I wish to relate a modern-day story which concerns a young girl, the fourth child in a family of six children. Her name is Heather. Three of the children, including Heather, suffer from a rare disease called glutaric acidemia. In each case, the onset of the disease occurred during the first year of life when an enzyme attacked the brain, causing paralysis. The disease results in acid forming in the muscles, similar to that which occurs following a period of intense physical activity. The problem faced by the children is that the acid never leaves and causes great pain. Cindy, the first child with the disease, died at the age of 23. She was one of the oldest living persons known with the disease. At death she weighed about 40 pounds.
Soon after Heather's birth, the parents realized that she would be physically handicapped and that her spirit would be housed in a body with great restrictions. As she grew, she was confined to a wheelchair, unable to speak, and could only send messages with her eyes. A direct gaze and a smile meant yes. A blink meant no. Despite her handicaps, one could feel the vibrant spirit inside.
As Heather progressed, it became obvious to the parents that she was extraordinarily bright. She would play guessing games with the family using her limited means to communicate. When she was old enough, the parents enrolled Heather in a special school to see if she could learn to speak. The teacher was a gifted therapist. One morning as Heather and the teacher visited about the prior weekend, the teacher learned that Heather had attended Primary. The teacher then sang for Heather “When He Comes Again” (Songbook, p. 82). The expression on Heather's face revealed the delight within her. When the teacher asked Heather if she had a favorite song, the young girl's wide eyes and engaging smile left little doubt. But what was the song? Through a series of questions, the teacher learned that Heather's song was one she had heard in Primary. She wasn't sure which songbook it was in, but it was about Jesus. The teacher sang all the songs she could think of, but to no avail. However, Heather was not about to quit-she wanted to share her favorite song. At the end of the day, the two were still searching. The teacher agreed to bring her Primary songbooks to school the next day.
On the following morning, Heather and her teacher continued the quest. From the first hymn to the last, the little girl blinked her eyes indicating no. They were still unsuccessful. But Heather was not about to give up. She wanted to share her favorite song. Finally, the teacher told Heather that her mother would have to help her find the song and then they would sing it.
The next day Heather arrived with the green Church hymnal tucked in her chair, but there was no marker. So they began with the first hymn. The teacher would sing the first part of each song, and Heather would give her answer. After the first 100 hymns, there were 100 no's. After 200 hymns there had been 200 no's. Finally, the teacher began to sing “There is sunshine in my soul today...” (Hymns, 1985, no. 227). Heather's body jumped, and a big smile crossed her face. Her eyes gazed directly into the teacher's, indicating success after three days of searching. Both teacher and student rejoiced.
As the teacher sang the first verse and began the chorus, Heather mustered all her strength and joined in with a few sounds. After finishing the first verse and chorus, the teacher asked if she wanted to hear the rest of the verses, and Heather's eyes opened wide with a firm yes. The teacher began to sing:
There is music in my soul today,
A carol to my King,
And Jesus listening can hear
The songs I cannot sing.
A carol to my King,
And Jesus listening can hear
The songs I cannot sing.
Heather's reaction to these lines was so strong that the teacher stopped. As the reality and significance of the words pressed on the teacher's mind, she wondered if those lines were the reason Heather liked the song? The teacher asked: “Heather, is that what you like about the song? Is that what you want me to know? Does Jesus listen? Does he hear the songs you cannot sing?”
The direct, penetrating gaze was a clear answer. Feeling guided by the Spirit, the teacher asked, “Heather, does Jesus talk to you in your mind and in your heart?”
Again, the child's look was penetrating. The teacher then asked, “Heather, what does he say?”
The teachers heart pounded as she saw the clear look in Heather's eyes as the little girl awaited the questions that would allow her to share her insights.
“Does Jesus say, ‘Heather, I love you’?”
Heather's radiant eyes widened and she smiled. After a pause, the teacher asked next, “Does he say, ‘Heather, you're special’?”
The answer again was yes. Finally, the teacher asked, “Does he say, ‘Heather, be patient; I have great things in store for you’?”
With all her strength, Heather's head became erect and her eyes penetrated the teacher's soul. She knew she was loved, she was special, and she only needed to be patient (Story adapted from Jean Ernstrom, “Jesus, Listening, Can Hear,” Ensign, June 1988, pp. 46--47).
Two years later, Heather died because of the ravages of the disease. Her younger brother, Mark, also suffers from the disease but not to the extent of his older sisters. He can talk, although it is not easy. As the parents discussed Heather's passing and the funeral that would take place, Mark exclaimed, “No go Heather's funeral!” Heather was his best friend. As the parents tried to explain death to him, he would not be consoled. He was crushed and did not want to attend the service. For two days he could not be persuaded.
On the morning of the funeral, the father went to Mark's room to get him up. As he entered the room, Mark was sitting up in bed with a big smile on his face. His first words were: “Dad, go Heather's funeral!”
The father responded: “Mark, what has changed your mind?”
“Dad, had dream.”
“What did you dream about, Mark?”
“Dad, dreamed about Heather.”
“Mark, what was Heather doing?”
“Oh, Dad, Heather running and jumping and singing ‘There is sunshine in my soul today.’ Dad, go Heather's funeral” (Mark's part of the story was obtained through conversations with the parents and also from the book written by the family: Bruce and Joyce Erickson, When Life Doesn't Seem Fair [Salt Lake City: Bookcraft, 1995]; see pp. 65-66).v
Merrill J. Bateman
President of Brigham Young University
Presented on August 4, 1998
at the 20th Annual Workshop on Church Music
at Brigham Young University
