“Sharing Sarah: Our Down’s Syndrome Baby,” Ensign, June 1981, 32
Sharing Sarah:
Our Down’s Syndrome Baby
Once the possibility had been suggested, our doctor left me alone with my new daughter to see for myself. He had mentioned a few of the signs: low placement of ears; flat nose; short, stubby hands and fingers; large cleft between big toe and little toes; umbilical hernia; simian crease in hands; mongolian fold in eyes. She was so tiny and new—not beautiful, really, but cute, adorable.
It was late evening, and no one bothered me. No nurses came. I examined her from head to toe and found some of the signs to be possible. She was so little it was hard to tell. But even then, without clinical verification, I sensed it was true. Our little girl was mongoloid: born, as I was later to know, with Down’s Syndrome.
Cuddled there together in a darkened hospital room, I felt we faced a menacing world. I carried the memory of a shallow conclusion formed years earlier that the greatest gift a man could possess was a brilliant mind, the greatest curse, a dull one. I had actually expressed it: “Give me a child with physical handicap, never a mental.” From my elementary school days, I remembered two small brothers who said very little and clung to each other on the playground. None of us played with them, and none of us seemed to know where they had gone. There was a foster child placed with a family in our neighborhood, a little girl who watched us enter the chapel each Sunday with slow gaze and heavy tongue. I winced as I applied these memories to our tiny daughter. Of my little Sarah I asked overwhelming questions, “What kind of person will you be?” “What will people do to you?” “What will your dreams and heartaches be?” “Will we be able to teach you?” My husband and I together asked the age-old question: “Why was little Sarah born this way?” “What did we do wrong?” (We remembered the ancient question, “Who did sin, this man, or his parents, that he was born blind?”—John 9:2.) Now, as we look back on Sarah Jane’s short four and a half years of life, we have found at least partial answers to these questions.
In answer to the first question, “What kind of person will you be?” our doctor assured us that she would be lovable. The best possible thing, he said, would be to take her home and love her. That was a good beginning.
The other questions were not so easily answered. But since most of my husband’s university experience had been in child development and psychology, he knew where to begin. We read books and visited a center for developmental disabilities. They gave us instructional material and moral support. We received regular visits from our county health nurses. But our most comforting resources were other parents of handicapped children. We traveled with our two-week-old infant to a “Parent-to-Parent” group in Salt Lake City. A woman there touched me. “My little daughter,” she said, “was born following three healthy boys. She is the light of my life.” I clung to that.
As we learned, we taught others. We decided to share Sarah with all who were interested, The Sunday Sarah received her name and blessing, Glenn announced to the congregation that she had a unique mission in life and that we were not sure yet what it would be. Everyone was warm and interested. Some families in the neighborhood made a special project of Sarah. They visited and brought little gifts. They always spoke to her. Certain she was among friends, she developed a bright response and a ready smile.
I had feared most the answer to my second question: “What will people do to you?” From the beginning, we discovered that this depended largely on us. Sharing Sarah openly helped a great deal. I dreaded the natural, open questions of children, not knowing in advance what I should say. Simple answers proved the solution to simple problems.
Each week as my piano students came for lessons, they greeted Sarah and sometimes played with her as she sat near the piano in her little rocker. When doctors discovered a massive heart defect and recommended surgery, these children and other children in the neighborhood and family gave us great strength through their fasting and prayers.
Once, after Sarah had finally learned to walk in spite of great obstacles (bone infection, heart surgery, paralytic stroke, shortened leg, and a broken leg), a little boy laughed and said, “She walks like a gorilla.” Swallowing my instant hurt, I explained that Sarah had one leg shorter than the other, so it was hard for her to walk straight. The little boy was satisfied.
Many little ones asked, “Why doesn’t Sarah talk?” I always explained that it was harder for Sarah to learn words than it was for them, but added that she could learn if we were careful to teach her. They remained Sarah’s friends.
What people did to Sarah was to care for her, to learn from her, and to love her.
The answer to my question, “What will your dreams and heartaches be?” is only a guess. Sarah was just beginning to want to do more than we were ready to allow her when she passed away a few months before her fifth birthday. She evidenced talents and capabilities full to overflowing that wanted expression.
From infancy she was responsive to music. She loved it. When my students played, however badly, she quieted and listened or bounced her rocker rhythmically. When my trio sang, she clapped and shouted, “Wow!” When the stereo played especially stirring music, she danced, changing her body movements to harmonize with mood and tempo. She had favorites among my piano pieces. Whenever I played a particularly lively Schubert piece, she would come running, climb onto the piano bench, and beat time with me on the high keys. It became a kind of ritual with us, our duet.
