Not My Will

By Wendy Johnston

Having two children with severe disabilities, I felt overwhelmed. Could I handle the challenges?

Steve and I were young, in love, and expecting our first child. We had been sealed in the Washington D.C. Temple the previous summer and were excited about the upcoming birth of our first baby. I had had an uneventful pregnancy, so we were surprised when I went into labor four weeks early.

Our daughter, Amie, was born only a few hours after we arrived at the hospital. Though she was small at five pounds, five ounces, she looked healthy and alert. We took her home a few days later, full of hopes and dreams, marveling at the miracle and beauty of this little baby.

All seemed well at first, but I soon began noticing things that worried me. Amie tried to pick her head up, but it seemed to be a tremendous effort for her, and as soon as she raised it up a few inches it would flop back down. I expressed my worries to the pediatrician and he reassured me, saying that she was premature and would soon catch up. I sensed something wasn’t right, though, and began having a persistent anxious feeling in the pit of my stomach. Later, Amie started making some odd, repetitive movements. We took her to a pediatrician, and she was immediately admitted to the hospital. After she had completed a week of extensive testing, Steve and I were told that Amie had a rare seizure disorder and there was a high probability she would never walk, talk, or be able to care for herself.

We grieved for the lost dreams, for each milestone that our baby wouldn’t reach. We worried about the future and how we would manage feeding, lifting, and caring for Amie as she grew older and bigger. In my distress, the Spirit of the Lord spoke clearly to my mind, telling me to take one day at a time and not worry about the future because everything would work out all right. My heart was troubled no longer, and I felt peace.

We were soon blessed with another beautiful daughter, Ashley. We were amazed to see her pick her head up and look around and marveled at how effortlessly she acquired new skills. Each developmental milestone seemed like a small miracle. Before long, Ashley was rolling over, sitting, crawling, and then walking—all skills her older sister had not been able to acquire.

Another Challenge

Several years later our son, Christopher, was born. He had blond hair and big blue eyes. We were excited to have a boy and delighted to watch him make “vroom, vroom” noises as he played with cars. He loved all the things little boys love: sticks, stones, and anything with wheels.

But when Christopher was four, we noticed he had some language comprehension difficulties. Testing showed a possible learning disorder, and we enrolled him in an early intervention preschool. He thrived in this environment, and everything seemed fine.

But at age five, when Christopher began kindergarten, we saw an accelerating avalanche of frightening symptoms. He began to be fearful and apprehensive. He seemed less responsive to his environment, frequently staring into space and not hearing me when I spoke to him. He nearly stopped speaking altogether. Our previously happy, social little boy was now frequently playing alone, lost in his own world. Again I felt that sick, anxious feeling I’d had when Amie was a baby.

I worked as hard as I could, consulting with physicians, researching medical journals, and working with several therapists and teachers. But at night, when all was quiet, the reality of what was happening to our small boy sank in, and I would cry until I fell asleep. I grieved for our child, who seemed to be slowly dying inside, and I could not be comforted.

Praying for Healing

I pleaded with my Heavenly Father to heal our little boy. I thought that if I had enough faith the Lord would heal Christopher. So I decided to learn all I could about faith. As I studied the scriptures in a new and intense way, I learned that faith was confidence and trust in the Lord and a principle of action. One day as I read in the Bible Dictionary about prayer, I came to these words: “Prayer is the act by which the will of the Father and the will of the child are brought into correspondence with each other. The object of prayer is not to change the will of God, but to secure for ourselves and for others blessings that God is already willing to grant, but that are made conditional on our asking for them” (pp. 752–53; emphasis added).

I realized I had been going about my prayers all wrong; I had been trying to force my will upon the Lord. I now understood that if I truly had faith, I would be willing to accept the Lord’s will for Christopher. After a great deal of pondering and soul searching, I knelt and prayed to the Lord. I expressed my desires that Christopher be healed. I told the Lord that, despite what I wanted so desperately, I would accept His will. After months of crying, grieving, pleading, and praying, I finally felt completely peaceful. I realized then that Christopher was not the only one who needed to be healed. With a contrite spirit and complete trust, I offered my broken heart to the Lord, and He took it and made it whole.

Christopher was later diagnosed with an extremely rare seizure disorder, one that is less severe than Amie’s but difficult to diagnose and very misunderstood. Treatment began, and some of his skills slowly began to return.

We have had many ups and downs in the 12 years since Christopher’s diagnosis. He regained many skills, but not all. He began having severe behavioral outbursts that at one point required extended hospitalization. He is an intense challenge on many days but also makes us laugh and see life from a different perspective.

Amie is now 22 and functions at a level between the ages of six months and three years. She does not speak or walk and cannot care for herself.

Although it is sometimes inconvenient and difficult, caring for my disabled children is not as difficult or overwhelming as I had thought as a young mother. The key to peace is to trust in the Lord and learn to accept His will.

Because of these experiences, I have learned great lessons about faith and prayer. I have learned that I can always trust my Heavenly Father. I found that peace and healing come as I have allowed my will to be swallowed up in His. I learned that I needed healing just as much or even more than my children did. I am grateful for the scriptures and lessons learned through study and prayer. Truly, it is faith that heals.

Illustrations by Michael Malm

Photographs courtesy of Wendy Johnston

Ashley (center) has always been helpful and tender with Christopher (left) and Amie (right). Through our experiences, I have learned great lessons about faith and prayer.

Many days can be an intense challenge, but we have learned to laugh and see life from a different perspective. Right: The Johnston family today—Amie, Ashley, Steve, Wendy, and Christopher.