Jesse Cooper was an honor-roll student who loved to windsurf and write poetry. He also had severe cerebral palsy and was quadriplegic, unable to speak, and wracked by seizures. He died suddenly at age seventeen.
In fiercely honest, surprisingly funny, and sometimes heartbreaking prose, Jesse’s mother, Marianne Leone, chronicles her transformation by the remarkable life and untimely death of her child. An unforgettable memoir of joy, grief, and triumph. Jesse unlocks the secret of unconditional love and speaks to all families who strive to do right by their children.
“Like a master tightrope walker, Marianne Leone avoids any fall here into understandable sentimentality or self-pity. Instead, she has stepped nakedly into the larger human truths of her own story and given us back a life-sustaining feast. Jesse goes beyond a living portrait of this remarkable boy and his family; it explores the unbreakable blood ties between parents and children, that chosen thread between husbands and wives, and that sometimes hazardous web of other people called bureaucracy. At the heart of all this is a Sufi aphorism that speaks agelessly to the true nature of loss itself, that is has an afterlife where spirit lies. With humor, guts, and grace, Jesse will carry you compellingly to yours!”—Andre Dubus III, author of Townie and House of Sand and Fog
“An important book for any parent with a severely disabled child to read, and maybe an even more important one for the rest of us blessed with kids we think of as “normal.” No parent should ever have to struggle the way the Coopers did for their beloved son, not here or anywhere. Their story forces us to imagine ourselves in their shoes and to face the hard question of whose responsibility it is to speak for children who cannot speak for themselves.”—Richard Russo, author of That Old Cape Magic
“An incandescent memoir, glowing with a mother’s love for her disabled son, and fueled by her righteous anger at a system that failed time and time again to acknowledge his humanity. Marianne Leone tells her family’s story with fierce honesty and unexpected humor, illuminating not only the challenges of Jesse’s life, but the courage with which he faced them, and the joy he brought to the people who were lucky enough to know him.”—Tom Perrotta, author of The Abstinence Teacher and Little Children
“This book made me laugh and cry and then laugh again until I was crying with laughter. . . . This kid’s journey is one of a kind and so is this book. Do yourself a favor: buy it, read it, and when you are done—read it again.”—Dennis Leary, author of Why We Suck and creator of the FX series Rescue me
“A mother’s passion-filled memoir of her fight to give her disabled son the life he deserved. . . . 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. . . . 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.”—Kirkus Reviews
In Jesse, Marianne Leone uses an Italian word–Stendhalismo–which describes being overcome by the harmony and beauty all around you. Stendhal, Leone explains, became short of breath and nearly fainted at the beauty of Florence. Well, Stendhalismo describes the experience of reading this book too. As I got to know Marianne, her husband Chris, and their son Jesse I was overwhelmed by the love and joy and beauty I found there. This book will break your heart. This book will make you angry. It will make you laugh and cry and cheer. But mostly, this book will lift you up.”—Ann Hood, author of Comfort and The Knitting Circle
“In prose so full of life and love and rage and grace it will fill the room where you read this book, Marianne Leone tells the story of her son Jesse, a boy with cerebral palsy, a beautiful boy—brave, smart, funny and determined to live his life as part of society, not segregated from it. Armed with a ferocious love, his parents set out to make sure Jesse has that chance. Here is a book in which sorrow and joy are found in the same breath, where ignorance is revealed to be indistinguishable from cruelty, but where grace abounds and justice finally triumphs. This is a love story, and a family story, and at its heart is the boy. Jesse died young, but he lives in these pages. I am grateful to have met him here.”—Abigail Thomas, author of A Three Dog Life