We sensed in her celebrations a beautiful spirit. Whenever anything delighted her, she used all her resources to express her feelings. When grandma and grandpa came or the home teachers stood at the door, she greeted them with a big “hiya!” She danced and laughed and hugged and kissed. When we had spaghetti for dinner, she clapped and hollered, stamped her feet, and passed her dish for more. Dogs, cats, horses, birds, and bumpy roads made her lift her arms and squeal and laugh. If she had found any more means for expression, we feel she would have used them.
Sarah had a special sensitivity to peace and happiness. Discord distressed her. If baby Ben cried, she said, “oh, bee,” and pulled me to him, or pushed his head toward me, knowing I could quiet him. If the boys were fighting, she’d bang me on the arm and take me to them, jabbering the story on the way. If a visiting cousin were minus a toy and crying, she would snatch one from her brother and offer it as a solution.
Quite by accident we discovered her fierce desire to accomplish household tasks. Her fussing with the dishwasher turned out to be a desire to help load and unload dishes. Similarly, she demanded to be included in diaper-folding, bed-making, and putting away clothes and toys. Her interference at the dinner table turned out to be a desire to help with the passing. Once we gave her the opportunity, however, she passed food with such gusto we had to stay alert. As she grew older, these desires to help began to expand.
Though it was not always apparent, Sarah helped to keep us all tidy. Thoroughly smeared with spaghetti, she often demanded that we attend to the escaped pea or the spilled milk before she would continue eating. When she and her younger brother Ben were seated at their own small table, she assumed responsibility for him, mopping his face, the table, the floor, running for napkins and tissues, and pronouncing it finished with a big “There!”
Decidedly unlike her five brothers, Sarah expressed a deep femininity. Any hat, shoes, or dress sent her trotting to the mirror, where she cocked her head and turned slowly, acting pretty. Her favorite decoration was a large, lacy doily, my treasure, made by my deceased grandmother. Sarah discovered it no matter where it was. With the doily on her head, she walked a little straighter, regally, peering up through the lace to see for herself just how pretty she looked. She loved to comb her daddy’s hair carefully all around, even sideburns, cranking his head this way and that by the chin and standing back to admire, as though she had a particular design in mind. Like any little girl, she loved to mother. Her little brother Ben was the victim of most of this. She dressed him in his coat, often upside down, and helped him escape from the house to play. Three weeks after Sarah was gone, Ben was still searching the house for “Tah-tah,” his once constant companion.
Somewhat like her father, Sarah enjoyed ritual. She was upset if not always allowed to zip up her sleeper. No matter how prolonged her bedtime antics, she settled to sleep in the same position, placing her two little hands in her daddy’s big one.
Some of her rituals demanded all her strength at times, but Sarah evidenced a Spartan power to endure. With breath and energy failing, Sarah often woke suddenly in the night. Religiously, she would cross the room, turn off her humidifier, and then turn on the light before stumbling to her daddy’s bedside. Occasionally, these duties accomplished, she would collapse on the floor and whimper before she could reach him, but she refused to take shortcuts. Once, following six days of intravenous treatment and liquid diet in the hospital, she was placed on a total fast for tests but allowed to go home. She woke in the morning and, as usual, stumbled to the cupboard for dishes, then stumbled on to set the table before requesting the breakfast we couldn’t give. Just three days before her heart stopped for the last time, we watched her pull herself up the ladder at the park to go down the slippery slide five times.
The answer to our question, “Will we be able to teach you?” is simple. Yes. Sarah learned everything we consciously tried to teach and much that we didn’t. Our big problem was assuming she could not learn. Teachers outside our home accomplished things with her we would not have tried. With her own stubborn insistence, she often taught us she could do more. She learned several words on her own, but we did teach her the word drink. Often Sarah would resort to banging daddy on the arm, pointing to the pitcher and jabbering, but as we worked with her, more and more she remembered the word. She would stop in the middle of the action, duck her head and say deliberately, “dri,” then give a big cheese grin and celebration while dad poured her drink. “Dri” was the last word she ever said. With her mouth full of tubes keeping her alive, we are sure she attempted the “dri” and the grin. Yes, we could teach her.
Sarah’s short life broadened our understanding, increased our compassion. Her life was of value, all of it. To us she was not a partial person, but so whole we were constantly aware of spirit. She reminded us of the frailty of this life and of her need and ours for fulfillment in the eternities. During her time with us, we found ourselves thinking and speaking of her as “our bright spot,” “our little sunshine,” the “light of our lives.” So at last, to the age-old question in its ancient phrasing, “Who did sin, this man, or his parents?” (“Why was Sarah born this way?” “What did we do wrong?”) the answer is the Master’s:
“Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.” (John 9:3.)
The works of God have been manifest in Sarah Jane. In her innocent suffering, she has made us again aware of the sacrifice of “the Just for the unjust.” And through her sweet influence, she has caused a great longing in us to be reunited with her. If we accomplish this, she will have helped us gain eternal life. Then “the works of God” will finally be manifest when both she and we come forth in glory, in the morning of the resurrection of the just.