FIRST PERSON
Volume 1 Number 4
Let Them Be Themselves
01 December 1987
When I visit our son Dickie, he doesn't say, `Hello, Mother, I'm glad to see you. I wondered if you might come today.' Sometimes I wonder if he thinks these words, even if he is not able to express them.
When I visit our son Dickie, he doesn't say, `Hello, Mother, I'm glad to see you. I wondered if you might come today.' Sometimes I wonder if he thinks these words, even if he is not able to express them. What he does say, full of excitement, is `Mommy!'.
Although the calendar shows that he is 44 years old, Dickie is a child in a man's body. He lives at our state institution for the mentally-retarded. He was the youngest of our three children - and the second of them to suffer brain damage.
When Otto and I met we werefull of high hopes. We were university graduates and expected to have normal, if not superior, children. Our first baby was perfect. We named him Michael, which means `who is like God'.
One evening, about a month later, we tiptoed into his bedroom. The wall next to his crib was wet with regurgitated milk. He was having a violent convulsion. The doctor came, then the specialist. At hospital they found blood in Michael's spinal fluid. He had suffered a cerebral haemorrhage.
We were told that Michael might not live and if he did there might be brain damage. Somehow we were able to take this in our stride. The baby was still alive and he was still our baby. And maybe he would fool the doctors yet.
Michael came home a week later. His head grew large because of the brain damage, but his outgoing personality charmed all who knew him. Once, when he was four, I knocked on the playroom door, saying `Open Sesame'. `OK,' he answered, `I'll Open Sesayou!' He did that with his life - opening experiences to his parents which we never dreamed of.
Walking
Our second baby arrived - Paul. He is now a professor of chemistry and he and his wife have two daughters. Our third baby was also a boy - Richard. Apparently perfect at birth, he had a convulsion at the age of three weeks. In a state of shock, we rushed-him to the hospital. He too had had a cerebral haemorrhage. It was a stunning blow.
Richard was slow to sit up, slow to talk and he could not stand because his feet rotated inward. I felt that if his feet could be held straight he would learn to walk. The Berry Foundation in Portland fitted him with what we called 'duck feet', flat metal pieces that strapped onto shoes, with links between so that the feet could move. As soon as they were in place Richard stood alone for the first time in his four years. He spoke a new word, `Happy, happy, happy.' Six months later he could walk on his own, without the duck feet.
I was emotionally and physically exhausted, carrying Richard or crawling on the floor to help him learn to walk, keeping a stiff upper lip. My mother came for a month so I could get away for a complete rest. I returned refreshed and the struggle went on.
Michael had a second `stroke' when he was six. Richard was not improving. Our friends told us we were wonderful, but we were broken-hearted. There was tension and resentment in our home. I thought everyone should be considerate to me because of the extra load I bore.
One day I sobbed out my problems to a friend. Instead of giving me sympathy, she told me that what was wrong with me was `self-pity'. Her words struck me like a slap - what right did she have to say that? But I answered `yes'.
I slept through that night for the first time in months and awoke with a new feeling. My heart was shouting for joy- `I'm free!' I was overcome with the miracle that had happened. My circumstances were the same, but my attitude was changed.
Everything wasn't easy from then on. But the change in me gradually affected the whole family. Even Richard became less hyperactive and we attempted to give more care to Paul.
Richard had some speech therapy and said `Dickie' for the first time when he was six. He was seen by several doctors. They determined that two areas of his brain were damaged - the motor area, causing cerebral palsy, and the hearing area, so that he could hear, but not interpret what he heard in speech. His special school suggested he should go to the Fairview Training Center in Salem.
We were crushed. We had tried everything. This seemed like the end of the road. We applied, but there was a two-year waiting list. That was hard - you say goodbye to the one you love, and he doesn't leave. Dickie was a toddler in an eight-year-old body - he could climb, he could get into things, he was not bathroom-trained. Caring for him kept the whole family - and some priceless friends - busy.
I have always had a problem with my temper - it easily spins out of control. Every time I had to use scissors or a knife I prayed that I would not lose my temper and hurt one of the children. I prayed not just for one day at a time, but for one hour at a time, one minute. Sometimes I felt like throttling Dickie - but at the same time he was so loving and sweet.
Dickie entered Fairview when he was ten years old. Instead of a dead end, it has proved to be a turn in the road, leading to new adventures.
Counting
When Michael was 18 he said he would like to live at Fairview too. He was proud to be leaving home, like other boys. After six happy years there, he died aged 26.
Dickie can count `one, two'. I'm sure if one worked at it, he could get to `three'. But would he have any concept what the words mean? What is the point? To satisfy the teacher? To prove it can be done?
Why not let Dickie be Dickie? He may not be economically useful, a success in the world. But maybe he is useful in a different way.
When I visit Dickie, the love in his voice when he says `Mommy' is all I need to hear. I know then that `nothing can separate us from the love of God'. And we are grateful.
By Claudia Hudrlik
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