The Lord provided strength and courage on our journey with ALS.
“You have ALS and, most likely, two to five years to live.” My husband’s diagnosis was final.
Our journey had begun when Leon noticed weakness in his left hand and then had trouble with buttons. The doctors were certain. Amyotrophic lateral sclerosis or Lou Gehrig’s Disease is a degenerative disease that affects the central nervous system. Leon would gradually lose control of his muscles, ending with total paralysis.
Our worst fears became a reality. When the doctor stepped out of the room, we embraced in tears. We returned home to make some difficult but necessary decisions. Our prayer became, “Help us, Lord! If you can use us through this disease to reach out to others, we are your instruments.”
Leon took the lead in determining that he could no longer farm—something that he’d done with his dad and brother all his life. The brothers had become partners when their dad died. He had always farmed, except when he served as a loadmaster in the Air Force for four years. The changes Leon’s diagnosis brought were not easy on his brother. Their mother was still living at 94 and supported what needed to be done for everyone’s sake. (She is still living, doing well at 99.)
We also realized that we could no longer stay in our split-level farmhouse without costly major adaptations. ALS would eventually rob Leon of all muscle function but would leave him with his sight, hearing, and mind. He would be able to think but gradually lose his ability to walk, talk, eat, and use his hands. We decided we needed to move to a patio home in town where he could navigate on his own for as long as possible.
God led us through unusual circumstances to a home that was perfect for us. We set a moving date and began to sort through 40 years of stuff. Then we moved off our farm into town. We continued to pray for strength and peace from our Lord and knew that he would be with us wherever the next phase of the disease would take us.
Living in peace
As we settled into our new home, we hung the Christ-centered pictures and plaques that we’d brought from our farmhouse and stacked our devotional books in different rooms. I put meaningful Bible verses on the refrigerator and in my kitchen work area. I worked at a Christian bookstore for 17 years and purchased so many pictures, Bibles, books, and Christian CDs that Leon always laughed and said that I spent more than I made. I’m certain that he was right!
We hung one of my favorite pictures over the fireplace, which is the center focus of the townhome. It is a picture of Jesus and the frightened disciples in the storm on the sea. Jesus is standing and rebuking the wind and the sea. The words on the frame are from Mark 4:39: “And he arose, and rebuked the wind, and said unto the sea, PEACE, BE STILL. And the wind ceased, and there was a great calm.” “Peace, be still” is all in caps. After the diagnosis and initial shock, I don’t remember a time when we didn’t have peace—the peace that only God can give.
My dear Leon never lost his smile until near the end of our journey when his facial muscles would not allow it. When asked by aides and nurses how he could be so positive and cheerful while living with such an awful disease, he would simply reply, when he could still talk, “I know where I am going.” His faith never wavered, and even though I had times of great sadness and tears, I knew that the Lord was with us.
From the diagnosis to my Leon’s entrance into heaven was about three and a half years. I cared for him at our home with the help of dedicated aides, nurses, and doctors. We had cherished times together, including numerous trips to a park and falls area near our home and many visits by our family and friends. He had a motorized wheelchair that he was able to navigate by himself until the last few months when he trusted me to run it. That was a total leap of faith on his part!
Even after he could no longer communicate verbally, we used a spelling chart that I held, and he would spell words by looking at one letter at a time. Before losing the use of his hands, he was able to run the computer using Bluetooth and the driving handle of his motorized wheelchair. With that he connected with many old and new friends and relatives who sent prayers and support.
We did not walk this journey alone. God had placed in our life the blessing of wonderful caring family and friends, pastors, neighbors, and a local Christian radio station. The outpouring of love was amazing. Our three children and their families were great blessings. One grandson was born after the diagnosis. Leon was able to see this little guy grow and start to walk. Little Kyler was fascinated with Leon’s motorized wheelchair and would crawl over to it, pull himself up, and stand looking at his grandpa.
The love and support continues even now and is such a blessing. Now I panic if I can’t get the radio station. It’s the only station I listen to because it remains an encouragement and comfort.
I tried to send a mass e-mail about every three to four months to give updates on our journey. Toward the end of our journey, we hit a few days when I became exhausted. Our nurses encouraged us to take advantage of respite care—an overnight stay for Leon in a nearby hospital so I could get some rest.
After leaving him there, I drove home in tears. When I arrived home, I was moved to write an update, because I felt particularly vulnerable at the time:
I have learned that God reaches out in love when I dissolve in tears of sadness. He reaches out in forgiveness when I question why he is taking my beloved before I’m ready. He reaches out with peace when I worry about the “What ifs.” He reaches out with strength after I’ve had a hectic day or an exhausting night. He is always by my side . . . even when I forget to talk to him. How can I question his love and faithfulness?! Even on my worst days, I know that God loves me and has a plan. Our lives are in his hands. There is no better place to be!!
My dear husband and friend died at home with his family four months later. I have not changed much in the house since Leon has died. I draw so much comfort from all those special pictures, including photos of him and me at places we visited over the years. I still have the Bible verses by my sink. All I know is that the Lord has blessed me, and I am constantly reminded that I’m in his care.
Lynette Hopp is a member at Trinity, Nicollet, Minnesota.
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Author: Lynette Hopp
Volume 105, Number 9
Issue: September 2018
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