Thursday, September 14, 2006

remembering Robbie

My husband and I went on a motorcycle ride last Saturday afternoon. The weather was beautiful as was the scenery, with leaves starting to turn this time of the year. We decided to stop at a small diner on the way and have some lunch. The place we chose was alot more gravel than even blacktop, but it was nice to just sit and talk. We sat down, and shortly after another group of people came in. I presumed it was a family, and didn't notice much more until I heard a very distinctive and familiar sound. I looked up to see a little girl sitting in a high chair. She turned to me with sort of a blank gaze, and I could tell she had Down's Syndrome. I could also tell the familiar sound was her. She clamped her teeth together sideways and made a grinding noise that I hadn't heard in so long. But it instantly took me back to childhood.

I don't think about my brother, Robbie, much. He died soon after I was married. The funeral was on a rainy day, and there were only a handful of family members present. It was over quickly, but I recall feeling little except anger on that day. A priest read some inane poem about angels on earth, and I instantly resented him. Robbie was profoundly mentally retarded. The doctor who delivered him could not tell my parents why. All I know is, this longed for and only son, named for my father and grandfather, would never be the boy they had so hoped for. I could picture what he might have looked like from early photos. He had huge brown eyes, thick, jet black hair, brows, and long eyelashes like my son and family features, that while distorted by his handicap, were clearly present. He would have been such a handsome man. But he wasn't. He was an infant trapped in a growing body, unable to control himself and more dangerous to our family the older he became. It is as though to make up for the terrible loss of mental ability, he had enormous physical strength. He was impossible to catch if he took off running, which he often did, straight into a street. Rob lived at home for awhile, and I remember that sound, while he was in the play pen, of constant drooling and teeth grinding.

I know only from comments my father later made about Robbie, that my mother never got over the guilt of having to place him in a "home". They went to another priest for counsel, and as my father related, he made my mother feel less than a mother for seeking to "give her son away". There were already four children in the family, four girls, one a baby. I think my father's rage at this never left him. I only knew that a few times a month, or maybe only once a month, we went to the "home" with plastic straws and treats. Rob loved to chew on plastic straws. We would drive up to what appeared to be a farm, with horses and wide open space. The house was huge, and there would be parents and siblings with children in wheelchairs, on crutches, or just sitting and staring blankly, clutching themselves. Each family had their own familiar little dance of rituals, unique to them, to spend time with their child. It must have looked like a circus freak show to an outsider, but we never questioned why we were there nor thought it unusual.

As I grew older and we moved, where to place Robbie was a huge concern, not only physically, but financially. It was like having a child perpetually in college. Any kind of public assistance or aid was almost impossible because my father was too successful. I remember our first out of state move. A home was found near the town where we lived, and I was a middle schooler by then. I went with my mom to visit my brother, and it dawned on my slowly how much grace it must have taken her to walk through those rooms of steel cribs with teenagers in diapers to her son. Her heart must have been ripped from her chest with every visit. I often wished I could have traded places with Rob. I always felt like the token male figure even though I was a girl.
I seemed to want to be the son my parents lacked. A family of five girls could certainly spare one. I don't think I ever got over this feeling.

The older I got the more awkward the Robbie situation was to me. I rarely visited him. As he grew he had physical problems connected with the handicap, and I believe congestive heart failure finally killed him. He outlived my poor mother. I think guilt and exhaustion made her heart give out as well. I wish I could have loved my brother in a way that would have made an impact on my life, but I did not know how. He could not respond and he repulsed me at times, which made me ashamed. I look forward to seeing him in heaven, but the sentiment reeks of that horrible, cloying poem that did not reflect the struggle, the sadness, the loss, the guilt, the Herculean task of loving and caring for a child who would not ever care for themselves. Did I only want him normal and not drooling, a "retard" who wore a diaper all the time and didn't recognize me? I was angry, so angry at this. I looked at the child in the restaurant and wondered what life would be like if she were mine. I'd like to say I'd feel tenderness, joy and all the pride of being her parent, but I don't know. Dear God, help me bear my own handicap.


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