Blog created & maintained by Brayden Alexander Global Foundation for Hydranencephaly, Inc. which does business as Global Hydranencephaly Foundation; a registered 501c3 nonprofit organization supporting families across the globe who have been given a diagnosis of hydranencephaly.
Monday, July 4, 2011
The Power of the Powerless
A great amount of effort goes in to caring for a child with hydranencephaly, or any other medical complexity for that matter, but what is often overlooked is the amount of effort that goes in to caring for the siblings as well. I am often criticized for being very open and direct in disclosing everything about Brayden to his sisters, who are currently 9 and 6. "They're too young to understand," or, "you're putting too much stress and worry on them," or even worse, "you should have thought about their feelings when you made the decision to bring Brayden home." Brayden is a part of our lives, so his condition and all aspects of it will be as well. Knowledge and understanding, with a heavy dosing of inclusion, are the ingredients to a successful family... despite the stress and turmoil that fills parts of our days.
I can only pray that rather than either of them being negatively affected, they can follow in the footsteps I try to leave clearly behind... and see the positives. I can already see, that in 3 short years, how positively Brayden's life as influenced them. They don't notice differences in others, they never judge, but they are always hurt and heartbroken by others who do. Fact is, they will indeed grow to value this life experience in to adulthood:
THE POWER OF THE POWERLESS
by Christopher de Vinck
I grew up in the house where my brother was on his back in his bed for thirty-two years, in the same corner of his room, under the same window, beside the same yellow walls. He was blind, mute. His legs were twisted. He didn't have the strength to lift his head or the intelligence to learn anything. Oliver was born with severe brain damage which left him and his body in a permanent state of helplessness.
Today I am an English teacher, and each time I introduce my class to the play about Helen Keller, The Miracle Worker, I tell my students the story about Oliver. One day, during my first year of teaching, I was trying to describe Oliver's lack of response, how he had been spoon-fed every morsel he ever ate, how he never spoke. A boy in the last row raised his hand and said, "Oh, Mr. de Vinck. You mean he was a vegetable."
I stammered for a few seconds. My family and I fed Oliver. We changed his diapers, hung his clothes and bed linens on the basement line in winter, and spread them out white and clean to dry on the lawn in the summer. I always liked to watch the grasshoppers jump on the pillowcases. We bathed Oliver, tickled his chest to make him laugh. Sometimes we left the radio on in his room. We pulled the shade down on the window over his bed in the morning to keep the sun from burning his tender skin. We listened to him laugh as we watched television downstairs We listened to him rock his arms up and down to make the bed squeak. We listened to him cough in the middle of the night. "Well, I guess you could call him a vegetable. I called him Oliver, my brother. You would have loved him."
One October day in 1946, while my mother was pregnant with Oliver, her second son, my father rose from bed, shaved, dressed, and went to work. At the train station he realized he had forgotten something, so he returned to the house and discovered the smell of gas leaking from the coal-burning stove. My mother was unconscious in her bed. My oldest brother was sleeping in his crib which was quite high off the ground so the gas did not affect him. My father pulled them out of the room, through the hall, and outside where my mother revived quickly. And that was that.
Six months later, on April 20, 1947, Oliver was born. A healthy-looking, plump, beautiful boy. "Oliver seemed like any other newborn," my mother and father told my sisters and brothers and me over the years, as they repeated the story with their deep love and joy. "There was no sign that anything was amiss."
One afternoon, a few months after he was born, my mother brought Oliver to a window. She held him there in the sun, the bright good sun, and there Oliver rested in his mother's arms, and there Oliver looked and looked directly into the sunlight, which was the first moment my mother realized that Oliver was blind.
My parents, the true heroes of this story, learned with the passing months that Oliver could not hold up his head, could not crawl, walk, sing; he could not hold anything in his hand; he could not speak. So they brought him to Mt. Sinai Hospital in New York City for a full series of tests to determine the extent of his condition.
The only explanation anyone could agree upon was that the gas, which my mother inhaled in her sleep during the third month of her pregnancy, had reached Oliver and caused the severe, incurable, hopeless condition before he was born.
At the end of a long week of waiting, my parents returned to the hospital and met with the doctor, Dr. Samuel De Lange.
When our children are in pain, we try to heal them. When they are hungry we feed them. When they are lonely we comfort them.
"What can we do for our son?" my parents wanted to know. Dr. De Lange said that he wanted to make it very clear to both my mother and father that there was absolutely nothing could be done for Oliver. He didn't want my parents to grasp at false hope. "You could place him in an institution?" "But," my parents answered, "he is our son. We will take Oliver home, of course." The good doctor said, "Then take him home and love him." That was sound medical advice.
Dr. De Lange speculated that Oliver would probably not live beyond the age of seven or eight; he also suggested that Oliver be taken to another neurosurgeon to confirm the diagnosis. This is what my parents did and, yes, the second doctor repeated the first verdict Oliver's case was hopeless.
While he scanned the forms my parents filled out, the second doctor noticed that both my mother and father were born in Brussels, which led the doctor to say, "During World War II my parents were taken in, fed an protected by a Belgian family for we are Jews. Now it is my turn to help a Belgian family," and the doctor didn't charge my parents for all the tests, the care and medication.
