“A Valued Life,” Ensign, June 2005, 8–11
A Valued Life
Facing the challenges of our daughter’s birth defects has taught us important lessons about faith, hope, and the love God has for His children.
On a crisp January afternoon in 1979, our daughter Camilla was born. The doctor did not pronounce the expected, “It’s a girl!” Instead, he urgently ordered for a specialist to be called, saying, “We have a problem here!” While the medical staff worked with Cami, I watched the second hand sweep around the clock and wished desperately that I could make time stop. Cami was taken quickly from the delivery room. My husband, after checking on me, went to check on our baby.
Later, the pediatrician brought my daughter to me. After placing her in my arms, he sat on the bed and, with tender compassion, explained some physical signs that indicated all might not be well. He suspected several birth defects—future tests would tell for sure. He expressed the hope that he was wrong, but in that moment I knew he was not.
At five months, Cami developed pneumonia. A heart catheterization showed she had a rare heart defect that the doctors felt would eventually take her life. We were given no hope and were told there was little time to enjoy her. We also learned she might have other problems such as blindness, deafness, and kidneys with congenital abnormalities.
Parents who have gone through similar experiences will understand the desperation we felt as we sought advice from many doctors. One after another reported negatively to us. However, we found that the promise of eternal life is a sanity saver for sorrowing parents. We began to truly comprehend that the gospel of Jesus Christ is a gospel of hope, faith, and priesthood power in which all human life is valued.
Surgery, Tests, and Spiritual Lessons
When Cami was one year old, she weighed less than 15 pounds. We learned then that she was not hearing normally and would need surgery. Her cardiologist said it was wondrous that she had lived that long and refused to give her anesthesia for ear surgery, fearing it would be too much for her heart and lungs to handle. So during the operation, Cami’s body was strapped to a papoose board, and I held her head.
The surgery improved her ear infections but not her hearing. Later, more sophisticated tests showed that Cami was, in fact, profoundly deaf. We realized that the cost of hearing aids was the exact amount we had put aside to pay our tithing. Our bishop counseled us to pay our tithing and said that, if needed, the Church would help.
We paid our tithing, and Cami was given a blessing. Then we took our daughter to Primary Children’s Medical Center in Salt Lake City for final tests before getting her fitted with hearing aids. The technician was so astounded at the results of the test—“hearing within normal speaking voice range”—that she thought the machine must have malfunctioned. We knew better.
My faith much reinforced, I wanted a complete cure. The Lord had given Cami her hearing, and I knew He had the power to make her whole. I pleaded with my husband, and he agreed to give her a blessing. His voice breaking and hands trembling, he gave her a treasured blessing filled with great promises. But he didn’t bless her that she would be cured. At the blessing’s close, my husband turned to me with tears streaming down his face and simply said, “The Spirit restrained me.”
Then came my first real acceptance of Cami’s physical limitations. Sometimes it takes more faith to accept the Lord’s will than it does to invoke a miraculous healing.
A month or two later we had tests run on Cami’s kidneys. The tests confirmed that they, too, had defects. The urologist informed me that she needed surgery within two weeks. Since the cardiologist said her heart couldn’t withstand the surgery, the urologist could give us no hope that she would live. But following more fasting and prayers and another blessing, Cami’s condition improved without surgery. Yet even though she continued to grow and develop, the doctors did not believe that she would live long.
“Your Life Will Not Be Shortened”
When Cami was four, doctors began talking to us about an experimental heart surgery. After much prayer, we received confirmation that our daughter would survive the surgery. Over the last few years we had learned to depend so much on spiritual guidance that we trusted those promptings. We gave our permission for the surgery, hoping that some good might come out of it. Perhaps the doctors would learn something that could help others. Perhaps they could help her. Whatever happened, we knew Cami would be okay.
The surgery was not successful. The surgeon, who seemed particularly upset, told me that when they had come to the experimental portion of the surgery, he had received a distinct impression that he should not attempt to do it. When he told the cardiologist, the cardiologist accused him of succumbing to fear, saying, “You’ve gone this far—you’ve got to try. If you don’t, you are condemning her to no hope.” So a second time the surgeon prepared to do the graft, but, as he explained, “The impression was even more distinct. This time I felt sure if I continued there would be a fatal blood clot to the lung.” He then looked at me intently and said, “It was my decision as her surgeon to discontinue the operation.” As I listened to his story, I recalled the words of Cami’s pre-surgery blessing: “I bless you that your doctors will be inspired so that your life will not be shortened before its appointed time.” I was grateful for a surgeon who listened to the promptings of the Spirit.
Cami recovered rapidly, and the doctors were amazed. Soon she was up and smiling at other children in the hospital.
In the Lord’s Hands
After the experiences of Cami’s heart surgery, we had no doubt that her life was in the Lord’s hands. We decided to simply treat her as normally as possible and enjoy her precious spirit for as long as she lived. She attended regular public school and enjoyed some of it. When we moved from Utah to Waco, Texas, people treated her wonderfully. As we watched our daughter grow, we felt blessed and content. However, when Cami was 15, her heart began to fail. She turned blue and had to go on oxygen. We thought perhaps it was her time, but still we hoped.
We were sent to heart specialists at a children’s hospital in Austin. Heart research had progressed greatly in the past 11 years. A new use for a waterproof fabric had been applied, and a team of specialists used it to repair and restructure Cami’s heart the day after her 16th birthday. While she was in intensive care recovering from that surgery, day after day her father and I would sit by her bed and read to her from Louisa May Alcott’s Little Women. One day several months after her amazing recovery, the blueness gone, her health quite restored, Cami pointed out the following quotation from that story, saying, “Mom, this is me”:
“There are many Beths in the world, shy and quiet, sitting in corners till needed, and living for others so cheerfully, that no one sees the sacrifices till the little cricket on the hearth stops chirping, and the sweet, sunshiny presence vanishes, leaving silence and shadow behind” ([1932], 38).
I realized that in her own way, Cami is our Beth; in her quiet, cheerful way she has taught our family much about sacrifice and love.
Surpassing Expectations
We have since moved to West Virginia, where Cami graduated from high school. Today she is 26 years old. Although her poor vision limits her from driving a car and doing many other things, Cami lives a very full, quiet life. She goes visiting teaching regularly, has given talks in church in spite of her slowness of speech, does much of the cooking and homemaking for our family, and even writes stories. She serves as our family’s memory, reminding us of important appointments and dates. And she is constantly on the lookout for special toys for her nephews. Cami is an integral part of our lives.
I often wonder what would have happened if we had given up hope, if we hadn’t trusted in priesthood blessings, if we hadn’t accepted the Lord’s will regarding our daughter. I am grateful for the blessings and the perspective that the gospel has given us. Our experiences with Cami have shown us the power of faith, of hope, and of the priesthood and have taught us the value of every human life. I know that Cami will live to fulfill her mission on this earth—however long that may be.
Illustrated by Dilleen Marsh