"Knowing Jesse" is Leone's heartbreaking, uplifting, occasionally overheated, but never, ever saccharine account of three brave people fighting for their humanity. Although the book resembles "Death Be Not Proud," John Gunther's 1949 classic about his teenage son's death, it's not solely about dying young. While it covers some of the same ground as "The Year of Magical Thinking," Joan Didion's 2006 meditation on the loss of her husband, John Gregory Dunne, it also concerns itself with more than grief. At its core, "Knowing Jesse" is about the Coopers' battle to establish in the minds of others who their child actually was and who, with help, he ultimately could become. Their objective never changed: to prove that Jesse was something far greater than a crumpled, spastic little boy.
Almost immediately, "Team Cooper," as Leone termed herself, her husband and an ever-changing group of caregivers, discovered that it was up against something more than just Jesse's disability. When the infant boy's neonatologist advised a risky operation to insert a brain shunt by blithely stating, "Oh, Mrs. Cooper, it's only a piece of plumbing," Leone realized that this medical authority figure did not recognize her son as an individual. Enraged, she sought a second opinion — the procedure was unnecessary.
Leone, a Massachusetts native who frequently contributes essays to the Boston Globe, tells the story of her growing assertiveness with great honesty. By conceding early on that she must overcome anxieties born of her Catholic upbringing ("I had been raised up in a religion based on fear, subjugation, humiliation, and lurid images of torture and martyrdom"), she exposes her own vulnerabilities. By admitting that she was once prejudiced against the handicapped ("In my cruel and complacent youth, I made fun of people who talked funny"), she avoids self-righteousness. Leone also successfully employs a daring rhetorical tactic. By beginning "Knowing Jesse" with her son's death, she makes it plain that this is a tale in which every second will count.
The Coopers' battle took on a thrilling urgency when, as Jesse neared 3, they began to perceive that he was mentally intact. For all of his physical shortcomings, he had an attentive demeanor and expressive features. Although a neurologist informed the couple that their son would never be "intellectually normal," they disagreed. Vowed Leone: "He will learn.... Of this I am certain."
At 4, Jesse discovered how to say "yes" by making a kissing sound and "no" by clicking his tongue. At 7, he attended a computer class and technicians attached electrodes to his eyelids that enabled him to move a cursor on a screen: He beat his father in a video game. Soon thereafter, the Coopers adapted a Mac laptop to take advantage of their son's sole physical skill — he could grasp a toggle with one hand. With the aid of a special program that made it possible for him to scan the alphabet one letter at a time, Jesse learned to read. At 10, he wrote his first poem. Soon, he was studying Latin. "If we had stopped trying to teach Jesse," Leone writes, "the neurologist's dire prophecy would have been fulfilled. But the neurologist was right about one thing: Jesse wasn't 'intellectually normal.' He was intellectually superior."
Thanks to the Coopers' determination, Jesse enjoyed a fairly typical adolescence. He attended the prom, albeit in a wheelchair. He took up wind surfing. Like every teen, he acted out and got banished to his room. Through it all, however, Leone was filled with dread. The seizures wouldn't stop. She never doubted that one day she would find her boy dead in his bed. Yet she and her husband never ceased to fight for him.
"To behold Jesse," Leone asserts in a particularly beautiful passage, "to see the light shining forth from his helpless body was to understand that his helplessness gave him his greatest power — the power to teach others by drawing out the best in them."
Several months before his death, in his final school theme, Jesse observed: "Courage is an attribute that allows you to face difficulty and danger with firmness and without fear. Atticus Finch said on page 112 of 'To Kill a Mockingbird' that courage is 'knowing you're licked before you begin but you begin anyway and you see it through no matter what.' "
Jesse was not only describing himself but everyone else on Team Cooper. In her fine and moving book, Leone enables us to know a boy who was well worth knowing.
Oney is the author of "And the Dead Shall Rise."