I never met these two doctors, but I loved them all my life as a child loves the heroes in a fairy tale.
Oliver grew to the size of a ten-year-old. He had a big chest, a large head. His hands and feet were those of a five-year-old, small and soft. We'd wrap a box of baby cereal for him at Christmas and place it under the tree. We'd pat his head with a damp cloth in the middle of a July heat wave. His baptismal certificate hung on the wall above his head. A bishop came to the house and confirmed him.
Oliver still remains the most hopeless human beings I ever met, the weakest human being I ever met, and yet he was one of the most powerful human beings I ever met.
As a teacher, I spend many hours preparing my lessons, hoping that I can influence my students in small, significant ways. Thousands of books are printed each year with the hope that the authors can move people to action. We all labor at the task of raising our children, teaching them values, hoping something "gets through" to them after all our efforts.
Oliver could do absolutely nothing except breathe, sleep, eat, and yet he was responsible for action, love, courage, insight. For me, to have been brought up in a house where a tragedy was turned into a joy, explains to a great degree why I am the type of husband, father, writer and teacher I have become.
I remember my mother saying when I was small, "Isn't it wonderful that you can see?" And once she said, "When you go to heaven, Oliver will run to you, embrace you, and the first thing he will say is ‘Thank you’." That leaves an impression on a boy.
Of course it is I who must thank Oliver and my parents for defining for me the boundaries of love which were the house, the yard, the woods where my sisters and brothers and I ran in and out all day long, the fields where we ice-skated in the winter and caught snapping turtles in the summer, and all the time Oliver laughed and slept between his fresh sheets, under the window day after day.
I remember, too, my mother explaining to me that we wore blessed with Oliver in ways that were not clear to her at first. We were fortunate that Oliver's case was so severe. The best we could do for him was feed him three times a day, bathe him, and keep him warm. He did not need us to be there in the room all day. He never knew what his condition was. We were blessed with his presence, a true presence of peace. So often parents are faced with a child who is severely retarded, but who is also hyperactive, demanding or wild, who needs constant care. So many people have little choice but to place their child in an institution. Each circumstance is different. No one can judge.
I have come to believe we are here to tend to the lilies of the field. We do the best we can. If you have a boy or girl like Oliver in your home, you will know what is best for him or her, for your family. The decision is never easy.
I asked my father, "How did you care for Oliver for thirty-two years?" "It was not thirty-two years," he said "I just asked myself ‘Can I feed Oliver today?’ and the answer was always, ‘Yes I can’." We lived with Oliver moment by moment.
I remember once when I was a little boy sitting down beside my brother. I was alone in the house, and l wanted to see if Oliver was really blind, if he was faking it, so I spread my right hand over his face and shook my fingers close to his open eyes. Of course he did not blink, did not move. His eyes were brown, like mine, yet so different.
Often it was my job to feed Oliver supper: a poached egg mixed with cereal, warm milk, sugar, a banana. Yuck, I often thought I wouldn't eat this stuff. Feeding Oliver throughout his life was like feeding an eight-month-old child. His head was always propped up to a slight incline on pillows. A teaspoon of food was brought to his lips. He would feel the spoon, open his mouth, close his mouth, and swallow I still, today, can hear the sound of the spoon ticking and tapping against his red bowl in the silence of his room.
" ‘Oh, Mr. de Vinck. You mean he was a vegetable’."
When I was a child I was afraid of the dark and shared a room with my younger brother. Our room was separated from Oliver's room by a single wall. Five inches of wood and plaster divided us from each other during the night. We breathed the same night air as Oliver did, listened to the same wind, and slowly, without our knowing, Oliver created a certain power around us which changed all our lives. I cannot explain Oliver's influence except to say that the powerless in our world do hold great power. The weak do confound the mighty.
When I was in my early twenties I met a girl and I fell in love. After a few months I brought her home for dinner to meet my family. After the introductions, the small talk, my mother went to the kitchen to check the meal, and I asked the girl, "Would you like to see Oliver?" for I had, of course, told her about my brother. "No," she answered. She did not want to see him. It was as if she slapped me in the face, yet I just said something polite and walked to the dining room.
Soon after, I met Roe, Rosemary, a dark-haired, dark-eyed, lovely girl. She asked me the names of my brothers and sisters. She bought me a copy of The Little Prince. She loved children. I thought she was wonderful. I brought her home after a few months to meet my family. The introductions. The small talk. We ate dinner; then it was time for me to feed Oliver. I walked into the kitchen, reached for the red bowl and the egg and the cereal and the milk and the banana and prepared Oliver's meal. Then, I remember, I sheepishly asked Roe if she'd like to come upstairs and see Oliver. "Sure," she said, and up the stairs we went.
I sat at Oliver's bedside as Roe stood and watched over my shoulder. I gave him his first spoonful, his second. "Can I do that?" Roe asked. "Can I do that?" she asked with ease, with freedom, with compassion, so I gave her the bowl, and she fed Oliver one spoonful at a time.
The power of the powerless. Which girl would you marry? Today Roe and I have three children.
Christopher de Vinck is the author of The Power of the Powerless published by Doubleday and reissued by HarperCollins, and two books of essays: Only the Heart Knows How to Find Them (which won a Christopher Award) and Songs of Innocence and Experience, both