When I was a little girl, my Uncle John was the greatest thing! He didn’t live close by, so I only got to see him occasionally. He knew how to do magic tricks. He could make a quarter vanish and then pull it out of my ear. He drew pictures for me. He knew jokes and would sing songs. I loved him with all my little girl heart.

When he would come to visit our family, my mom, his sister, would dress me up and let me go “downtown” with him. He would hold my hand, and we would swing our arms. He would sing “You are my Sunshine”. People would stare at us as we walked. Him singing and me giggling. I knew that they stared because they were jealous. They wanted him to be their uncle, but he was my Uncle John.

I knew my Uncle was “different” in some ways. Sometimes people that didn’t know him had a hard time understanding when he spoke. He also wore a hearing aid. It had a band that went over his head to right behind his ear. It also had a cord that ran down his shirt to a “mic” that he kept in his shirt pocket. Once when I asked him how it worked he told me it was a bone conductor and placed it on my forehead and then my chin. I was surprised as a little girl to know that I could hear out of my chin.

As I grew older I knew that other people thought he looked different. Sometimes I would watch him, looking as hard as I could to see what was “wrong” with him. He just looked like Uncle John to me. My mother told me that when he was born in 1935 in a small hospital in Vermont, the doctors told my Grandmother to take him home to die. They didn’t know what was wrong with him. My Grandmother refused to let him die. When it was apparent that, because of the hole in his palate, he couldn’t drink from a normal baby bottle nipple, she found a lambs nipple which is longer and went past his palate. The problem was that it was too hard, so she boiled it until it became soft. He slept in a basket that my Grandfather made and placed by their bed. When he would stop breathing, my Grandmother would put her lips on his tiny lips and breath for him. He didn’t have his palate repaired until he was 10.

When he was lilttle, the school thought he must be "retarded".  He wasn't allowed in classes with other kids.  He was teased and beaten.  Kids at school would pick on him because of the way he ate, the way he spoke, and what he looked like. The only protection that he had was from his older brother and younger sister.   My mother tells the story of his first hearing aid.  It was a big box that sat on his desk at school, with ear phones.  When he put it on, he cried and said "I can hear! I can hear!" over and over again.

I was often told as a child that when God takes something away from you, he gives you something to replace it. Uncle John was an example of this. He was given the gift of art. After high school, he attended an art school in Boston, Massachusetts. My Uncle always had paint on his clothes and shoes. He would paint anything for anyone at any time. All you had to do was ask. He painted pinstripes on cars, signs for businesses, and beautiful landscapes for town offices in New England. Through his art he gained respect and love from people. I never meet anyone who didn’t like him once they knew him. Children were still scared of him at first, but all he had to do was pull a quarter out of their ears and he won them over.

In 1991, Uncle John became sick. We discovered that he had cancer. Watching him struggle to breathe, being so weak that he couldn’t walk was horrible. I would go to the hospital and watch him sleep. He would say “I’m sorry, honey. It’s hard for me to talk today.” I’d tell him I just wanted to sit with him. I’d hold his hand and look around the room at all the cards and balloons from people that loved him. On March 17, 1993, my Uncle John died in a room full of people that loved him.  When he died, there were articles in our paper about him.  People wrote letters to the editor.  All apologized for how they treated him when the were young.  All saying what a wonderful person he was.  I miss him everyday of my life.  He helped me become the person I am today.  My youngest son, that he never met, is named after him.

Soon after he died, I saw a program on television about Treacher Collins Syndrome. The children in this program had the same delicate faces that my Uncle had. My Uncle died without knowing the reason why he looked the way he did. Knowing that he had TCS would have answered so many questions for him. We now know that my grandmother had TCS. Although hers was not as severe as his.

My Uncle was given to our family as a gift. He taught us to see the beauty in people. To not just look beyond peoples differences but to understand that those differences help to make them the people that they are. He taught us that if you limit yourself by just accepting people that are your definition of normal, you could lose out on relationships with caring, giving, funny, talented, and intelligent people. People like my Uncle John.

The story and pictures were provided by John's niece, Tracy.

If you'd like to talk to her, email her at meridenroad@comcast.net