To sign up for Meridian’s Free Newsletter, please CLICK HERE.
Editor’s Note: A version of the following originally ran in the April 2001 Ensign. We felt it was an important topic that should be revisited.
Spring of 1983 was full of anticipation for our young family. Not only were we expecting the arrival of our fifth child, but a new job opportunity would be taking us to Virginia. As my husband, Mark, and I looked for a new home, we prayed to be guided to live near a family that was looking for the gospel. Little did we know about the challenges that lay ahead—as well as the opportunities to learn and grow from those challenges.
Because my previous baby had been so big, our doctor was concerned that I would have difficulty delivering another large child. Consequently, during the latter part of the pregnancy I had a sonogram every month, and with each test I was assured that our baby boy was developing normally.
On August 16th, when I delivered Zachary, he squealed heartily. My joy on hearing his cry soon turned to confusion, however, when the doctor informed me that my new son had a disability called dwarfism.
The nurses whisked Zachary away to the intensive care unit, where he was to be given oxygen until his lungs began to compensate for his undersized chest. As I lay in the recovery room and tried to come to terms with this new reality, I wondered if Heavenly Father was going to take Zachary home. Perhaps it would be easier to part now, rather than after we became too attached. Yet as I held him in my arms, I knew I was already attached to him.
The next day Mark and I gathered our children around us in the hospital room and explained their new brother’s disability. Eight-year-old Rebecca Jo exclaimed, “It’s just a test, a test for him and for us. We’ll just cut his pants shorter.”
Life can be wonderfully simple for children. For Mark and me, our son’s condition was harder to accept. We loved him deeply, yet we went through a period of mourning as we replaced our expectations of a healthy baby with the reality of a child with severe disabilities. Then we remembered friends of ours who, although they had physical disabilities, faced their lives with faith and humor. As we reflected on their lives, Mark and I came to realize that Zachary could likewise be a positive example for others. We prayed often that we would be the kind of parents Heavenly Father wanted us to be—parents who could help Zachary realize his potential.
When Zachary was 10 days old, he was released from the hospital. That same day we boarded an airplane for our new home in Chantilly, Virginia. In only a few days we learned of a local couple, Ken and Patsy Swinson, who had a four-year-old boy with the same rare form of dwarfism our son had. They were eager to share their insights with us, and we wondered if this was the family we had prayed to be led to.
We discovered that having a child with disabilities made us reach deep inside to discover what is really important. We soon found the joy our small son brought, and we began to look forward to growing with him in the coming years. His quick smile and large, expressive eyes captivated our hearts. His older siblings adored him, particularly two-year-old Alex, who showered him with brotherly affection.
Zachary had many of the problems incident to his particular form of dwarfism, including a small cleft palate, poor vision, and a twisted foot. He was not gaining weight, which was a concern, but still the doctors deemed him a relatively healthy baby.
Something Was Wrong
In January, while at the doctor’s office, I noticed that five-month-old Zachary’s muscle tone was changing. The doctor said, “Well, we’ll check it next month,” but I had an uneasy feeling that something was wrong. Later, as I was feeding Zachary, I said a silent prayer, asking what Heavenly Father had in mind for him.
Then came an understanding to me in the deepest part of my soul that Zachary would not be on earth much longer. Although I did not tell Mark about this experience, he later told me he had a similar impression.
Several days later, Zachary’s cry awoke me early in the morning. I got up and changed his diaper and fed him a bottle. As I looked at our sweet son nestled in my arms, my heart welled with love. “Oh, you’re so precious, I want to hold you a little longer,” I whispered as I shared a few more minutes with him. Then I tucked him into his bassinet and went back to bed.
After two or three hours, Mark and I woke up. It had snowed recently, and the children were home because the schools were closed. Mark went to the bassinet at the foot of the bed and started blowing on Zachary’s face.
I stretched lazily. “Mark, don’t wake him up; I want to get ready for the day first.”
Mark looked at me. “I think he’s dead.”
I scrambled to the end of the bed. When I saw Zachary’s face, I immediately knew he was gone. Almost like a reflex action, I cried out in prayer, “Oh please, please; don’t make me go through this, Father! I can’t do it!”
In an instant I will never forget, a feeling of peace swept through my very core. It was as if Heavenly Father was right there with His arms around me. Mark felt it too, and we wept. As we looked at the sweet expression on Zachary’s face, we each felt a witness that Heavenly Father had called this son home.
This was a moment in my life when much was at stake. I then realized we could bear this unthinkable loss—if we wanted to. I knew I could be heartbroken, but if I allowed myself to become bitter, it could destroy my testimony, my marriage, and all I held dear. Perhaps the decision was not even a totally conscious one, but it was made.
As soon as we turned our hearts to heaven, strength poured out upon us more than I could have imagined. With that strength came an overwhelming feeling of gratitude—gratitude that in spite of my initial thoughts in the hospital recovery room we had been given time to hold and love our little boy, gratitude for the gospel of Jesus Christ that gave us knowledge that Zachary’s spirit was not dead and that one day we would be reunited with him.
Once again, as we had done five months before, we gathered our children around us to share in the powerful and sweet spirit that filled the room. We talked of tests and of gospel truths. We spent several hours in the room that morning—it was a spiritual feast for us—and we sensed the presence of Zachary’s spirit nearby.
During that time our thoughts turned to the next few days and to the arrangements that needed to be made. At first we thought we would have only a small graveside service instead of a funeral—after all, we were new to the area and did not know many people. We thought that the spirit we felt was all we needed.
Then we remembered that we had prayed for opportunities to share our testimonies with others. There might not be a time when others would listen to our words as they would now. We remembered the Swinson family and our prayers to find a way to share the good news of the gospel with them. We thought of Zachary and what he would want us to do. What better use of his time on earth than to allow him to be an instrument in bringing the gospel to others?
