Sharmayn’s Farewell

By Isaac C. Ferguson

The Saturday morning sun had just pushed over the Wasatch Mountains as I left my car and hurried through the hospital doors. My wife, Gloria, had called about six o’ clock with word that Sharmayn, our eleven-year-old daughter, was failing rapidly. Gloria was anxious that I come to be with them.

We had lived in dread of this day ever since Sharmayn was five months old. The cystic fibrosis that was diagnosed at that time had steadily damaged her lungs despite our efforts and all that medical science could do to slow its progress. During the previous year Sharmayn had spent more than half her time in the hospital receiving intensive physical therapy and intravenous antibiotic drugs for the stubborn chest infection.

Yet she had mastered the ability to take her disease and the treatments in stride. Out of the hospital, she was always eager to get back to school, church, and physical activities. Her determination to participate in sports waned only in the last two or three months as she had become thinner and so weak that it was impossible to continue. But her spirit remained strong, and she wanted everyone to know by her actions that she was in control of her life and would make the best of it.

I remember how, only a few short months before she began to fail, she returned to the hospital on her eleventh birthday with one special gift—a pair of roller skates. The hospital corridors were a perfect arena. For about a week she put the skates on upon awakening and took them off only at bedtime. Needless to say, the hospital personnel were a bit nervous about the little “Roller Derby queen” with the IV apparatus in her arm, but she was determined to live life to the fullest. “If I could be any age,” she wrote in her journal, “I would be the age I am.” She lived for today.

Once when Sharmayn was in the hospital, a baby was admitted to a room near hers. Two of the baby’s grandparents had come from out of town to be with the baby and were concerned about leaving the baby while they went to their motel for the night. Sharmayn told them not to worry, that she would personally care for the baby. When they came the next morning, there was Sharmayn sitting in a rocking chair next to the crib, asleep, with her finger tightly held by a contented baby. She had that kind of quality about her.

At school she had insisted on swinging the bat in softball games despite her growing dependence on a portable oxygen unit which became a constant companion. Her classmates had devised a “pinch runner” system which allowed her to participate. One of her friends, obviously disturbed by her deteriorating condition, confided that he had known Sharmayn for more than two years, but had never heard her complain. Another told his mother, “Sharmayn is not a quitter.”

One of her goals was to be a baseball player, complete with uniform and a “real coach.” When she was nine, she accomplished that goal. She played on the team that came in first in their tournament. Sharmayn made a hit that brought two very important runs in. She was delighted.

Another goal was to have one hundred percent Primary attendance. She reached that goal, too, with the wonderful help of loving teachers and presidency who sometimes gave her lessons at home or in the hospital.

She was goal-oriented. “Some things I’d like to do when I get older,” she recorded, “are drive a car, and discover a cure for something. I’d like to be a nurse. But while I’m still a kid there are some things I’d like to do: learn a joke that nobody else knows, and win an award for being brave.”

Now as I impatiently boarded the hospital elevator, I thought of what the doctors had told us two weeks earlier: there was probably little more to be done for Sharmayn. She had understood her condition, but had decided that even though it was the ninth inning and she was trailing in the score, she wanted to have her last turn at bat. She had quietly told us she could not just quit, and we assured her of our support. Although we had thought we would like to have her home during the last few weeks, our admiration for her courage and fighting spirit would not let us deny her the opportunity to keep trying.

Gloria and I had decided months before that, without seriously neglecting the other children, our top priority would be Sharmayn. We wanted her to know that we loved and supported her. Gloria was an outstanding mother. My love for her deepened immensely as I watched her painfully care for our dying child. Kind and patient, yet firm and resolute, she had become Sharmayn’s most intimate and trusted friend.

One of Sharmayn’s expressed fears was that she might die alone, without the support of her family. We assured her this wouldn’t happen and made a commitment that one of us would stay with her night and day.

Those two weeks proved to be a glorious experience for me—caring for her every need, applying a cool washcloth to her forehead, supplying ice and a drink of soda water, getting cold cereal (about the only thing she would eat those last few weeks), carrying her to the bathroom because of her weakened condition, bathing her and watching her enjoy the freshness it brought.

The first week of her last hospital stay was not particularly eventful. As dozens of times before, Sharmayn reluctantly accepted physical therapy four times a day and the inconvenience of multiple doses of intravenous antibiotics. Her deteriorating lungs had left her very tired and she had great difficulty breathing. She spent most of her time in a sitting position, leaning forward with her head down and resting on a pillow. At times we could scarcely determine whether she was sleeping or simply concentrating on assuring herself another breath.

