Recently I was asked to share with a group of women. The subject was, where is God in suffering? This is our story…
Our story of hope
Peter and I were college sweethearts. We married the summer that we graduated from college. We had 2 kids, Ryan and Chelsea. We loved being parents and raising our kids together. We were involved at church at every life stage. As we entered the empty nesters stage, we were excited for our golden years together. Our son Ryan had just gotten married. Our daughter Chelsea would be graduating from college later that year. Peter was about to launch a new business. We were involved at our church. Peter was an was an elder there. We had been blessed with great friends and extended family. We were really excited about the second half of life, and growing old together, and becoming grand parents one day.
Peter’s speech began to slurr in 2009. It sounded like he had been drinking too much. Peter was an excellent communicator, he loved talking with people. He was the kind of guy that would just love to meet for a cup of coffee and chat. He was strong and healthy and rarely even got a cold.
We began trying to find an answer. After almost a year of tests, scans, medical centers…we had our answer. With 3 words our lives changed forever. You have ALS.
ALS or Lou Gehrigs disease is a motor neuron disease. It is terminal and there is no cure. There are about 30,000 people in the US with ALS. We were told that Peter had 3 to 5 years to live… We were told what would happen to him….His mind and memory would remain sharp and intact.
He would lose the ability to swallow and eat…He would need a feeding tube. He would lose the ability to speak. He would need a computer that he could use his eyes to blink and spell out words. He would lose the ability to use his hands and arms… He would lose the ability to walk or move. He would become completely paralyzed… and he would need constant care giving. Finally he would lose the ability to breathe…and he would die. There was no hope.
We shared the devastating diagnoses with our kids, our family, our friends and the community. There was an outpouring of love, prayers, and tears. No one knew what to do…..we didn’t know what to do. We just knew we couldn’t do this alone. We would need the help of God and of others.
Within days a friend of ours shared this with us. “Peter and Andrea, you have been given a gift. “ We stared at him in disbelief, what do you mean? There is no gift in this. He said, “ You have been given the gift of time.” ….I believe God was speaking through him. Those words brought a ray of hope into our lives at a very dark time.
We held on tight to each other, and to our family and friends. We clung to the foundations of our faith. We knew without a doubt that:
God loved us
God is good
God would be with us
God did not create a world with ALS. It is a result of the fallen world we live in.
God has the power to heal Peter. But even if he doesn’t, we will continue to trust in him.
God has a plan for our lives. Even though we may not understand it this side of heaven.
We believed these truths with all our hearts…so we clung to them and surrendered to God. We asked him to show us the way through our ALS journey.
We sought God’s word for comfort and direction. As we were reading in bible, God gave us the road map for our journey. It was Isaiah 41:10
“ Do not be afraid for I am with you.
Do not be discouraged for I am the Lord your God
I will strengthen you and I will help you.
I will hold you up with my victorious right hand.”
Each line of this verse represented a year in our ALS journey. I didn’t realize how incredibly it lined up until we were near the end of our journey. I had this verse engraved on a large boulder in our backyard for Peter’s birthday.
“Do not be afraid for I am with you.” I would repeat this line over and over again when I became paralyzed with fear…and I was comforted
“Do not be discouraged for I am the Lord your God”… As the physical losses for Peter continued, speech, swallowing, use of hands and arms, breathing difficulties…God lifted us from the pit of despair, saying to us, I have a plan and, I have this. Continue to trust in me. We put our faith in the sovereignty of God’s plan even though we did not understand it. God gave us a covering of peace during a very painful time.
It was at this point that we experienced the miracle of Gods resources and power. There was a Share the Care group formed for us. The verse,” I will strengthen you and I will help you”… was lived out in real life.
Share the Care was a local group of 80 family and friends, and an extended group of about 25 people. These people were angels sent by God. They were the hands and feet of Jesus. Some how they knew exactly what was needed, even before we could voice it. They used their unique gifts and talents for us. It’s impossible in this short time to list all that they did. I kept a book of miracles and blessings, here are some of the entries.
Prayer, emails, cards, worship singing at our home, cheer giving visits, house work, yard work, home repairs, financial Gifts so we could stay in our home and pay our bills, meals 3x a week, holiday decorations and meals delivered to our home, home entries modified for Peter’s power wheel chair, our bedroom and bathroom completely remodeled for handicapped accessibility, an adjustable queen size bed so Peter and I could continue to sleep in bed together, our daughter Chelsea’s wedding and reception for 120 people ,strawberries and cookies left on the front porch, the Bookstore staff that did their job and mine so I could be home with Peter, a Conversion van to transport Peter, super bowl parties for Peter each year, and countless other acts of kindness. We were humbled by the goodness and generosity of these people.
The biggest miracle of all was how Peter lived out this disease. ALS is a difficult disease for anyone, but for Peter it went against his very independent nature. He was a get it done guy, and rarely asked for any help. I remember telling God, This will never work, anything but this. Yet, from the very beginning Peter chose to trust God in all things. Shortly after his diagnoses he created a website,” and called it….Living with ALS but Choosing Joy.”. He had his own ministry of joy that encouraged others. The website opened our lives to others, and allowed them join in.Our house was like a revolving door of people that graciously helped us. Peter had an infectious smile,…it radiated joy. Somehow, even though all his other facial muscles atrophied, the ones that controlled his smile stayed until the end. It was another gift from God.
The last verse of the scripture “I will hold you up with my victorious right hand.” This is the most comforting part of the verse. God is always victorious!…. ALS did not win…..death did not win. My precious Peter left this earth on Dec 28th 2012… He is now completely healed…. and in heaven with Jesus. When the sadness overtakes me… I cling to the assurance that I will see Peter again; he will be talking, walking, and eating. He lives on in heaven and I live on in hope.