KNOWING JESSE

A mother’s passion-filled memoir of her fight to give her disabled son the life he deserved.

In 1987, screenwriter and actress Leone gave birth to Jesse, a premature boy whose prognosis was poor and future uncertain. He lived to be 17. Though a quadriplegic who suffered severe seizures and could not talk, Jesse loved to learn, think and communicate in other ways. At first glance, the memoir appears to be a mournful keen with spiritual overtones, but it turns out to be nothing of the kind. Love for her son and rage at those who did not see him as worthwhile permeate the narrative, which surprises with its humor and frankness. Jesse came home from the hospital to a small apartment in Hoboken, N.J., where Leone and her husband, actor Christ Cooper, soon discovered the difficulties of securing the required services for their disabled child. By the time Jesse was six, Cooper’s career was thriving, and they bought a house in Massachusetts, expecting that the situation would be better there. The second half of the memoir recounts Leone’s attempts to ensure that Jesse received the schooling entitled to him by the law. The couple was blessed with a succession of loving caretakers for Jesse at home, but Leone was frustrated by the failings of the public school’s special-education program. A self-described “rageaholic,” she battled the system, at first alone, then as part of a successful campaign with other angry parents of disabled children. Leone’s character sketches are deft and humorous, and included throughout are selections of Jesse’s poetry and photographs of the boy with family and friends, attesting to a life that, though short and often painful, was filled with accomplishment, love and joy.

Heartwarming.