I never love more unselfishly than when I am calling out Bingo numbers. It’s never B-5 because we’ve lost that ball. There’s B-12 to which my mother always says, “Those are the shots I get once a month, Dawn.” And calling out “I-21” always reminds me of a Bingo game I won in the 7th grade.
To play Bingo, I am sitting on the bright pink and orange bedspread in my 38-year-old daughter Dawn’s room at The Virginia Home in Richmond, Virginia. She is in her wheelchair, peering down at her Bingo cards, and my mother, now almost 80 and walking with a cane, is perched beside her in a chair, telling Dawn for the thousandth time since we’ve been replaying this scenario that she will finally beat us both.
Caring for a handicapped family member is nothing new to our family. Before Dawn, there was my Uncle Billy, my mother’s brother, who was fiercely sheltered and loved by my grandmother from the time he was born in 1935 with Down Syndrome.
I remember my grandmother from a time she was much younger than my mother now is. I remember her as a woman defined by organization and devotion to duty. There was a place and time for everything. Heaven forbid if I put the orange juice in front of the pitcher of evaporated milk in the tidy refrigerator!
As a teenager, just for mischief’s sake, I would move the gold, leaf-shaped candy dish one inch to the right on the end table when I visited just to see how long it would take her to tell me to move it back in its place.
And memories of her sitting in her wicker chair reading her Bible under the pink lamp every night after supper at exactly the same time were an early inspiration to me long before I joined the Church and learned the importance of scriptures.
Her extreme organization and schedules used to irritate me, but now I know it was her way of coping with her life.
Most importantly, the way she loved Billy was one of the first examples to me of unselfish love. He was born back when there were no Individualized Education Plans or self-contained classes. The doctors advised my grandparents to “put him away” because he wouldn’t live to be 20 anyway.
My grandmother bucked the system and the doctors, though, and sent him off to the Virginia School for the Deaf and Blind, even though he was neither, across the Chesapeake Bay for two years when he was six where he learned to read and write. Her sacrifice brought him endless joy in the years to come as he read and copied lists of shows and actors from the TV Guides and kept meticulous track of Saturday afternoon wrestling on 3X5 cards.
A sentence remembered
One Sunday dinner when Billy was in his early 30s, my grandmother announced to our table of aunts and uncles and cousins that “the hardest thing you will ever have to do is admit your child is retarded.” I don’t remember the context, but I doubt it was, “Here, have some butter beans. And isn’t the chicken crispy today? The hardest thing you will ever . . .” But I remembered that sentence.
I remembered it in raw despair some twelve years later as I lay on my bed sobbing, hearing the words the psychologist had spoken to me that afternoon about my oldest daughter: “Yes, Dawn is mentally retarded.” (That was before terminology had to be politically correct.)
Behind his words in my mind was my grandmother standing behind the butter beans and the fried chicken. That was the hardest day of my life at that point, even harder than the day the doctor addressed his assistant, not me, and said, “Well, the family shouldn’t be surprised to know Dawn has cerebral palsy.”
Square pegs and round holes
I hadn’t always loved Billy as he was. As a young child, I stayed annoyed that we had to watch Lawrence Welk every Saturday night and he didn’t always choose me to beat his bongo drums to the champagne music. And why did he get the only bathroom for one full hour every night for his bath—from six o’clock to seven o’clock on the dot—while my bladder nearly burst with supper’s big glass of iced tea?
When I discovered adding and subtracting, I decided Billy needed to learn this too. I carried problems, printed out in my first-grade handwriting, and neatly placed them in a basket outside his bedroom where he was playing in his room with my younger sister. I was the noble one—I would teach him and enrich his life. He would be forever grateful.
I crept back later to see my basket outside his door. I eagerly unwrapped the papers to find that he hadn’t even tried! He had rejected my attempts to educate him and continued happily engaged in some childlike activity with my sister. I asked him about it, but he didn’t answer. He just looked back at me with his innocence and a question in his slightly slanted eyes that I remember as “Am I not good enough for you the way I am now?”
I remembered that day again years and years later as I cried and railed against my life in the living room. Dawn was then twelve and sitting in one of the bolster seats my father had made her to accommodate her tight muscles and lack of balance. Her favorite activity was to color with a device strapped to her hand. Hour after hour she would color, demanding a new “cuh-wer” every few minutes. Other girls her age—I knew because I had another daughter a year and a half younger—were begging to wear makeup and shave their legs and go to the mall and meet their friends at the movies.
“Is this what she will be doing when she is 16 and everyone else is dating?” I cried. “Coloring like a three-year-old?”
I had tried for so many years to trim the square peg of her life into the round hole that was everyone else’s. I had bought bigger and bigger car seats that fit into frames that were like wheelchairs but weren’t wheelchairs until finally my parents made the painful call to order one. I had begged and insisted at meetings with teachers that Dawn could do, achieve, read, catch up, be normal one day.
Putting the basket down
One day, though, I had to put that basket back down outside the bedroom door. Dawn had to be good enough and worthy enough to be loved the way she was, the way my grandmother loved Billy, the way she fit her life around Lawrence Welk and turkey noodle soup with exactly 11 crackers at exactly 11:45 in the morning.
I don’t think I’ll ever sacrifice my time and life as unselfishly and completely as my grandmother did, but her example is always before me, urging me on and threatening me with an eternal accounting I’ll have to make to her one day about how I cared for her great-granddaughter.