because it was only 15 minutes away. On Joseph’s ‘good’ days, I loaded the dogs into the back,
strapped Joseph into his car seat, and off we went. I would leave him at school and take a morning
walk with Teddy and Lily. On Joseph’s ‘bad’ days, I wrestled him bodily into the car seat while he
screamed and hit. On those days, I left the dogs behind.
About half way between our house and Joseph’s school, there was a long, thin lake. I had never driven
past it before I became his chauffeur. I began to love looking at the water as we drove along or stopped
for traffic. It was beautiful in the autumn, as leaves fell from the trees onto the water’s surface and
cattails and other reeds stood tall on the far, marshy edge. The lake was silent in winter, covered with
ice except for the water at the center. Often I saw a few geese paddling hesitantly in the open water
while everything else was locked in the cold ice.
During a mild period in February, I saw a pair of white swans gliding through the larger central space
of open water. Even when the weather became colder and the ice grew toward the center, the swans
stayed. They became a marker of time. I looked for them when I drove Joseph to school and when I
brought him home. Regardless of how cruel it became during a winter of snow and more snow, the
swans endured.
The swans were there on Joseph’s fourth birthday. I was late taking him to school that rainy March
morning because he had leaked through a diaper and his clothes. I dissolved in tears after I listened to
his young teacher tell me that I needed to get him to class on time every day: Routine, she stressed, was
important. I stood outside the building and cried, afraid I would never be able to toilet train my child,
or teach him to dress himself, or listen to him read. I wept because life seemed to have no structure
other than to survive every day.
The swans were there on Joseph’s ‘happy’ days, when we would drive by while singing along to a
much-loved animal-theme tape. We sang a song I knew from childhood, “The Ugly Bug Ball,” and I
realized he was singing hungry, not ugly. Eventually I realized Joseph did not understand what
ugliness was, so we sang about hungry bugs.
As spring came gradually, I saw the swans less often through the thickening greenery of trees and
shrubs, but I saw enough to realize they were gliding elegantly over the water with three or four
cygnets between them. They had not only survived, they had had babies.
Time moves on inexorably. Nature changes, people grow. Joseph learned to use the toilet when he was
7 years old. Last fall, at age 14, he went to a rehabilitation-based residential school program to see
how far he can progress in personal independence and what accommodations he will need for his
future. At this school, no one cared he cannot write. They focused instead on how well he could use a
keyboard. They saw academic potential where I had seen disability.
After seven months there, Joseph still cannot independently dress himself and he needs help with
utensils, but he proudly tell us each night on the phone, “I did it myself with Lisa’s help.” He reads
softly, but he loves to read. He finds it easier to read on a computer with large type than in books with
pages he finds difficult to turn.
He knows some classmates walk, some use wheelchairs, some have a white cane. Some have light
skin, others dark. He thinks they are all fascinating.
This spring, I have begun returning to the lake on quiet weekdays. I clamber down a sharp bank, try to
avoid the poison ivy, and photograph the swans. There is peace just in watching them.
Whether or not they are descendants of the swans I first saw, they are on the water this year, an
elegant pair with four cygnets between them. Over a decade, the swans have taught me a great lesson:
No matter how cold the winter, how harsh life may be, spring always comes. Seasons cycle, and we
grow. Children grow up, and adults grow older. But, if we listen to the stillness in our hearts, we grow
inwardly, where it matters the most. Life and love not only endure, they triumph.
And yes, as I drive along, I still sing a half-remembered refrain in the car, “Come on let’s crawl (gotta
crawl, gotta crawl) to the hungry bug ball (to the ball, to the ball). And a happy time we’ll have there,
one and all at the hungry bug ball.”
