by Glenda Hart
“One day at a time.” I’ve always heard people say this is how we should live. It doesn’t sound too hard – until you’re forced to do it.
I was raised in a Christian church. Having been baptized in my early teens and committing myself to God, I would have no problems – or so I thought.
After my husband Bill and I were blessed with our first child, Melissa, and then a son, William Jr., almost four years later, our family was complete. But at the time of Billy’s birth, I had no idea what was in store for me.
As we grow, we see ourselves having children who will outlive us. However, it doesn’t always work out this way. I lost my son through death when he was thirteen. Oh, what a burden!
Life and Death
In 1983, Bill’s mom was terminally ill with cancer, so I talked with Melissa and Billy about dying. “You can’t have life on this earth without death,” I said. “They go hand-in-hand.”
One of the kids mentioned that only old people die. I said, “That’s not true. No matter what age we are, we can die. But we have a promise to live forever in God’s kingdom, if we choose to follow Him. The age at which we die isn’t important; it’s how we live our lives daily that counts.”
I always spoke openly about death to my children, because I felt they needed to know about it. Actually, I think God was preparing me for what was to come.
Bad News
During Billy’s kindergarten physical in June 1983, the doctor noticed something wrong and asked for a blood test. The diagnosis was Muscular Dystrophy, Duchennes. At the time, I said to the doctor, “So, we’ll treat him and he’ll be fine.”
But that was impossible; there is no known cure for Duchennes.
I started reading everything I could regarding this disease. I prayed and cried. But in the end, reality slapped me in the face and I started to absorb all the facts: My child had a life expectancy of only twenty-one.
I prayed, “That can’t be, God. You can cure him. Make a miracle happen! Please, dear God, help me. Isn’t my faith strong enough? If we have the faith of a mustard seed, can we not move mountains? Oh, please give me strength to deal with this. You care and love us so much. Don’t let this happen!”
Many times, I asked God, “Why?” Then I remembered that this world is not perfect. There is evil, and death is a part of it. I also remembered that death isn’t the final blow; God has given us eternal life.
I had to stop feeling sorry for myself. I wasn’t the one with the disease; Billy was. He needed my support, love, and care. I found myself thinking of things to come: doctor appointments; tests; braces; wheelchairs; sacrificing my time; the lack of sufficient time for Melissa, Bill, or myself; and ultimately, Billy’s death. At times, the burden was so overwhelming, I found myself unable to deal with it.
Questions and Answers
Bill and I decided to let Billy be the one to ask the questions. When he asked why he had to do his exercises, I answered, “The muscles in your legs are weak. We need to stretch your heel cords so you’ll be able to walk.”
We had a muscle test done to see how much muscle loss had occurred. The test revealed that Billy had only one-fourth muscle strength left. We also had a muscle biopsy done to be certain it was Duchennes. I had hoped the doctors would find a wrong diagnosis, but that was not to be.
Struggle with Reality
Eventually, the exercises became less effective, and Billy’s walking became more labored. To see this literally tore me apart. What kept me going was Billy’s determination not to let this get him down and his ability to face the challenge with a happy heart.
Every time I got discouraged at what Billy was going through, he said, “That’s okay. I’m fine.” When he needed encouragement, he said to me, “Mommy, I need a hug.” This also happened when he felt me becoming frustrated or distressed. What a positive attitude he had!
Support from Others
As Billy required more and more care, I found myself becoming emotionally drained. Though God was always there, I still struggled.
Our family finally got involved in a support group of other families with children who had Muscular Dystrophy. Billy was one of three older boys in the group. The younger boys had been recently diagnosed, so their parents had a lot of questions and fears. They looked to the other parents for help, because our sons were in more advanced stages of the disease. It gave me strength to share my experiences of how God had helped us.
Our support group became close and helped me with my emotional needs. Billy gained the support he needed from other kids at M.D.A. camps during the summer. After I picked him up from camp the first summer, I could immediately tell he had not been adversely affected by other kids in even worse condition than he.
When You Die . . .
I always tried to think of what Billy was thinking and how he was dealing with what was ahead for him. Once when Billy, Melissa, and I were driving in the van, he asked, “What will happen to my wheelchair when I die? Will they bury it with me?”
I was glad he could not see my face. My eyes filled with tears.
“No, Billy,” I answered. “Remember, when you die, you won’t need your wheelchair.” Each time he asked questions, God gave me strength to answer.
Increased Burden
In 1991, I was feeling at peace with things. We still had at least nine more years with Billy; he would finish high school and maybe go on to college. I had hope a cure would be found, yet all the while, I wondered about the quality of Billy’s life. It looked like he would face the use of oxygen, foot surgery, perhaps even a rod in his back. I feared that maybe I couldn’t handle this.
“Please, God,” I prayed, “let me know what I should do. You know what’s ahead. Help bear my burden.”
By the spring, Billy had an electric wheelchair, which gave him more independence. However, I found he needed more caretaking from me.
I prayed again, “Please, God, let me know what I should do. You know what is ahead. Help bear my burden.”
One summer afternoon, we were relaxing in the backyard. Suddenly, Billy paled and was unable to speak anything that made sense. Later at the Kaiser center, he was treated for heat stroke and sent home.
But the next day, x-rays revealed that Billy had an enlarged heart. An MRI told us he had perhaps a year to live.
Though I was crushed by the news, I knew God was there. I found the strength to tell Billy what the doctor had said and what needed to be done. Billy was to go into the hospital for a one-week stay.
Letting Go
At the end of summer, Make-A-Wish Foundation contacted us and said that Billy was to be granted a wish. He decided on a trip to Epcot Center in Florida. A date was set for February 1992, but Billy’s doctor advised us to go sooner.
In September, we were off to Florida for six days, all expenses paid. The Lord knew Billy’s time was short with us and that things would become more difficult. I felt like I was already in mourning and was letting go of Billy.
Billy and I read the Bible together and shared what it said. Billy didn’t want me to cry; to him, there was nothing to cry about, but I got tears in my eyes anyway. Billy believed in eternal life with Jesus. Years before, he had accepted Christ as his Savior. On February 1, 1992, Billy declared his faith in front of his family and church friends.
The afternoon of February 17, 1992, Billy passed away. I was home at the time, but didn’t see him take his last breath. God knew all my prayers and concerns and helped me through the loss of my son. Billy’s journey was over! The grieving I had to go through, however, was not.
I had such an emptiness to deal with before I could learn how to live my life again. I hurt so bad and needed time to heal. Who knew how long that would take.
God’s Presence
As I look back, I can see that in everything God had been there; He knew all of my fears and struggles. He knew what I needed and when to give it. All I had to do was trust Him and have faith to get through my journey.
I will always have tears for Billy. I will never forget him. I know I wasn’t alone in Billy’s suffering and that I’m not alone now. I keep in mind that what counts is eternal life with Jesus.
In the meantime, I go forward with life – one day at a time.
A version of this article appeared in the December ’95 issue of the Bible Advocate magazine.
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