Oh, Little Brother

He was 11 when he passed away...born January 4, 1971. Diagnosed with Hurler's Syndrome in 1972. They didn't think he'd make it to the age of six, but surprisingly, he did. The family and doctor decided that it would be in the best interest of everyone involved to institutionalize him at the age of six. He became stronger, more difficult to subdue and as a result of his illness, he cried in pain all the time. All I can remember about sending him off is turning around in the backseat of the car, watching him stand in the window of the facility with his legs crossed crying and clawing at the window as we drove away. He knew we weren't coming back for him. As the years progressed, his mental health regressed. I only got to see him two times in five years. The first time, for whatever reason, the staff at the institution had him tied down to his bed. He remembered me when I walked in, knew my name, and was excited to see me. The next time I saw him, he was in a wheelchair. He could no longer walk, nor could he support the weight of his own head. He didn't know me anymore by then. It broke my heart to see him suffer. There were several calls through the last five years of his life, wherein my father was called upon to make big decisions with regard to his health. His lungs collapsed any number of times, and there were heart complications which involved cardiac arrest. Life support or no life support, and he always chose to keep him alive. Call me crazy, but if I saw my child suffering and crying in pain everyday, I might have to allow nature to take its course without interference. I would demand that my child be as comfortable as possible during that time to make things more bearable. I would lay next to him and hold him close, until he finally passed. It is my thought that my father chose to keep him alive out of guilt and shame for not looking back after he dropped him off at the institution. He had been invited to any number of events which were hosted by the variety school in which my brother attended, but he didn't go...wouldn't go. They were thrown away. I would dig in my father's garbage bin just to find out any bit of information about my brother as the school would often send him reports. It was my intention to break him out of the place once I turned sixteen and had a car, but he couldn't make it. I was going to rescue him...I was fifteen when he passed. I was relieved to learn of his passing. I was relieved to know that he didn't have to suffer another day of pain and agony. I remember standing at his fresh grave. My father and grandmother were in tears. I quietly stared at the hump on the grave thinking about how much I loved him, missed him beyond belief, but was utterly happy that he was finally free.

While he was alive before he was sent away, he and I were both badly abused.  Whenever possible, I took the blame for whatever mistakes he made so he didn't have to suffer for it.  This was our song, we sang it together loud and proud!  We were the Champions.