One evening during those last two weeks we brought Sharmayn home in a wheelchair to see her thirteen-year-old brother, Shawn, receive his Eagle Scout award. Among her many goals, being there for that occasion was one of the most important. As a parent, I was touched by her satisfaction and pride in her brother’s achievement, despite her weakness. She expressed gratitude that she could participate.

When we suggested she come home with us for a few hours on Sunday, Sharmayn said she would love to, but was so tired she just couldn’t. We knew then that life was weighing heavily upon her frail body.

On Tuesday, Sharmayn was extremely quiet. We took her for a short ride in her uncle’s sports car, an experience she had challenged herself to have. Though very tired upon returning to her hospital bed, she wrote a letter to Shawn, a methodical and laborious task, taxing her both physically and mentally. The words came slowly, and her hand trembled noticeably. When she finished, she sealed the envelope and asked her mother to put it away in her dresser at home until “after.”

Concerned, Gloria asked if she would like Shawn to come home early from Scout camp.

“No, I want him to finish,” was her quick reply.

Despite her fatigue, she wrote another letter, this time for her six-year-old adopted sister, Kiera. (She had written one to Kiera three weeks earlier, but said another one was necessary because she didn’t feel the first had expressed enough love.)

On Wednesday, as we sat together in the hospital room, she made an unusual request for her last payday’s allowance of two dollars. Thanking me for the money, she carefully folded one of the bills and placed it in the drawer of her hospital tray. The second she folded also and placed back into my hands saying, “Would you please put this in my tithing envelope? I want to pay up good.”

There was an uncanny urgency about her relationships with others also. On Thursday afternoon her good friend, Mike Black, and his mother, Mary, came to visit. Mike’s gift of a jar of Swedish raspberry candies with a prominent number “one” taped to it brought a reminiscent gleam to her eyes. As they left, Sharmayn lifted her head from the pillow on the tray in front of her and said, “Mike, thanks for being my friend.”

The nights became restless as the week drew on. Sharmayn sometimes talked deliriously or behaved irrationally. The days were better, although occasionally she seemed to be far away from us.

Sharmayn was surprised to see me Saturday morning when she awoke about nine o’ clock. She knew that I had planned to stay home with Kiera and go to the hospital later in the day. But I immediately understood why Gloria had called me to come. Every physical movement was a great strain for Sharmayn, and she was extremely pale and having great difficulty breathing. Her effort at eating was a meager one or two bites. Her poor appetite, coupled with the complications of the disease, now left her at a scarce thirty-seven pounds.

It became obvious that she was slipping away fast. When she didn’t respond to us, we asked the nurse if we were getting close. She nodded, “Yes.”

Our first thought was to contact Shawn at Scout camp and hasten his return, even though he was due home that evening. I hurried to a telephone and called our neighbor, Sister Hixson, asking her to go to our home and find Shawn’s phone number at camp. As I waited, she ran to our home and found Shawn at the telephone trying to contact us. He had returned earlier than expected and sensed something was wrong. Sister Hixson told me she would hurry him to the hospital, about a twenty-five-minute drive.

When I returned to the solemn atmosphere of the hospital room, Sharmayn was in obvious distress. She raised her head, looked squarely at her mother, then at me, and hesitatingly forced her first “Bye.”

Panic rushed through me. Looking back, I don’t believe it was surprise but rather the startling realization that separation was near. I feared that Shawn wouldn’t get there in time. They had been so close and had had so many good experiences together. I pleaded for time.

“You can’t go yet, Sharmayn. I have just talked to Shawn on the phone. He’s coming with Sister Hixson and will be here soon. Please hang on.”

Her response, a gentle nod, was slow to come. She then asked for a blessing. My father, who had arrived earlier, anointed her with consecrated oil, and I conferred a blessing of peace and comfort upon her. Although conflicting feelings moved through my soul, the Spirit was strong and sweet.

Following the blessing, Sharmayn relaxed and I sensed a need to keep her awake and as mentally active as possible. Gloria and I both repeatedly expressed our love for her during the next few minutes. Each time she replied, “I love you too.”

I asked if there was anything she wanted us to do for her. It seemed a very long time before she raised her head from the pillow and made her first request.

