Jesse: A Mother's Story of Grief, Grace, and Everyday Bliss

Jesse: A Mother's Story of Grief, Grace, and Everyday Bliss

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by Marianne Leone
     
 

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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

Overview

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, Knowing Jesse unlocks the secret of unconditional love and speaks to all families who strive to do right by their children.

Editorial Reviews

From the Publisher
“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 it, Marianne Leone tells the story of her son, Jesse. Sorrow and joy are found in the same breath, but grace abounds and justice triumphs.”
—Abigail Thomas, author of A Three Dog Life

Knowing Jesse is an incandescent memoir, glowing with a mother’s love for her disabled son and fueled by her righteous anger. With fierce honesty and unexpected humor, Marianne Leone illuminates the challenges of Jesse’s 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

Knowing Jesse is an important book for any parent to read. The Coopers’ 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

“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

“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

Knowing Jesse's title mentions grief and grace and everyday bliss. Yes, those elements are included. But that’s a fraction of the fun. Yeah—that's right. I said fun. As in funny. 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.”
—Denis Leary, author of Why We Suck and co-creator of Rescue Me

“I was stunned. Stunned and moved to tears. 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 couldn’t put it down and I now carry Jesse’s journey in my heart.”
—William H. Macy

Product Details

ISBN-13:
9781439184165
Publisher:
Simon & Schuster
Publication date:
09/07/2010
Sold by:
SIMON & SCHUSTER
Format:
NOOK Book
Pages:
272
Sales rank:
809,563
File size:
5 MB

Read an Excerpt


Prologue

All summer and fall I had been troubled by a dream I couldn’t interpret. My mother, who had died that spring, appeared as a silent sentinel dressed in white, seated next to a cafÉ table covered by snowy linen on which one small candle burned. Like a sphinx, her face was inscrutable but not disapproving. She was eerily still and seemed drained of the passions that inflamed her in life—the hardwired resentments, the black humor that saw death lurking around every corner and met it with a sneer, a laugh, and a vaffunculo.

The candle tipped over and fell behind the table. I reached for it and the candle disappeared, falling through a hole in the floor that magically revealed the candle lighting millions of others. The light grew into a conflagration that did not harm but instead inspired awe in its magnitude, intensifying until the entire dream universe became a white-hot void.

The dream finally made sense on the morning of January 3, 2005, when I went in to wake up my son for school and found him dead in his bed. Everything in my universe was blotted out.

Journal, spring 1989: “Someday I know I’ll find him dead in his bed.”

How did I know this? I just knew. When I saw him lying there like a sleeping prince, his beautiful full lips tinged blue, I knew. I knew when I pulled up his eyelids and saw his huge brown eyes fixed and staring, I knew when I screamed for his father and watched him give CPR. And when he said, “Call nine-one-one,” I knew. My son was wearing his T-shirt that read “Anime fiammagente”—souls aflame.

Jesse’s small flame had joined the many.

The fates lobbed a medicine ball at my chest that January morning, and it’s still lodged there, covering my heart in the spot where Jesse used to rest his head. It’s hard and unyielding, too, the way his head would jackhammer against my chest during a seizure. Jesse had severe cerebral palsy and could not speak. He was also a straight-A student, a sophomore at his public high school who wrote poetry on his computer, aced every one of his Latin tests, and windsurfed in the summer.

That many people only saw Jesse’s disabilities adds another dimension to grief, a surreal aspect to the isolation of my new altered state. Their perception is “It’s for the best,” or “He’s free now, and so are you.” But I would have gladly hefted Jesse’s undersized frame for as long as my own body could tolerate the weight, and beyond, into my own infirm old age. My husband, Chris, and I used to joke that if we were to appear on an afternoon talk show, the legend at the bottom of the TV screen would read, “Tragic parents of severely handicapped child.” But that’s not how it was.

“My family is fancy . . .”
—Jesse Cooper

© 2010 Marianne Leone

Meet the Author

Marianne Leone is an actress who appeared in The Sopranos, a screenwriter, and an essayist published in The Boston Globe. She lives in Massachusetts with her husband, actor Chris Cooper, and two rescue dogs.

The Jesse Cooper Foundation funds inclusion and adapted sports for children with special needs, and supports disabled orphans in Romania.

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Jesse: A Mother's Story 3.9 out of 5 based on 0 ratings. 7 reviews.
Anonymous More than 1 year ago
This book is just what I needed. I had a brother with Cerebal Palsy and he was the joy of my family lives. We lost him from a seziure a few weeks ago. I was so lost and did not understand why this happened. When I read Knowing Jesse this book reminded me of my brother and what my family went through. I thought we were the only one who had gone through this type of situation. Marianne writes this book with passion. I gave this book to my Mother and she could not stop talking about it and she said this book could be her life. My mother went through the same difficulties as Marianne. Thank You Marianne for helping me through our hard times.
Anonymous More than 1 year ago
This book was suggesred to me by my daughters occupational therapist! My daughter has a rare syndrome called macrocephaly capillary malformation. And much like Jesse she too faces seizures, mobility and non verbal behaviors such as hand flapping, outburt etc! This book for me gives a honest account of the first time you meet the disability head on, it really is fight or flight. This book gave me the words i needed to see in print. Marianne gives great narration to the struggle, the calm and tge love between mother and child. The book takes you for a ride tgat if you are currently not on bybthe second chapter you will. You fall in love with them. And you wish you has a cregiver like they did with Brandy. Overall a wonderful book tgat i read when my hope has left the building.
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