G. E. M.—A Precious Life
by Dianne Mentzel
Doctors said that Gary would not live beyond 18 years of age, but he lived to be 53. Gary’s camp counselors often said there was no physical reason he was still with us. But Gary survived—on love and hope! He was always looking forward to the next thing.
Our Special Child
When my husband and I were expecting our first child, we were so happy and had no reason to expect any problems. Right after Gary Everett Mentzel—we called him our “GEM”—was born, he let out a shrill cry and then was suddenly quiet. At Gary’s six-month checkup, the doctor told us that Gary could not track a flashlight beam, but he assured us, “He’s just slow but will catch up.” But as Gary grew, we noticed his little legs could not support him to stand up in his crib. He also had nystagmus, causing his eyes to move back and forth rapidly.
A neurologist first told us that Gary’s brain had been damaged during delivery and a recovery would not be likely. We later learned that the actual diagnosis was “Pelizaeus-Merzbacher Disease,” a genetic disorder in the leukocytosis dystrophy family. A person with this disease usually experiences weak muscle tone, muscle stiffness, problems with movement and balance, and involuntary jerking. The disease is passed from mother to son. After Gary and I were both tested, it was confirmed that I was the carrier. This was further confirmed when our daughter’s son developed the same symptoms as Gary.
When learning of Gary’s prognosis at the doctor’s office, my sister held Gary while I cried. Emotions overcame me, but it was a relief to know what we were dealing with. We could place him in therapy, but attending school would not be an option for his first eleven years. So, I began working with him myself.
My mother-in-law sent me a poem which helped me realize that Gary was God’s special child whom He had entrusted to us to raise.
“Heaven’s Very Special Child”
by Edna Massimilla
They will not realize right away
The leading role they’re
asked to play;
But with this child sent from above,
Comes stronger faith,
and richer love.
The news that there was no cure for Gary’s condition stunned me. But God got my attention! I knew only He could help. In my teens, I had gone to church occasionally but with marriage and a career, my husband and I felt we needed to keep Sundays for ourselves. Now, however, we needed church! We began attending, and through Bible Study Fellowship, I learned the Easter story—and opened my heart to receive Jesus as my Lord and Savior!
Twenty months after Gary was born, God added to our family another baby boy, followed by two girls. During the years our children were young, life was challenging as Gary required almost total care. But God was faithful. We took Gary to therapy three times a week and to a school clinic every three months to assess his progress and readiness to be placed in a school. I hoped and prayed each time that he would be accepted. When the clinic doctor saw that the school staff had no intention of admitting Gary despite his recommendation, he advised us to put Gary in a state hospital so that we could make a life for our other three children. But I declined, believing that God had given us Gary for a reason, and we were not giving him away without finding out that reason.
A Path Opens
Little did we know what God had in store. A program for multiple-handicapped children was soon to begin in Oakland, and Gary was to be one of the original twelve students in the program. Each day, I drove Gary and three others to the Cerebral Palsy Center in Oakland. This program was on a one-year pilot basis and needed to be approved by voters to become permanent. To raise public interest on the issue, we printed articles in the newspaper with Gary’s picture and the caption: “A wonderful new world opens up for Gary,” telling the value of the program and why it should continue.
A number of parents went to Sacramento to petition for this program. I went with a new friend, Joyce, who also had a son in the same program. We met with one committee after another, and the toughest one was the finance committee led by George Miller. It was a hot day in May, and we had been there for four hours when Mr. Miller stepped to the microphone and suggested adjourning and resuming the following day. Joyce took my hand and we prayed. Within seconds, Mr. Miller stepped back to the microphone and said he had just heard there were parents of handicapped children present. Then he added that if the rest of the committee didn’t mind giving up their lunch hour, he would stay and hear the parents’ bill. The bill passed effortlessly! As a new believer, I was in awe that God was in charge of the government of Sacramento! Today, there are multiple development centers all over California, as well as a regional center, where parents can go to find help.
