By Ben Byer

I am a single father living with a neurodegenerative disease that has a life expectancy of two to five years. This is year five.

As my body has gone through many changes over the past five years, so have my parenting methods. When my son was two and I had recently been diagnosed, the mental challenges of facing the reality of my life seemed insurmountable. I was in a fog, and the only thing that raised me out of that was my young son pulling on my toe in the morning, saying, “Up, up!” He was ready to start the day and whether I wanted to or not, I was going to be a part of that day. Simply getting out of bed and being present for my son John, was, in retrospect, a life-saving action.

One year later, we were traveling to Oregon to visit a childhood friend of mine. After three connections and nearing 11:00 PM, my three and a half year-old was exhausted. He did not want to get up from his seat on the plane. After everyone else had exited, I was still trying to convince him that walking off the plane was the best choice for both of us. But he was upset and tired and now in a full-on wail. A stewardess said, “You need to pick him up.” The degenerative disease had weakened my arms to the point that opening a can of Spaghettios was impossible. A gallon of milk weighed three hundred pounds, and my son, in a full-on temper tantrum, was impossible to carry through an airport. A woman on the cleaning crew sensed there might be something else going on and suggested we grab a wheelchair to carry him out of the terminal.

Most boys love to wrestle. When I was a kid, I wrestled with my brothers, often taking a beating, but once in a while putting in a couple of good licks of my own. John is one of the tougher kids I’ve met and relishes in the enjoyment of a good smack-down. My arms are no match for his dexterity and strength, but my feet and legs still work pretty well. This summer, while we were in Colorado, he decided to test my skills, first patting me on the head and then running around to escape my glance. The pats became gradually harder, until they were downright annoying. Using my brains to outwit a six year-old, I asked him nicely to come in front where I could see him. Then, when he was least expecting it, I took him down with a leg around the ankle and the other in the chest. This is a move that I have perfected, and within seconds he was pinned on his stomach.

I held him here for a good long time, smacking him on the butt with my foot to remind him of who is boss. My college roommate, who we were visiting, convinced him that the only way out was to call “mercy.” After an agonizing three minutes, John gave up – for the moment. He stood up, paused, and went in for another attack. In the heat of the moment, I shoved him a bit too hard with my foot. He was knocked to the floor and bumped his face on the edge of the sofa. It hurt. He ran upstairs and refused to come out for twenty minutes, angry that I had caused him so much pain. I felt horrible for my miscalculation. Unable to climb the stairs to console him, I was left listening to his despair.

I try to get other people to play baseball with my son. Reading him a story takes so much of my energy that I make him read stories to me instead. My friends, family and assistant all try to teach him the lessons that I am unable to give: how to play chess, ride a bike, work a digital camera, to tie his shoes, even some stern reprimands for inappropriate behavior. I have become more of an overseer of my son’s rearing, often watching as others get more involved in his life. The details are too depleting of my energy, so I work in broad strokes to maintain an environment that is conducive to his development and growth. Sometimes, I’m really good at this and relish my success as a manager of my son’s life. Often, I fail miserably and regret my lack of judgment.
But I must be doing something right. At 4 AM, after a thirty hour train ride home from Denver (Amtrak sucks), I was helped off the train to a wheelchair that we had just bought for this trip. (Using a wheelchair was a milestone that I never wanted to reach; no one does.) When I sat down, John, who ten minutes earlier had been woken up from a dead sleep, saw that I was struggling to put my arms on the armrests. Without being asked, he gently lifted up first one and then the other to make sure that I was comfortable, then he placed my feet on the footrests. I looked at his half-open eyes and said, “Thank you.” “You’re welcome,” he responded. John is six years old.

On a few occasions, John has asked me about death. One day, I was walking him to preschool, and he said, “Are you afraid to die?” Unsure of what the appropriate answer is for a small child, I said, “No. I’m not.” It was the truth of what I was feeling at the moment. Maybe I was overcompensating, because deep down, I probably do have a fear of death like most people. I heard my son repeat this anecdote in his own words last week. He said, “My dad is not afraid to die.” In a way, it is true. I’ve had so much time to think about my mortality that I’ve exhausted the fear out of my body.

I used to be afraid that my son would be at a loss without me, that if I left this world, he would suffer. This is true on one level. But I have also learned that through suffering comes growth, and John has grown well beyond his six years. Often, I fear, too much. But I do not worry about him. I know he will not only survive the challenges he is faced with, but use them as stepping-stones to greater achievements in his life.

December 11th, 2006