“I want Melissa Winn to go to CF (cystic fibrosis) camp in my place.”

Melissa was her close and trusted friend, handicapped by a moderately severe hearing loss. Their relationship over the previous five years had been very tender and reassuring to both. We assured her Melissa would go to camp.

After a few minutes, Sharmayn raised her head again. “I would like Shawn and Kiera to go through all my things. They can have whatever they want.”

Tears streamed down Gloria’s face and my own as we witnessed the verbal last will and testament of a very mature eleven-year-old girl.

Her last request came: “I want Kiera to have my bike.”

Her modified girl’s “dirt bike” was her pride and joy. Sharmayn had closed out her savings account of about ninety dollars a year ago so that she could refurbish the bicycle, complete with mag wheels, a new seat, handle bars and grips, racing pads, and new metallic blue paint. All the trimmings were in red.

Her unselfishness and presence of mind were almost more than we could bear, but she was resolute. Through a flood of tears, I promised her we would honor all of her requests. Her eyes expressed a gracious thank-you.

Each time the door opened, we fervently hoped it would be Shawn. The few minutes we waited for him seemed interminable.

While waiting, we had Kiera come in and say her good-byes. Despite her weakness, Sharmayn raised up in the bed and fully extended her arms to accept Kiera. She spoke strongly through the crackling mucous that filled her lungs as she caressed her younger sister.

“I love you, Kiera. You have been a good sister. Thank you.”

The outpouring of love was as genuine and sincere as I have ever witnessed. She radiated a compassion much beyond her years.

Finally the door opened and my father entered, escorting Shawn in a Scout uniform soiled by a week at camp. Tears were already in his eyes as he rushed toward her. As Sharmayn saw him, a faint smile came upon her face and she lovingly extended her arms to him.

“I love you, Shawn. You have been the best brother to me. Please follow mom and dad.”

“I love you too, Sharmayn. I love you.” Shawn’s reply did not come easily. Normally expressions of love came freely at our home, but the emotion now made it difficult.

For the first time in several days, Sharmayn sat back in her bed against the pillows which had been propped behind her. “Bye,” she said quietly, peacefully. “Good-bye … Bye …”

Our only responses were, “Good-bye, Sharmayn. We love you.”

Her parting comment as she drew her last breaths came as naturally as if she were going to play at a neighbor’s, “See you later.”

It was difficult to believe this was happening, to her or to us. I sat behind her on the bed in amazement, her mother comforting her at the bedside.

As she drew those last few breaths, a remarkable thing transpired. Her arm suddenly but gently raised from her side with the elbow slightly bent. My reaction was to return it to her side, thinking this movement was an involuntary nervous system reaction. But her arm was consciously raised and did not want to return to the bed. She held it in the raised position for a few seconds. Then the arm relaxed and gently fell back to her side.

Sharmayn’s eleven-year ordeal was over. There was a burning in our hearts, sure and strong, that gave us comfort and peace. Our testimonies were more resolute than ever that the Lord lives, that spirit and mortality are both real, and that Sharmayn, though young and mortally inexperienced, had developed a deep understanding of Heavenly Father’s plan.

Our experiences with Sharmayn heightened our sensitivity to our relationship with God. As Sharmayn’s spirit left her body, Gloria and I had no doubts that Jesus Christ is real and that he is the Redeemer of the world. And our little girl, who loved so much to be and have a friend, is now safe with her greatest Friend.

A wise and caring nurse shared a feeling which will ever be with us; “Sorrow is a patient and determined teacher. What I was I shall never be again.”

Behind the Gates of Tomorrow

I have cystic fibrosis, which is a deteriorating lung disease. As I look through my gates of tomorrow I know my pathway won’t be as long as others’. This has caused me to live one day at a time and enjoy life while I can. I spend a lot of time in the hospital. I see many chronically ill friends that give up; some are ornery, and some of them have even quit school. I feel that giving up is the easy way out.

I want to feel good about my life. In the past I’ve worked at being a good baseball player, a good student, and a good friend. In the future I see more happiness. I see sharing time with friends, attending cystic fibrosis summer camp, vacation trips, and special times with my family. I want my future to be full of trying and having courage.

This essay was written for the 1980 Utah PTA Reflections Contest, only months before Sharmayn died in August 1980.

• Isaac C. Ferguson, assistant commissioner of LDS Social Services, serves as a high councilor in the Bountiful Utah East Stake.

Illustrated by G. Allen Garns