Prologue

All summer and fall I had been troubled by a dream I couldn’t interpret. My mother, who had died that spring, appeared as a silent sentinel dressed in white, seated next to a cafÉ table covered by snowy linen on which one small candle burned. Like a sphinx, her face was inscrutable but not disapproving. She was eerily still and seemed drained of the passions that inflamed her in life—the hardwired resentments, the black humor that saw death lurking around every corner and met it with a sneer, a laugh, and a vaffunculo.

The candle tipped over and fell behind the table. I reached for it and the candle disappeared, falling through a hole in the floor that magically revealed the candle lighting millions of others. The light grew into a conflagration that did not harm but instead inspired awe in its magnitude, intensifying until the entire dream universe became a white-hot void.

The dream finally made sense on the morning of January 3, 2005, when I went in to wake up my son for school and found him dead in his bed. Everything in my universe was blotted out.

Journal, spring 1989: “Someday I know I’ll find him dead in his bed.”

How did I know this? I just knew. When I saw him lying there like a sleeping prince, his beautiful full lips tinged blue, I knew. I knew when I pulled up his eyelids and saw his huge brown eyes fixed and staring, I knew when I screamed for his father and watched him give CPR. And when he said, “Call nine-one-one,” I knew. My son was wearing his T-shirt that read “Anime fiammagente”—souls aflame.

Jesse’s small flame had joined the many.

The fates lobbed a medicine ball at my chest that January morning, and it’s still lodged there, covering my heart in the spot where Jesse used to rest his head. It’s hard and unyielding, too, the way his head would jackhammer against my chest during a seizure. Jesse had severe cerebral palsy and could not speak. He was also a straight-A student, a sophomore at his public high school who wrote poetry on his computer, aced every one of his Latin tests, and windsurfed in the summer.

That many people only saw Jesse’s disabilities adds another dimension to grief, a surreal aspect to the isolation of my new altered state. Their perception is “It’s for the best,” or “He’s free now, and so are you.” But I would have gladly hefted Jesse’s undersized frame for as long as my own body could tolerate the weight, and beyond, into my own infirm old age. My husband, Chris, and I used to joke that if we were to appear on an afternoon talk show, the legend at the bottom of the TV screen would read, “Tragic parents of severely handicapped child.” But that’s not how it was.

“My family is fancy . . .”
—Jesse Cooper

© 2010 Marianne Leone