My name is Adam Kotter. I am a fifth-generation, true believing Mormon. For me, being a member of the Church is a core part of who I am. My life revolves around my family, and my family is held together by covenants made with God. I used to think that for me to question the Church or its practices was tantamount to treason. I knew nothing I could do would hurt my family more than this. Of course, I never considered this to be an option. Right? Why or how could I doubt something with which I had had so many spiritual experiences? That was a problem for some “less faithful” member, not a rock like me.
Then one day, my 11-year-old son was diagnosed with Leukemia. The trauma of that diagnosis was hard on all of us, but it was tempered by the knowledge that the doctors had a plan. Sure, Leukemia is a big deal, but we were at a top pediatric cancer center with experienced and loving doctors and nurses. It was a treatable form of cancer, and there were long-established protocols. He would be sick for a while, but in the end all would be fine.
I’ve learned humans can deal with just about any crisis if they know there is a plan and a way for it to end. I hunkered down, signed the treatment authorization forms, and started to adjust my life around this new reality. At first it seemed all was going according to plan. Then bad things started to happen.
Have you ever read a list of possible side effects for a drug? It’s that whole list of really nasty stuff that very few people ever experience, but because there is ever so slight a possibility of it happening, the drug companies are required to disclose it. Those rare individuals who experience those side effects are called “outliers.” I quickly learned what this meant as my son started to experience many of those side effects.
At one point he had seizures, and we spent a night in the hospital hoping his brain would “reboot” and that he would not be permanently damaged. Then the chemo shut down his intestinal system, and he couldn’t process any food. Then the chemo alternated between paralyzing his nervous system so he could not move his legs and making the ends of his nerves feel as if they were on fire.
There were days I listened to him scream in agony as the pain broke though the morphine…days I carried him around the house/hospital as my wife and I cared for him as we would an infant…days we alternated between pain management teams, physical therapists, neurologists, pulmonologists, oncologists… and a bunch of other ‘ologists. Every time he seemed to be turning a corner, something else happened. And during all this, I was still trying to run my business, be a good husband, serve in the church, and spend time with my other children.
I kept telling myself that if we could just hang on a little longer we’d be done with the intense part and all would be well. I blogged, prayed, and tried to stay sane. Then the day came when he had his spinal tap to determine the effectiveness of the first round of intense chemotherapy. The initial results looked good, and we all celebrated. It was hard but worth it. David would live, and this would all soon be but a memory.
A few days later we were sitting in the hospital when the oncologist walked into the room. She quietly informed us that there had been a mistake in the test. The reported number of cancer cells in his blood and the actual number of cancer cells in his blood were off by about a factor of 100. The treatment had helped, but it had not produced the desired results. As I sat there shell shocked, she turned to me and said, “It’s okay to cry.” And I did. Then I had to push all that down and start talking about a new plan. Our odds of a cure had just dropped dramatically, and it was time to regroup and try again.
David would need more of the same treatments...more of the same stuff that caused all the issues…more of the stuff that caused him to scream out in pain as if he were on fire. “Oh, by the way, would you please sign the consent form so we can put your son and family through another round of hell?” Consenting for medical care when I didn’t know what an outlier was or that my son was one was easy -- especially when the other choice was a painful death. However, consenting to treatment when I knew exactly what the side effects would be was something else entirely.
How could any good father willingly allow his son to suffer? The very thought made me hurt more than I knew I could hurt. It was also about this time that things were starting to fall apart at work, my other kids were needing my attention, and my poor wife and I were just trying to hold on. I had hit rock bottom and was starting to dig. I wasn’t progressing any spiritually, and I was starting to question how this all could be.
Here I was, an active member of the Church. I paid tithing, served faithfully, toed the line, and did my best to give to others. Yet, in my moment of crisis I felt alone, and it seemed that all I ever heard was “Oh, this is just God’s will,” or “You just need to follow God’s plan.” “If you just have faith, this trial will be a blessing.” Frankly, I was getting pretty tired of "God's will," and it was starting to show in my actions.
