Marianne Leone - Knowing Jesse: A Mothers Story of Grief, Grace, and Everyday Bliss

Advance Praise for Knowing Jesse

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

Knowing Jesse is an incandescent memoir, glowing with a mothers love for her disabled son and fueled by her righteous anger. With fierce honesty and unexpected humor, Marianne Leone illuminates the challenges of Jesses life, the courage with which he faced them, and the joy he brought those lucky enough to know him.

Tom Perrotta, author of The Abstinence Teacher and Little Children

I was stunned. Stunned and moved to tears. I thought I knew something of what parents with disabled kids go through. This book made me realize that I dont have a clue. At its core, this book is about unwavering courage, unbounded love, and perseverance in the face of adversity. It grabs you by the lapels and takes you on a wondrous, inspiring journey. I couldnt put it down and I now carry Jesses journey in my heart.

William H. Macy

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 boybrave, 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

Knowing Jesse is an important book for any parent to read. No one should have to struggle the way the Coopers did for their beloved son. Their story forces us 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

Knowing Jesses title mentions grief and grace and everyday bliss. Yes, those elements are included. But thats a fraction of the fun. Yeahthats right. I said fun. As in funny. This book made me laugh and cry and then laugh again until I was crying with laughter. Tough, tenacious and fall-down funny: those words reflect the authors approach to life and the incredible talent of her magnificently smart and totally engaging son, Jesse. This kids journey is one of a kind and so is this book. Do yourself a favor: buy it, read it, and when you are doneread it again.

Denis Leary, author of Why We Suck and cocreator of Rescue Me

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. Knowing 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 it has an afterlife where spirit lies. With humor, guts, and grace, Knowing Jesse will carry you compellingly to yours!

Andre Dubus III, author of House of Sand and Fog

Angry and loving, bitter and funny and, above all, honest, the emotion in this book is too alive to think of it as a memoir.

John Sayles, writer and director of Lone Star and Amigo

Jesse was an extraordinary individual who packed ten lifetimes into seventeen years. He had a great intellect and could envision life beyond the challenges of disability with poetry, dreams, and very real desires. But perhaps his greatest gift was in the way he taught so many how to live with joy in the moment. Marianne puts the music from her sons heart into words. She brings us into her home, and wont let us go until we are inspired by the love her family shared.

Ross Lilley, Executive Director, AccesSportAmerica

With the gritty honesty of an outraged mother, Knowing Jesse tells of Mariannes familys pursuit of justice through hope, courage, and love. Knowing Jesse is a story that is familiar to every parent of a child with special needs who struggles with the challenges life places in the path of their childs living and being, and who knows it is worth it!

Rich Robison, Executive Director, Federation for Children with Special Needs

Knowing Jesse is wonderfully written, and is the legacy Jesse deserves. It is a gift to our community.... I hope Jesses legacy will be that people will not look away, but rather focus on people with CPsee their humanity and capacity for love, and allow them access to all that makes life worthwhile.

Mindy L. Aisen, MD, Medical Director, Cerebral Palsy International Research Foundation

Mariannes beautiful prose mirrors the beauty of her unconditional love for Jesse. Jesse comes alive in the pages of the book in a way that reveals his grace and intelligence. I came to know and appreciate Jesse for the wonderful kid that he was. I also came to know Marianne and her husband, Chris, not only as advocates for Jesse and their family but as role models for what parents should do to protect and love their children.

Michael Carroll, founder of Romanian Childrens Relief

Actress, author, and running Madonna Marianne Leone brings to the pages of Knowing Jesse what we strive for on the stage: truth, passion, humor, and soul that inhabits every moment.

Wynn Handman, cofounder and artistic director of The American Place Theatre

A mothers passion-filled memoir.... 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.... Leones character sketches are deft and humorous, and included throughout are selections of Jesses 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.

Kirkus Reviews

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Copyright 2010 by Marianne Leone

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First Simon & Schuster hardcover edition September 2010

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