All of Gary’s life he had a deep faith in God. One of his first bus drivers was a Christian and listened to KFAX, a Christian radio station, during the commute to school. One night as I was putting Gary to bed, I noticed that he was attempting to turn the knob on his radio to KFAX, despite having great difficulty coordinating his motor movements. At that time, I felt led to talk with Gary about God’s love and purpose for his life. We prayed together and he opened his heart to receive Christ. Later, when his brother Brad was visiting, Gary asked, “Brad, do you love God?” Surprised by the question, Brad responded, “Do you, Gary?” “Oh, yes, with all of my heart!” was his sweet reply.
God directed our paths and provided for Gary’s needs in so many ways. Summer after summer, Gary was able to attend the Easter Seal camp for children like himself, as well as the Christian Berets Camp. At these camps, Gary got to enjoy regular camp activities with other kids, as well as daily Bible study. The camp weeks in the summers provided a wonderful opportunity and time for my husband and me to get away for a vacation with our other children. We also took Gary to a program at a group home where he participated in weekly Bible studies. His wonderful teacher created many unique experiences for the kids with disabilities. When Gary was 21 and needed to leave the program, his teacher had a special graduation ceremony just for him, including a cap and gown.
Life On His Own
Once after speaking at a Christian Women’s Club, I was approached by a young woman who confessed that after her parents died, she was left to care for her handicapped sister, and she resented it. This got me to thinking about what would happen to Gary after my husband and I died. Should we leave our other children the responsibility of caring for Gary?
Remembering the scripture, “Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God” (Philippians 4:6, NKJV), my husband and I prayed. The first answer to our prayer came through Gary himself. One day he asked, “When am I moving out like my brother and sisters?” The next answer came when Gary’s social worker found a beautiful home in San Pablo, which we all agreed was the perfect place for Gary. So, at age 35, Gary began his new life apart from us. It meant he would have a new day program which was far more suited to his interests and capabilities, and he was with friends he had known in earlier years. For the following 18 years of Gary’s life, my husband and I were able to oversee his care from afar and bring him home for frequent visits. God had answered our prayer above anything we had asked.
During Gary’s later years he had back pain most of the time and could not walk or sit on his own, but he never complained. A pain pump was eventually inserted in his back that was refilled periodically, which helped relieve some discomfort. Gary loved people and had a great sense of humor. His smiles attracted many people. God provided Gary a wonderful caregiver, a young man named Issil, who was very much like his beloved brother, Brad. They did many special things together—played pool, ate lunch with neighbors, and watched Gary’s favorite movie, “Hello Dolly.”
One night, we were awakened at 2 a.m. by a call from Issil telling us that Gary had been taken to the hospital. When we got there, Gary was unresponsive. But knowing that the subconscious can still hear, I reassured him that we were there and, more importantly, so was Jesus.
Gary went into cardiac arrest, and the doctor cautioned us that he had been without oxygen for some time. We gave permission to remove the tubes if needed, but they never did remove them. So, we prayed and waited.
While I sat and read my Bible, I was amazed at the verse I was reading: 1 Thessalonians 4:13, paraphrased: “Why do you grieve as those who have no hope? Don’t you know those who die in Christ will rise with Him?” I could see God’s promise being fulfilled right then. While we were gone momentarily to get a bite to eat, with Issil holding his hands, Gary gave him a squeeze, and just like that, he was gone from this world to be with Jesus.
At his memorial service, many people spoke of how Gary had touched their lives. God’s reason for extending Gary’s years on earth became evident. Our other children’s lives were endlessly touched by Gary. Janine went into working with handicapped children because she wanted other children to experience their lives as fully as Gary did. Shari said she felt that anyone who did not have someone like Gary in their home was missing out. And Brad, who loved Gary so dearly, often comments that Gary’s love for God causes him to assess his own relationship with God. Issil, Gary’s caregiver, says that because of Gary, his life changed. God had given a gift to Gary and Issil by allowing them to spend the last moments together before God took Gary to be with Him.
The end of the poem, “Heaven’s Special Child,” goes on to say:
And soon they’ll know
the privilege given
In caring for this gift from Heaven.
Their precious charge,
so meek and mild,
Is Heaven’s very special child.