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

by Marianne Leone

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.

Genres: Memoir, Nonfiction, Biography, Medical, Audiobook, Relationships, Parenting

Audio CD

First published September 7, 2010

About the author

Marianne Leone is an actress, screenwriter and essayist. She had a recurring role on HBO's "Sopranos" as Joanne Moltisanti, Christopher's (Michael Imperioli's) mother. She 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 is married to Chris Cooper, an academy-award winning actor and was Jesse Cooper's mother for seventeen years. After his death in 2005, her essay on grief was published in the Boston Globe ("He Was Our Touchstone".) Her memoir grew out of that essay.

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 Rumania through the Rumanian Children's Relief Fund.

Marianne lives on a tidal river in the South Shore of Massachusetts with her husband and two rescue dogs, Lucky and Frenchy.

Reviews

[Brandy · Rating 5 out of 5]

Not only do I cherish this beautiful story, I spent 11 years with jesse and his entire family. He was my teacher of unconditional love,facing fear and embracing myself. I carry part of his life and spirit in my heart, in my soul forever. My love to his family

[Diana Renn · Rating 5 out of 5]

This book gave new meaning to the word "gripping." I'll preface this by saying it's the first book I read on an e-reader; I just bought a nook. I'd already heard raves about Marianne Leone's moving tribute to her late son Jesse Cooper, what it's like to raise a child with cerebral palsy, and her efforts to advocate for his education in the public schools. I'd also heard she was a lovely writer. I looked at some free sample pages to try out my new nook, and I immediately bought the book. I couldn't put it down. I read late into the night. In the morning, I had what I believe is nook carpal tunnel syndrome from gripping the device. I'm serious. This memoir is one you want to hold close and not put down. It also makes you want to not let go of your children or other loved ones. Without sentimentality, Leone writes a compelling portrait of her son's first eighteen years, before his death from an apparent seizure. I came away feeling I knew this family, as well as their extended family of caregivers, and had a new understanding of people with physical disabilities and the fierce work their families do to advocate for their children. And the writing is gorgeous. This is by no means a typical memoir of parenting or of grief. It left me breathless. Recommend!

[Jane Humen · Rating 5 out of 5]

Rather than being a pity party, this memoir encourages the exact opposite - that we start seeing disabled people as the human beings they are. As a person with cerebral palsy, I was initially hesitant in picking up this book, wary that it might eventually give way to what I dread - an able-bodied person talking about disability without actually having a clue about its intricacies, encouraging people to pity us in the process.

I was pleasantly surprised that this book defied my fears and instead left me with the thought that if there's anyone left in this world who is a good ally to disabled people, who understands not just how to talk to us but how to talk *about* us, Marianne is definitely one of the few people I'd feel comfortable placing in that category. I'm glad she had the courage to advocate for Jesse and share his story. I feel as though Jesse's experiences mirror my own in many ways, and that's part of the reason I find it hard to put into words how much I appreciate this book. It has served to remind me that I'm not alone in dealing with some of the hardest parts of having CP - not the disability itself, but the discrimination and pity I'm so often met with. That reminder is one I've needed for years.

[Beth · Rating 5 out of 5]

Recommended by Melissa McEwan at Shakesville. I was interested partially because of my connection with people with serious disabilities, including someone in my family, and partially because I'm a big fan of Jesse's dad, the actor Chris Cooper. And having read this book, I'm now a big admirer of his mom, the author. I certainly related to her stories of frustration with medical professionals, school professionals, and general ignorant people in the world. Her stories and descriptions and emotional responses will be familiar to anyone with a disability or anyone who loves someone with a disability. The power of her story lies in her care to portray her son as a full person--no stereotypical "he was an angel/genius/perfect/supercrip" here. She loved her son and saw amazing things in him that many others didn't, but she didn't pretend he wasn't truly human as well. He was clearly an amazing kid with amazing parents. Leone has written a powerful story without falling into cliches. Bravo.

[Melissa · Rating 4 out of 5]

Marianne Leone's son, Jesse, is born early and has a brain bleed that results in cerebral palsy. She tells her story through stories--little glimpses into her life as the mother of a severely disabled child, the struggles, the lessons, etc. The book is sprinkled with photos and Jesse's poetry, which makes the book and the stories even more real. It does not, however, EVER read as a pity party. I was nervous when I started this book, assuming I'd spend my time reading it bawling. But I didn't cry once....she's actually pretty funny. I like this woman a lot.

[Casey · Rating 4 out of 5]

I gave this book four stars because I was moved by the story of little Jesse Cooper so much that it was hard to put it down. My heart is soft for those who have to rely on others to help them through life. And I get so angry when people try to treat them as if they're stupid or don't comprehend love, emotions, good, or bad. The story took off for me right at the beginning and kept me going till the very end.

