This is a story that been developing for over eighty years. I have shared bits and pieces of my brothers story with many people over the years. It is both a heroic and a simple life story that illustrates a remarkable will to survive.
My brother was born in 1937. No much was said or discussed about his birth and I had to piece much of it together over many years. He was born premature and weigh around 3 lbs at birth. He was delivered by a mid-wife and my grandmother Isom at the family home in the small town of Coulterville, Illinois. My dad was not present and had little to add to the story of his birth. I did get a sense that their had been some sort of dispute before the birth. The story gets a bit murky here. I was told he was place on an oven door to keep him warm until the town doctor could see him. My grandmother tells of feeding him with an eye dropper and caring for him for several months before he was strong enough to sleep through the night. His prognosis was not good and they were just waiting for end. Remarkably, he survived and only his motor nerves were damaged and he exhibited a keen intelligence as a young boy. My grandmother told many stories of how smart he was.
I first new something was wrong when I went off to Kindergarten. It seemed strange that my constant companion was not going with me to school. I vaguely that he could not walk and that he needed to be carried but it did no seem unusual until that day in September 1944 when I began school. I return home from school each day for well into my high school years and resume my duties as his companion until bedtime. When I complained about not being able to play with my friends. My dad would call me selfish and I should be happy and grateful that I was not “crippled” like my brother. Those were very hard years for our family. My dad had trouble keeping a job and my mother clean houses and worked as a waitress until I graduated from High School. When I left for college my dad finally was able to keep a job and my mother took care of my brother full time. She spent everyday with him until her death in 1994. My brother took my mothers death very hard. She was his constant caretaker. She did get a break for a few years. The local school district provided a tutor for three years and my brother got his eighth grade certificate. That is all the formal education he received until I resume taking care of him after my mother died. My mother help him learn to read and helped him with his speech. My mother and I were the only ones who could converse with him and he rarely spoke until I returned from college. His days were spent at first sitting in a child's metal walker and over the years my dad tried to find a way to help him walk. My parents tried many things but nothing seemed to help Little was know about how to help cerebral palsy victims to walk. Today, many victims are taught to walk and are able to lead productive lives. They took my brother to Shrines Hospital and he was fitted for braces. However they were very heavy and he did not have enough strength to stand. Over the years my parents gave up. His leg muscles atrophied and started to walk on his knees to get around when he was about eighteen. My children remember him walking on his knee and playing with him. He spent a lot of time with my family and I took him with me and my family on outings. When he became to heavy for my aging parents to care for him, I once again started to take care of him more and more until my mother passed away. If you want to get a sense of the problems he faced there is a wonderful movie “My left foot” starring Daniel Day Lewis. It is the story of Christy Brown, who was born with cerebral palsy. He learned to paint and write with his only controllable limb - his left foot.
After my mothers death, my dad tried to assume my mothers duties. He had never done much to help my mom and was bitter that his first born son was disabled. It his later years he did spend hours watching television with my brother and drinking. They did develop and awkward bond and my brother did model some of my dads behaviors because he was his only male influence after I left for college. At times, his behavior was troubling. He was demanding and developed a volatile temper like my dad. I tried to convince my dad that he needed more socializing and he need to develop an ability to relate to other care takers because he was getting old and soon he would be unable to care for him. I also had five children and a wife to take care of and I could not cater to his every wish. My dad was lost after my mothers death and he started to act very strange and his behavior became very erratic. On one of my visits about a month after my mothers death, he informed me he had met a women and was planning to get married. Apparently, he drove to some town in Missouri with my brother and her and got married.
I rescued my brother from my dad and was able to arrange placement in a Cerabral Palsey home. Fortunately my brother's behavior has has mellowed because for the lasts fifteen years he has had to function in group living situation. He still lives there today and as of this writing he is in good health.
