We have all had the experience of being asked why we have a particular career, or why we ended up in a certain line of work. Because of the unique nature of my profession, it is a question I am often asked. What follows is the true answer to how I happened to be fortunate enough to end up with the most rewarding job in the world.
I was a couple of years older than Stephen. We lived across the street from each other in a typical American suburb in the 1960’s. That was not a particularly good time in our history to have a developmental disability. As cruel as people can still be today they were even less tolerant in those days. The R-word was thrown around publicly without thought or consideration. When I was first introduced to Stephen his physical appearance made him seem different from anyone I had ever met, but once I got to know him I realized that he was just a kid like me that enjoyed being outdoors and having fun.
However, even as a child, I sensed that I had to be careful around him and look out for him. He was not as physically strong or coordinated as the other children. He could not run as fast or jump as high. I noticed he seemed to tire easier and sometimes if he’d had enough of a particular activity he would just sit down wherever he was. Verbally he was limited to just a couple of understandable words which made it impossible to have what you would call a real conversation with him, and yet I always felt like I was able to communicate with him. Even though we were young, we seemed to connect in a variety of other ways, so I was always able to figure out how he was feeling or what he wanted. After knowing each other for a while we developed a bond that allowed us to interact in a non-verbal way.
Stephen always seemed happy to see me. I certainly don’t think it was because I was such a good person; it was just that I was one of the few children in our neighborhood that would even go near him. I suppose I became his friend by default. The other kids treated him as young boys were prone to do in those days. They ignored him or even worse they teased him. They made no effort to understand him or to care about him as a person. For the most part, they simply saw him as a kid with some kind of problem. Although I was also immature I knew they were wrong, but I didn’t know how to express it. So I just continued to be Stephen’s friend and didn’t give the rest of it a lot of thought.
But as I grew a little older, our age difference seemed more exaggerated, and it began to make a difference in our relationship. I became interested in sports and other things that Stephen was not physically able to do. Over the next year or so I slowly started to spend less time with him. However, no matter how busy or disinterested I was, Stephen never wavered in his desire to be my friend. To him, each day was just another opportunity for us to be together. Each time I turned down his invitation to do something together he accepted the rejection without complaint and without holding a grudge. The next day he was still happy to see me, no matter what.
Finally, after many months, the guilt I felt over the lack of time I was spending with him got the best of me. So one day I walked across the street and sat down in the yard with him. He harbored no resentment for the way I had been neglecting him, and we quickly picked up where we had left off and began playing one of his favorite games. I had almost forgotten what it was like to spend time with him. There was a naturalness to his joy. There was no pretense. There was no effort to be something you weren’t. It was just two friends who liked being with each other. Stephen was almost always happy, and I took great pleasure in making him laugh. I remember it was a nice warm day, and we sat for several hours in the grass having fun together.
After all these years it’s difficult to remember exactly how much time passed without seeing Stephen again, but it must have been at least three or four weeks. I was busy with school activities and athletics, and it didn’t dawn on me that I wasn’t seeing Stephen playing outside in his front yard. Finally, one day when I came home from school my mother met me at the door and said, “We need to talk.” It was clear that this was something serious, but I was not prepared for what she was about to tell me. We went in and sat down at the kitchen table. My mother sat quietly for a few seconds as if she was carefully trying to choose her words and then she looked at me and softly said, “Stephen died yesterday.”
For a moment the entire world stopped. It took several seconds for the words to really make sense. Suddenly I felt like I couldn’t breathe. My mother sensed my reaction and reached over and took my hand. Although I tried not to, I began to cry. There were a million questions flashing through my mind. How could this be? What had happened? Had he been sick? Is that why I had not seen him outside his house for a while? How did he die? What was the cause? The realization that I would never see my friend again slowly began to sink in.
As it turned out, I never learned the specific cause of Stephen’s death, and I really didn’t want to know. I heard once that it was some kind of infection that he couldn’t fight off, however, another time I heard that it was a medical condition he was born with – but how he died was not the most important thing. It was the way he had led his brief life that mattered. I had never once encountered Stephen when he wasn’t happy to see me. He was always laughing and cheerful. In many ways, he seemed to enjoy his life more than I did mine. I never saw him hurt anyone or be mean to anyone. He acted as if everyone was a potential friend no matter how they treated him. He simply wanted to be accepted. He wanted to participate. He wanted to be included in life, but because of the mindset of that era, he was asking for too much.
A couple of days later my family attended Stephen’s funeral. As we sat silently in the sanctuary watching people file in I couldn’t take my eyes off of his casket. None of what was happening seemed real. A few minutes later the quiet gave way to the sound of young voices coming down the aisle behind us. The row of pews immediately in front of us was empty and the children and the adults accompanying them sat down. I looked up and there sat several children with developmental disabilities just like Stephen. They were his young friends whose innocence was heartbreaking.
It quickly became clear that not all of the children fully understood what a funeral meant. They had many questions and the adults quietly answered them as best they could. One child asked if Stephen was just sleeping and if he would eventually wake up and come back to be with them, but they were told that would not happen. In this case, Stephen would not wake up, and this would be the last time they saw him. I vividly remember another adult patiently explaining that even though Stephen’s body was here at the front of the church he was actually still with us because he lived in each of our hearts. The questions and answers continued but, thankfully, time has blurred the rest of it.
As I’ve grown older, I’ve begun to realize that we often have no idea of the impact we are having on others – and we certainly have no way of knowing what our influence will be once we are gone – but I do know that the impact of this one little boy’s life continues to this day.
Because of the lasting impression that Stephen made on me, I chose to work with people with developmental disabilities and other types of intellectual challenges. It has been a wonderful experience. The people I get to interact with every day are funny and happy and filled with a joy for life that we should all share. I learn from them, and I do my best to try to understand their perspective of the world. At certain times I look at my coworkers, and I can see Stephen’s face. Even after all these years I still cherish the memories of the fun we had as friends and the time we were able to spend together.
I was prompted to write about this episode in my life because I recently saw Stephen’s mother in a restaurant. She did not recognize me, but even after all these years, and despite the fact that she is now quite frail, I instantly knew who she was. She sat right across the aisle from me, and for the next thirty minutes or so I thought about what her life had been like through the decades without her son. I am sure that even after all this time she still feels great pain each year when his birthday comes around. I can imagine that each Christmas she feels the same enormous grief and emptiness that any parent deals with when they’ve lost a child. And I’m sure that the anniversary of Stephen’s death each year is a source of both fond memories and the agony of wondering about what might have been.
As I watched her, I thought about what a brave person she was. First, she did her best to raise a child with a disability at a time when there was not nearly the level of assistance and support that exists now, and then she had to bury that child. I felt enormous respect for her. She ate her meal without speaking to anyone and then she was gone. Our lives had briefly intersected again after all these years, but we would forever have something profound in common. Each of us had been changed by a young boy with a developmental disability.
My mother died in 1974 at an early age. The reason I mention this is because she was laid to rest in the same cemetery as Stephen. Each time I visit her grave I slowly drive by the area where he is buried. I never get out of the car, but I’m always aware of his presence. It is a sad but peaceful place, and someday I will join them there, but for now, life continues on.
It is critically important that each of us takes the time to remember the ones who have played a defining role in our lives. We must be thankful for the individuals who had a positive influence on us. We must appreciate those who played a part in shaping our lives and who helped to make us better human beings. I have been blessed with many such people in my life, but Stephen, in his gentle nonverbal way, spoke to me as much as anyone.
I still miss my childhood friend.