Embracing the future I did not anticipate by releasing the future I had expected .


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I love to write. I love to share what I am learning…what God is teaching me. But, writing about the most devastating things takes me awhile, obviously. Believing that God has a purpose in the pain gives me the ability to put it down in words…even a few years later. God is all about the present…my future in Him is awesome and waiting…He has it planned out already. I want so much to talk about that. But, I cannot without sharing the past that has brought me to this present. So, here it is…the one experience that, by far, has been the most difficult to expose in written word…

“The weather had been unbearably gloomy. There had been a few weeks of inversion in the valley and it had been thick. It was winter in Idaho. Still, it felt unusually heavy, anyway. It was that way – outside and inside. Heavy and thick and cold. We had been waiting. Waiting for almost two weeks, now. It was mid-winter and we had been expecting this for over 19 months. 19 excruciatingly painful and significant months.

February 18th was the first real sunny day in weeks, where we live, so the nighttime sky was crisp and clear. I had gone outside to stand in the cold about 9:30 p.m.. As I whispered to heaven, I was visually struck by a “star” that was extraordinarily bright. Bigger than the rest and glowing with an iridescent ring at its edges. It was directly above my yard, which is surrounded by trees, and right in my line of vision. I had not seen one like that before and I haven’t since, but, that night, it was there and I was sure it was God’s gift to me. It was a message, I thought, to communicate God’s visible presence with me as I stood on my back patio, feeling completely singular now, breathing in the cold. I was comforted and moved by the thought that the God of the universe; author of breathe and life, had given me this type of gift.

Cliff had made the decision to stay at home, not going to a hospital. We, my children and I, had kept watch around the clock with Cliff, caring for him, giving him his meds, doing what we could to help him be as comfortable as possible. We watched and prayed, read the bible to him, we kissed him and loved him as he transitioned from this earth to his real home in heaven for those two weeks before he left. Twice God allowed us to experience Cliff’s awareness and joy over someone there that only he could actually see. With really no ability to lift his head or even really smile he did both as he looked at something or someone unseen to us. After walking with him in his excruciating journey it gave us hope and relief.

At 4:30 that afternoon of February 18, after living 19 1/2 months with Lou Gehrig’s disease, Cliff, my husband of almost 32 years, left this earth for heaven. We had walked a terrible and holy journey together which was now complete. He had been released from the struggle. There was thanksgiving for no more suffering.. We, as a family, prayed together in that room…we were thankful to God for his life and the welcome home party we knew he was experiencing. There was also a vacuum. There was continued weeping and heartbreak. We were now left with a different type of struggle; learning how to go on with life, without Cliff.

~This process of healing and learning to go on has been “quicker” for some of us – including myself – because, I believe, in many ways, God had begun to prepare us two years earlier…even before Cliff’s diagnosis. I know my process of grief began the day we found out.~

Back to the “beginning”….

In March of that year, 2008, we had begun to notice a “twitching” in the muscle of Cliff’s upper right arm. Everyone gets muscle twitches but this “twitching” never stopped. Then, his right hand began to weaken. By the end of June he had experienced things “slipping” out of his grip. This is what prompted the visit to a neurologist on July 3rd, 2008.

The diagnosing neurologist, after initial testing, knew beyond the shadow of a doubt that Cliff had developed, at that time (thanks to the ALS ice bucket challenge people are now more aware of it), a relatively uncommon disease known as Lou Gehrig’s disease or Amyotrophic Lateral Sclerosis (ALS). As he straightforwardly gave the news to Cliff he told him, “If you have people to pray, get them praying”. Cliff was in shock. He said that he knew his life was about to change radically but could not comprehend all the doctor was saying.

Cliff hadn’t thought it was necessary for me to see the doctor with him. He truly believed he just had a pinched nerve or some other relatively minor thing. He was a very healthy and physically active 51 year old guy. Really, in both our minds, nothing truly life threatening could be going on. So, I stayed at the office working while he went to the appointment. He called me immediately after leaving the doctor’s office. He asked me to meet him outside so that he would not have to explain anything to the other staff before sharing the news with me. I knew then that it was something we hadn’t even imagined. I was afraid.

Cliff loved baseball so, obviously, knew who Lou Gehrig was…a 1925 Yankee’s first baseman. They shared the same birthdate – June 19th and Cliff also played first base for a time. But, he knew nothing of the disease that was named after the famous ball player. He was in disbelief as he was told that ALS is always terminal…that the projected life span of an ALS sufferer is approximately 3-5 years or 18 months to 3 years, depending on the study you look at. Later, looking at how the disease is described and what it does to its “victims” left us without words.

