This is a story about a little boy named Billy. Actually, Billy is now a middle-aged man, but in a lot of ways, he'll always be a little boy.
Billy's sister Sue was my best friend from fifth grade on. If she wasn't at my house, I was at hers. We went to church together, had crushes on the same boys, ate tomato sandwiches until we got hives. We were family.
Billy is five or six years younger than Sue, making him about 5 when we met. Sue was the oldest, then Sandra, Billy and Judy, who was perhaps 2. Injured in a car wreck before he was born, Billy is profoundly developmentally disabled. At 5, he still wore diapers -- and to an 11-year-old was a real pain in the neck! Someone always had to "watch" Billy, you see. He couldn't be left alone to play by himself or the next thing you knew, he'd have the burners turned on, water running in the sink and the dog -- "Skippy," although I have no idea why I remember that -- in a stranglehold.
At that age, the only thing two girls want to do together is giggle -- preferably alone in a bedroom. They do not want to babysit, especially not for a 5-year-old who makes messes both in his diapers and throughout the rest of his world. I sometimes resented Billy -- and I know his sisters did, too.
Now that I see life from a different perspective, I wonder how his parents survived. Even with four "normal" children ranging in age from 11 to 2, they would have had very little time for themselves. With Billy, they had none. Yet somehow, they always managed to be happy together. Sometimes we would babysit while Sue's mom rode with her dad on rounds in the oil field. For all I know, they may have sneaked off to park in the moonlight, but at least they were alone!
And that was the only time. As Judy grew up and went to preschool, that left Mom home with Billy. Eventually, they decided it was time to put him in school, too, and off he went to a city two hours away. He did fine as far as adjusting, although I must say his first acquired skill probably made the most impact. No one had ever yelled that word in the sanctuary of the fundamentalist Baptist church they attended. Or yelled it repeatedly while being carried out the front door.
Oddly enough, though, I had to work to dredge up most of these memories. The things that have stayed with me were Billy's successes: the day he was able to put the "rings" on a rocking spindle toy; the day he learned to ride a tricycle; finally understanding the concept of dressing himself; toilet training. I can remember the incident with the rings like it was yesterday. We clapped and carried on like he'd just invented a nuclear reactor. And for him, he had.
As I thought back about Billy, I was surprised to realize that no one was ever ashamed of him. Even as a teenager, when everything is embarrassing, we just took him in stride. I imagine we can chalk that up to good parenting -- which is also true of Billy's success. He went further than anyone could have dreamed in those days. He lived alone in an apartment, got on the bus and went to his job at the sheltered workshop and proudly made toast for his sister when she visited. In short, he grew up into a life.
Yes, there is a point to this story. As the mom of a young woman with special needs, I continue to endeavor to do as well as Billy's parents did. When this column originally ran in 1991, I was convinced the Little Queen wouldn't be as profoundly delayed as Billy. As it turned out, she is perhaps more so. I expected love to make her ordinary. It could not. But she is extraordinary because she is loved and loves in return.
Isn't that the only thing everyone really wants?
NAN Profiles on 04/21/2019