I remembered it as if it were yesterday. I was sitting at the table with my arms crossed, and my back slouched in the chair. I was there for some time just staring at this bizarre man sitting across from me. He had a calm demeanor and seemed content just twirling the tips of his hair through his fingers. He kept his legs crossed and seemed to make an oink sound over and over that reminded me of a pig. He held two packs of Marlboro Light cigarettes next to him on the table and repeatedly stated the fact that he had them, as if I couldn’t hear him or something. He would stare back at me like he was a champion of a staring contest, without any expression at all. He was a grown man acting like a child. I was only twelve, and wasn’t so sure I liked him.
My mother sat down with me and with a very compassionate voice started rambling on about life and how this may be hard but he needed us. She told me that his name was Bob, he was 35 years old and had Down’s Syndrome. I found out that his parents had passed away and that he had to live in a home for people with disabilities. She said that he would never grow up, kind of like Peter Pan. I thought that was kind of cool! She told me he was diagnosed with lymphoma cancer and that he only had about a year to live if someone didn’t help him. The doctors told her that it was amazing that he had lived this long. They didn’t believe the treatment would work and wanted to just let him go. She told me that he didn’t have anyone to stand up for him and that she wanted to help. At this time people with disabilities were cared for at home or went to special schools, so I was never around someone so very different from me. I was confused about him but understood how important it was to my mother. I was soon not going to care too much about his disability, just about him.
It was only a few days before I realized that this guy was a lot of fun! He would chase me through the house with his bandanna wrapped around his face like a cowboy, shooting me with his toy guns. He loved watching all my cartoons with me and I liked that we both enjoyed agitating my mother. He always asked me if I wanted a knuckle sandwich, then he would raise his fist and ask if I wanted to fight. I would always say yes and we would both start laughing and tickling each other. He loved to play karate chop and pretend he was the lion from the Wizard of Oz. He had bookcases full of tractor books and had ten etch a sketch’s. I would come in the room and he would be bent over with his face two inches away from a spiral notebook in his lap. He would fill an entire page of scribble and then explain the adventure he drew about. He had short brown hair that stood straight up in the front from twirling it all the time. He was short and only wore blue jeans and tee shirts with a brown belt. Bob and I settled in together nicely. My mom took him to a new doctor and his cancer treatment began very soon after. All his hair fell out and he didn’t even care except that he kept trying to twirl his fingers through his hair that was already gone. He didn’t even act sick or complain the whole time he received his treatments. His illness seemed to drain my mother quite a bit at first, but after he was able to beat the cancer, we were all home free.
Time seemed to fly and before I knew it I was eighteen and moving out. At times I wished he would have grown up with me but at the same time I was glad that he was able to stay fun and carefree. I got married and had three kids of my own. Bob loved it when they came to visit. Soon he was chasing the girls around the house and having a good time with them like we used to. The kids would ask him what sound a dog makes and he would meow or moo and make chicken sounds. Everyone who met Bob loved him and couldn’t get enough time with him. It reminded me so much of our time together. Soon my girls were getting bigger and once again, Bob was left as a child, as everyone grew up around him.
His mind never aged but unfortunately, his body did. As Bob aged, his health began to decline and my mother was no longer able to care for him. He was wheelchair bound and needed total care. As much as it killed her to admit it, she couldn’t physically lift him any longer. After time my mom agreed for him to come live with me, but we both knew it would be hard for her and Bob. It was an adjustment for my family also, but there were never any complaints. We all worked hard but his cheerful attitude and precious smile was worth every moment! I soon stopped complaining about the little things in life and tried to see life from his eyes. He was inspirational and showed me that there is so much more to life than what I give life credit for. He never lost his sense of humor no matter how bad things got. I would go into his room in the morning to get him out of bed and he would tell me I was fired. I would beg for my job back and he would laugh the whole time. He was my brother, maybe not by blood, but more importantly by love. Almost twenty years had passed and my life was changing all the time and his remained the same.
Eventually we had to call in a hospice nurse to help us. He was on oxygen and we were spoon-feeding him baby food. He was dropping weight every day. He was fifty-four now and it was rare at the time for someone with Down’s Syndrome to live past their thirties so we were lucky, but it didn’t seem that way. It was a long few months and we all knew the time was coming but we didn’t talk much about it. I was getting ready for bed one night when the nurse called me upstairs. She said Bob was having trouble breathing, that she was going to give him medicine to help him relax, and that we should call the family because things didn’t seem good. I couldn’t believe it. He had a great day, better than most. I asked my husband to call the family and went to be with Bob. I grabbed his hand and started to rub his fingers.
“Bob, can you hear me honey?” I could see his chest rising slowly trying to take a breath. He didn’t reply but I could see it in his eyes. He was scared and I needed to make him feel safe. I picked him up as if he would break into pieces if I made one wrong move. I sat on his bed and held his weak and famished body in my arms like he was a child. He leaned his head to the side and rested it on my shoulder. I could feel his last breaths flowing across my neck. As we sat together, I held tighter to his body, praying that he wasn’t in pain. My tears were flowing uncontrollably but I didn’t dare make a sound in fear that he could hear me crying and get frightened. I was ashamed of breathing as I felt him take his last breath. He was gone and I was lost. His nurse walked out and shut the door. I gently laid his lifeless body down and covered him up as if he was just going to bed. What I would give to hear him laugh just one more time. I leaned down, kissed him on his head and spoke.
“I love you buddy”