The ALS/TDI website describes ALS this way,
“[ALS] is a progressive neurodegenerative disease that attacks motor neurons in the brain (upper motor neurons) and spinal cord (lower motor neurons) and affects muscle function. The motor neurons control the movement of various voluntary muscles including the diaphragm. Associated with the loss of the ability of motor neurons to function in ALS, the various muscles cells waste away (atrophy), resulting in increased muscle weakness. Ultimately, accumulated loss of motor neuron makes it impossible for voluntary control of normal muscle function.” (www.als.net)

Basically, over the course of the duration of the disease, many ALS victims lose the ability to do anything for themselves, the loss of dignity is acute and unless they die of pneumonia or choking, the diaphragm atrophies and the lungs fail. It is a devastating disease. To this date, there is no cure and no real, effective treatment. It is always fatal.

We drove home in tears and shocked silence. Once in the driveway Cliff asked me to call our financial advisor and insurance agent, who happens to be my nephew-in-law, and make sure Cliff’s life insurance was in order. We asked him not to say anything until we had communicated with our kids. We cried on the phone together. Robert was not only involved in our lives because of his job and as family, he was also an elder at our church. He had been a part of our lives in ministry for many years, at that point, and he and Cliff were close.

Inside the house, our oldest son, Justin, was the only one at home. He had come home for the summer after graduating the previous May from a Christian college in Southern California with a degree in biblical exposition. He was headed toward the mission field and had intended to go back to get a teaching certificate in order to, potentially, open more doors in other countries. That was not to be. We called him into the room and asked him to sit down and told him of his dad’s diagnosis. He struggled to wrap his mind around it.

We had a 4th of July church event scheduled that night with some of our kids and most of our leadership attending. We decided that we would still go and Justin rode with us. Telling them sooner than later, we figured, would be better for everyone. On the way there we called our second son, Jordan, who was a wildfire firefighter (now a smokejumper) and was stationed out of a town a couple hours away. That call was heartbreaking for all of us.

My legs were lead when we arrived at the park and got out of the car. I’m pretty transparent and I knew my face would show my emotion. We wanted to wait to tell our church family until we had personally told our youngest son, Jake, and his wife, Cortney, and called our daughter, our “baby”, Chelsea, who was away from home for a long weekend. After a few moments of greeting with people we called Jake and Cort away from everyone else and all sat on the ground while Justin stood “guard” so we could have some semblance of momentary privacy. To explain this devastating diagnosis to this young couple, the parents of our only two grandchildren at that point, was a wrenching experience. Jake was stunned and Cortney began to, immediately, feel the sting of the loss of a Godly, loving grandpa to her little girls.

We then needed to make the awful call to our daughter, Chelsea, who was about 600 miles away. At that time she was 19 and making plans for her future, excited about what God had in store for her. We told her, as gently as we could, about her daddy. She was devastated and confused. She did some of her own research which was only brought on more heartbreak for her. She could not get home fast enough.

We did have, as the doctor asked, people to pray…hundreds of people began to pray that night, July the 3rd, after we shared with our kids and our church family at that Fourth of July BBQ. So many tears, so much heartbreak. To wrap our minds around a fatal diagnosis…it was too much.

It took me about two weeks to really ingest this and for my mind to clear enough to process. I was in shock. In retrospect, it took until the fall of that year for me to fully understand the reality of this disease and accept it. I am naturally a pretty realistic person. I would like the truth, as hard as it may be, upfront, please. Just lay it on the table. It didn’t help that after a second, third and fourth medical expert, professional opinion…we still couldn’t get enough definitive answers for the questions we were asking. We wanted why’s, how’s and when’s. Not possible. There is not enough known about the progression of this disease in relation to each individual patient to be able to give specifics. That was very difficult for me. For both of us. I was forced to relinquish my demand for answers in favor of placing my trust in my God who knew exactly what He was doing.”

The future I thought I might have had a few years ago is far different than the present I am in. What my future holds now may not be what I anticipate, at this moment. Regardless, what happens in the lives of God’s people is never random. God is sovereign. He knows, He plans, He is intentional…about our journey, our growth, our character, our comfort and healing, our usefulness in His hands in the lives of others, our relationship with Him…He is all about our good and His glory. No matter what my/our situation or circumstances. That is truth, eternal truth, and that continues to give me hope. My prayer is that the depth of this truth will resonate with you and will bring you hope and healing, as well.

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1 Comment (+add yours?)

  1. als a loss surviving
    Dec 29, 2014 @ 15:24:26

    Reblogged this on als a loss surviving.

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