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

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More About This Book

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.

Product Details

  • ISBN-13: 9781439183922
  • Publisher: Simon & Schuster
  • Publication date: 9/7/2010
  • Pages: 254
  • Sales rank: 210,527
  • Product dimensions: 5.60 (w) x 8.30 (h) x 1.10 (d)

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.

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

Customer Reviews

Average Rating 4
( 8 )

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Sort by: Showing all of 8 Customer Reviews

  • Posted November 8, 2010

    Do not miss this one!

    When I saw that there was one customer review and it was one star, I knew I had to write a review... Eleven years ago my sister lost her 8 year old son to seizures complicated by his CP. She was a single mother and our family was very involved in helping with his care whenever we could. Obviously, the topic grabbed me immediately. I've almost finished the book, but must make sure I have a box of tissues and some comfort food nearby. One never gets over the loss of a child -- they only get used to it. As a result, there are times of grief that we go through. Grief can be lonely -- and unless you've actually "been there" it's hard to understand why someone is still feeling this way after such a long time. Ms. Leone has shown me that we are not alone. In fact, I came here tonight to have a copy sent to my sister. What has been striking for me has been that there are times when I am reading this and I can hear my sister saying the EXACT same words. Words that are sometimes hard to say. Feelings that are sometimes hard to share. In short, she shares the profoundly intimate journey of a mother just wanting to do the best for her son against gray people feeding her impossibilities and grim odds. For me, this is a story of moving through (not past) our grief and challenges and not forgetting the joyful blessing of knowing someone like Jesse. I think this story is for a varied audience -- for those who do not understand the challenges of raising a child with disability, for those who are struggling with those challenges themselves, and even for those who are finding it hard to put their feet on the floor because of grief.

    1 out of 2 people found this review helpful.

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  • Anonymous

    Posted January 15, 2012

    Always in my table

    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.

    Was this review helpful? Yes  NoThank you for your feedback.   Report this reviewThank you, this review has been flagged.

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    Posted June 6, 2011

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    Posted October 14, 2010

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    Posted November 22, 2011

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