We decided to have a funeral with speakers who would explain the beauties of the restored gospel and songs that would invite the witness of the Spirit. Mark and I would bear our testimonies, and our three daughters, ages 10, 8, and 6, would sing “I Am a Child of God.”
Sharing the Gospel Message
The day of the funeral, the chapel was filled with new friends from church as well as Mark’s co-workers and our kind neighbors. We hardly knew many of those who came to support us that day, but we felt the gospel message that was heard was of great value to all. Words cannot express the joy I felt at the funeral service and throughout that sacred day as we were given the opportunity to bear our witness of a divine plan.
After that event, life settled back to normal—at least, as normal as life can be after a child dies. Yet we felt continually nourished and sustained. My two-year-old, Alex, filled my aching arms with hugs. It seemed that when my heart felt the heaviest, one of my neighbors would stop by or call to offer support, curious to know how we could face death with such peace. My previously shy tongue was loosened, and I shared my testimony. At the request of friends, family, and neighbors who were not able to attend, we shared tape recordings of the service, and it amazed us to see the far-reaching effects as these copies were then passed on to others who did not know us.
Several weeks after the funeral, Ken and Patsy Swinson called. “Could we come and talk to you?” they asked. “We felt something at the funeral, and we want to feel it again. Would you mind telling us about your religion?”
The next week we were called as stake missionaries and were told to teach our friends. I will always remember bearing witness of gospel principles and being thrilled by the Spirit that flowed so freely at our weekly visits with the Swinsons. The joy we still felt outweighed our grief.
On 6 April 1984, Ken and Patsy entered the waters of baptism. A year later they knelt with their children at the altar of the Washington D.C. Temple to be sealed, and near that time we were blessed with a sweet little girl we named Betsy.
In 1987 we welcomed another son into our family. Sean was beautiful, and everything seemed fine until we learned, on the night of his birth, that he had Down syndrome and something was wrong with his heart.
Mark brought the children into my room the following day and told them, “We may not have this baby very long because of his heart problem, so we need to love him, appreciate him, and enjoy him.” I was grief stricken. I wanted our little boy, Alex, to have the baby brother he had missed before.
But just as we had accepted Zachary’s condition, within days we accepted Sean’s infirmities. Again we learned afresh what is of true worth in this life: to love and be loved as our Savior taught.
In years past, Mark and I had said a commonly uttered phrase, “It doesn’t matter if we get a boy or a girl, just as long as it is a healthy baby.” Those words now seemed shallow as we realized that some of the Lord’s choicest blessings come imperfectly wrapped.
Although doctors reassured us that an operation would solve Sean’s heart problem, we recognized a deep feeling that had haunted us from the beginning of his life in embryo. We tried to convince ourselves we were just nervous because Zachary had died.
When he was nine months old, Sean had open-heart surgery. The week before the procedure was excruciating. Each time Sean smiled or laughed, I tried to capture the moment in my heart.
I tried to hold him closer and savor each moment. In the process I nearly drove myself crazy with the pain of anticipating his loss.
The night before surgery, Mark and his father gave Sean a priesthood blessing in the hospital. After that, Sean seemed to be a different baby. His responses were quicker, his smile brighter, and he seemed extra happy. We felt we were given the gift of seeing him, for a few brief moments, without his disability.
The following day, we waited anxiously for hours, having been told things were not going well. Finally the surgeon entered the private waiting room, exhausted. One of Sean’s valves was deformed and could not be replaced, he said. Sean’s heart would not start up again. The surgeon would do what he could.
I pleaded with Heavenly Father, Please let us keep Sean. How ironic it was—I had feared having a baby with a mental disability, and now I was begging for the chance to raise him. A lifetime with him would have been a priceless gift. Yet in that short period after the doctor left, I realized I must yield my will to Heavenly Father’s. The moment the surgeon returned, I knew Sean had been released from this earth.
This time, however, I felt we were expected to advance in our capacity. We were not led in the same way we had been with Zachary. No overwhelming power of the Comforter swept through Mark and me as it had that morning in Virginia. This time we felt a quiet calm and knew what to do. The Lord let us take those steps ourselves, but once again we felt our Savior’s love at the funeral. Once again we felt joy as we stood together to testify of our faith in the Lord and of our love for Sean. Once again we discovered the strength that comes from friends and family.
On occasion people have said, “Just think of it as a blessing that those two children don’t have to suffer in this life.” Yet we had been looking forward to life with each one of them and to seeing our other children grow up alongside brothers with disabilities. The love we felt for these two sons was undiminished by their challenges.
I am grateful for the short time I had with each of them and for the lessons they taught me. I have learned that life is precious, no matter what form it comes in. I saw the beauty in Zachary’s and Sean’s lives, as well as the beauty that accompanied their deaths. The resulting opportunities for sharing the gospel have strengthened our own testimonies and made us closer as a family.
It has been more than 29 years since Sean passed away. Each one of our five living children would tell you that we have all come to realize that happiness is not just the result of things going right; in spite of the burdens we carry, it is up to us to choose to be happy. We learned that we progress in overcoming the challenges inherent in our earthly experience. We learned that our family progressed much more quickly after we decided that we were going to grow from life’s difficulties. And we have also learned that Heavenly Father helps us in ways we cannot imagine.
Richard MangumFebruary 22, 2016
Your strength is amazing, and touching, yet I wonder how I would have reacted to such a personal test. Seeing your example gives me comfort in the knowledge of our Savior's love for all of us.
DeniseFebruary 22, 2016
Thank you for sharing your special story with us. I, too, had a daughter who passed on from a rare genetic syndrome. She had a profound impact on my life and I am forever grateful to have known her and look forward to our 'next' meeting.