Marianne Leone, a screenwriter, essayist, and actress known for her work as Joanne Moltisanti on The Sopranos, and her husband, Academy Award winning actor Chris Cooper, used to joke that if they ever appeared on a daytime talk show, the legend on the bottom of the screen would say “Tragic parents of a severely handicapped child.” But that’s not how it was. Jesse was the knot that tied his family together, the key that unlocked the gift of unconditional love.
In her fiercely honest, sometimes heartbreaking, and always inspiring memoir, Knowing Jesse: A Mother’s Story Of Grief, Grace, And Everyday Bliss, Leone chronicles her transformation by the remarkable life of her son. Jesse had severe cerebral palsy and was quadriplegic, unable to speak, and wracked by seizures; he was also an honor-roll student who loved to windsurf and write poetry.
None of his triumphs came easily. Leone knew that the light of intelligence burned through Jesse’s entire being, but strangers, doctors, therapists, and educators dismissed Jesse as a lost cause. But, she writes, her family was not looking for miracles: they were looking for grace. “See the child, not the disability” became her mantra, and she locked horns with those who would prefer to ignore her son, or worse, tell him he “don’t belong.” For years she battled doctors who treated her son with indifference, searched for caretakers who could connect across a nonverbal divide, and fought to make school districts live up to the law and accommodate her son’s special needs.
Leone also shares her delight when, finally triumphing over a hostile school district, she sees Jesse make friends and excel in his public school classroom. Then, after Jesse’s sudden death at age seventeen, Leone writes, “Everything in my universe was blotted out.” Throughout Jesse’s life, and now, after his death, Leone walks the line between happiness and pain as the outside world relentlessly intrudes.
With warmth and great humor, Leone speaks candidly to families who strive to do right by their children, and explores a mother’s perseverance, grief, and abiding, unconditional love. But Jesse’s story is also the story of millions of American families who are affected by physical and mental disabilities—families who need to know that their children can live life to the fullest, despite physical limitations or societal prejudice. Nothing is impossible. Or, as Jesse wrote in his Latin homework, “amor vincit Omnia”—love conquers all.
A Foundation has been set up in Jesse's name, which supports inclusion and adapted sports for disabled people through the Federation for Children with Special Needs and AccesSportAmerica. The foundation also supports disabled orphans in Romania through the Romanian Children's Relief Fund.
Leone has also appeared in films by John Sayles, Nancy Savoca and Martin Scorsese. Her essays and op-ed pieces on a variety of topics have appeared in the Boston Globe. She and Cooper live on a tidal river in the South Shore of Massachusetts with their two rescue dogs, Lucky and Frenchy.
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