that Suzy might never walk, when she did, we were delighted. At school she received occupational therapy to help her learn to walk more normally. We were given instruction so we could help her with exercises at home. Her school program was carefully worked out at a meeting each year with her teachers and therapists. As parents, we really appreciated being able to participate. It ensured continuity in what Suzy was learning at school and at home. Emphasis was on self-help skills, such as dressing, eating, grooming, preparing simple foods, washing dishes, and making beds, as well as language development.

Although Suzy would probably never learn to read, she was learning to identify important words. How thrilling it was when, at age ten, Suzy was able to recognize some words spontaneously!

One of the hardest things for mentally handicapped children to learn is to concentrate on a project until it is completed. Suzy would quickly lose interest in the simplest task, even playing with a doll or other toy. To increase her ability to stay with a project, her teachers at school and we at home would begin by just expecting a few seconds of concentration before giving her a reward, either a verbal “good work” or perhaps a small edible treat. In this way Suzy would feel a sense of accomplishment. Gradually, over the years, the time expectation was increased.

When Suzy was 13, tests determined that she functioned at about the level of a 2-year-old child. So working with her required much patience, especially when it came to toilet training and feeding and dressing herself. But we felt it was important for her to be as independent as possible. Progress was slow, but it was there.

We were grateful that we could raise Suzy at home, rather than place her in an institution. But that is a decision each family has to make for itself, since each situation is different. Some handicapped children have such severe problems that it would be extremely difficult for them to be raised at home.

There were many things that we could not do as a family because of Suzy’s limitations, and naturally we wanted our other children to live their lives as normally as possible. We found that while they may have missed out on some things, our children learned patience and understanding and developed a compassion for others that many people never experience in a lifetime.

Final Illness

Suzy’s health problems gave us many worries over the years. They were harder for us to deal with than her mental retardation. We felt that she could always learn new things, albeit slowly, but we felt so helpless when it came to her illnesses. No matter how hard we tried to keep her healthy, she was always getting sick. She never made it through a winter without at least one major illness.

Suzy’s final illness began one winter before she was 15 years old. She had to be hospitalized with pneumonia. By this time she had progressed to the point where she could say some simple phrases and sentences. During one of my visits with her at the hospital she said, “Hi, Mom. No school today.” The nurses and I couldn’t help laughing. There was Suzy, in her oxygen-humidity tent (her house, as she called it), very sick with pneumonia, and she was concerned about school.

A week after being admitted, the doctor said that she was better. One evening we left the hospital at ten o’clock. Shortly after 11, just after we had gone to bed, the telephone rang. The nurse was crying. “You’d better come at once. Your daughter has taken a turn for the worse.”

We got to the hospital as soon as we could, but Suzy had died. The doctors explained that two nurses had been with Suzy, settling her down for the night, when suddenly she had trouble breathing. They immediately got help, but Suzy’s heart just stopped, and they were unable to revive her.

We never fully realized how many people had been touched by our Suzy. Nearly the entire staff from her school, as well as other friends and relatives, came to her memorial service. We received cards and letters from people we hardly knew but who knew Suzy. It was very comforting.

After her death, we experienced grief far worse than we did during her life. At times I would be overwhelmed with grief and would burst into tears at the most inopportune time. I couldn’t understand why Jehovah wasn’t ending my grief. But Gil and my Christian brothers and sisters were very patient with me, and I began to see that I was expecting God to remove the grief right away, which was unrealistic. Time and continued reliance on Jehovah made the grief easier to bear.

The Resurrection Hope

Now Jehovah’s promises for the future in his Paradise on earth under Kingdom rule have a deeper meaning for us. We look forward to seeing Suzy again in the resurrection. (Matthew 6:9, 10; John 5:28, 29) Since she is asleep in death at present, for her it will be like going to bed one night, a sick little girl with so many handicaps, and then waking up the next morning to a happy, beautiful life in God’s new world.

More and more, as time goes on, we think of Suzy, not as she was, but as she will be in that restored Paradise. What will her interests and talents be? Since she liked music, I know that she will enjoy it to the full then. Will she paint pictures with me and enjoy sewing and learning how to crochet? Will she enjoy reading and cooking like her sister, Cari? Will she have a talent for detail and mathematics like her father and her brother, Mark?

We know that Suzy will be thrilled to be able to run, dance, and play without being physically limited. We know she will love being able to find the words to express her feelings. And we know she will enjoy the flowers, the songs of birds, the sunshine, the blue skies, the fluffy clouds, the sparkling water of a lake, and the gurgling sounds of a stream. How thrilling it will be for us to watch her absorb all the wonders of life and to help her learn!

We do miss Suzy very much, and there will always be an empty space in our family until we have her with us again. Meanwhile, it is comforting to know that she is in the memory of our loving God.

The resurrection promise, the help we have from God through prayer, association with our Christian brothers and sisters, and the guidance from God’s Word enabled us to face the challenge of caring for a special child and the pain of losing her.​—Contributed.

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Suzy could be as mischievous as any child

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Suzy’s health problems gave us many worries over the years