One day, I had just gotten home from a long stretch at the hospital and sat down in my home office and started to stare at the pile of work facing me when something snapped. “To hell with all this,” I thought. As a seminary teacher, I had spent years studying Church history, and there were still parts that I didn’t understand. All of a sudden, it became clear to me that if God really did have a plan, its sole purpose was my misery. Then I started to consider all the issues I had studied but never quite resolved. I could never doubt the existence of God, but I found neat ways to rationalize my predicament.
If I could just stop relying on God so much and start doing things my way then I could feel better. My mind started going in all kinds of directions, and I started to imagine I could have peace if I just let go of God and started relying more on myself, my thoughts, and my plan. Even though I had no idea what "my way" was or why it would be better, the feeling of control that came from considering this course of action was empowering. More than anything else, I wanted to be able to control the situation.
In hindsight, it was clearly foolish, but in the moment it seemed like a great idea. This is how Satan works; he takes us when we are at our weakest (physically, emotionally, spiritually) and presents what appears to be an easy solution. It's scary to look back and remember how tempting it was to abandon God and try to "control things."
After dwelling on this for a while, I decided to pray one last time and lay it all out for God. I wanted to believe, but it was becoming too much. How could anyone be asked to handle something this hard? Every time I signed that consent form I didn’t see it as giving my son a chance at life; I saw it as a consent to hurt him. I felt like a failure as a father, a failure at protecting my family, a failure at the only things that really matter.
Satan knew exactly what I was going through and knew exactly what questions to put into my mind. I clearly remembered every perceived slight and offense by each person at church. I remembered all that I had done and how little I got back. Satan was so persuasive that for some time I didn’t know which way was up.
But, in the end I did the only thing I had left. Cling to the faith my parents had taught me, I got on my knees and opened my heart to my Heavenly Father. I explained all my concerns, anger, fear, and hate. I fussed and vented and questioned how any father could be asked to do this.
In the middle of my tirade, as I was wearing myself out ranting, I had a single thought come to my mind. It was, “Do you really want to talk to Me about the pain of watching your son suffer?” That single thought rocked me. It quieted me enough to stop and listen. Then I began to look at things from His point of view, and in a sacred moment of spiritual communication I realized just how silly all my ranting was. I saw an eternal view of the purpose of life and how little this moment really was. My mind was opened, and I was humbled.
My life didn’t get any easier, and the treatments didn’t have any fewer side effects. We still took a big hit in the business, and a lot of money was lost. The events surrounding me didn’t change, but my reaction to them changed completely. I was able to handle them and much more. I really did find some joy in the tumultuous journey. (Update: October 2012. David turns 14 this month. He only has 10 months left of his 3 1/2 year chemotherapy treatment plan. The past almost two years have gone miraculously well. Even though he skipped the last part of 5th grade and dropped out after two miserable weeks of 6th grade, David has maintained 95% percent attendance and all A's in 7th and 8th grades. If things continue to go well, he will be declared officially cured in 2015. We are truly blessed.)
When I look back and realize how tempting it was to walk away from all that I had treasured, selling my birthright for the proverbial mess of pottage, it terrifies me. Could I have walked away? The idea seems ridiculous to me now, but looking back I can remember exactly how easy it sounded, how simple it was to justify, how comforting it seemed at the time.
And, as I go through life, I keep meeting people who are going through similar experiences. They hit a challenge; they find something that doesn’t make sense to them from Church history or doctrine; they begin to question, and they can’t find anyone to talk to.
So, that’s why this site exists. As one who has travelled this road and come back stronger, it’s my way to give back to others on the road. I have learned for myself that The Church of Jesus Christ of Latter-day Saints is God’s church on the earth today. More importantly, I have learned that our Heavenly Father is exactly that, our Father. He will never leave us; only we can leave him. It really is all true.