Her story is powerful and compelling and I'm glad that Jesse was on this earth for as long as he was to touch and change the lives of those around him and beyond by his story.

[Lindsay · Rating 4 out of 5]

Marianne Leone is a firecracker. I hadn't really known her as an actress, nor did I know her husband, Chris Cooper. She was the keynote speaker at a conference that I attended earlier this year and I was struck by her raw emotions and the intense love she has for her son, Jesse. Her stories are heartbreaking, some hilarious, all very real and very easy to imagine myself in. A mother's love, a mother's grief, and the fight for equality for children with special needs.

[Neionie Pulido · Rating 5 out of 5]

This book mad me laugh, smile cry and lament with the author. It was so beautiful to see motherhood though the eyes of Mrs. Leone. It inspired me to become a special education teacher to do better for the other Jesses out there

[Megan Daily-Scott · Rating 4 out of 5]

I never read the flap or the cover on books I'm going to read and it was a wacky surprise when I did afterwards, there are recommendations from Tom Perotta, Andre Dubus II, Denis Leary... Not run of the mill for this type of book. Jesses' dad is Chris Cooper, and that's not plastered all over the outside either which is a relief. I thought I wasn't going to be able to stand reading this but I ended up riveted by it, the author really put herself out there without trying to gloss over anything, and the section that deals with the school system in Hoboken in the darker days of special ed is unbelievable.

[Kelly Kittel · Rating 4 out of 5]

Lovely, well-written story. Stumbled upon this when I heard Marianne read from Knitting Yarns in Duxbury, MA with Ann Hood, had no idea who she was (actress, The Sopranos, married to actor Chris Cooper) but loved her story and persona, looked her up and found this. Thank you for letting us know your son, Marianne. I loved your sense of humor. "I am aware that I sound like a refrigerator magnet." This beautiful book cuts to the heart of what it means to be a mom, a loving, warrior mom, and cuts straight to the heart of what life is truly about.

[Jane Deaux · Rating 4 out of 5]

See, this is why I love WRBH. I would never think to read this book on my own, but because it's on WRBH, I'm listening to it and enjoying it so much. It's really nice to hear stories and perspectives I'd never think to search out.

[Kristen · Rating 5 out of 5]

I give Thanks Marianne Leone for writing this memoir about her beautiful , creative and intelligent son. I found her story close to heart as I, myself, is living CP and work with children with disabilities who are kinda like Jesse non-verbal.

[Marie · Rating 5 out of 5]

Loved this book! Read my lengthy review here:
http://mariesbookgarden.blogspot.com/...

[Gabrielle · Rating 5 out of 5]

I met Jesse and have an abiding respect for his parents. Marianne Leone is someone I would write like if I had ferocious compassion and grace.

[Rachel · Rating 5 out of 5]

I can't say enough about this book. It is one of the most honest books I have read in quite some time. This one I can honestly recommend for parents who struggle with providing their children with the best education possible in spite of their limitations.

[Lexie · Rating 4 out of 5]

A friend gave this to me as a going away gift when I moved from my Special Education teaching job, saying that because of the impact I had on the students I worked with and the passion I had in doing so, she knew I would appreciate the fervor and intensity this mother had in advocating for her son. And she was right...I have so much respect for the mother in this memoir. Her son had cerebral palsy, and they were raising him in a time when advocacy for special needs was minimal and lacking.

It was both beautiful and heartbreaking to journey with her as she advocated for what he needed, despite opinions of others suggesting that she give up on him. I loved seeing her love come out in both fierce anger and laughter and joy.

I recommend this to parents, especially those with children who have higher needs. As a professional working in the field of special education, I had a great appreciation for this book, especially the aspects regarding schooling and SPED services, and would recommend it to anyone in a similar profession.

[Shalanna · Rating 4 out of 5]

I first heard about this book when I read Yes Please! by Amy Poehler. In Poehler's book she apologizes for something she did during a comedy sketch that she had regretted. She mentioned that Marianne Leone and Chris Cooper had contacted her about the sketch and how that had affected her. I wanted to know more about Chris and Marianne and Jesse, their son.

I listened to this book on audio and it was read by Marianne Leone. I love when author's read their own works! Hearing in her own voice about her son,Jesse Cooper; his birth, his diagnosis of cerebral palsy, being non-verbal, quadriplegic, and having devastating seizures was so powerful. I could feel her love, pain, heartache, happiness, and joy throughout the entire book.

As the mother of a child with special needs, I related to her on a deep level when she spoke of the struggle to gain educational rights for Jesse. I know what she went through and I ached as she described the treatment that Jesse received from the school district.

This is an open, honest, heart-felt account of raising, and then losing, yet not really losing, a son to a disability that may have robbed him of his life too early in the end, but did not stop him from living. Beautiful!

[Paula · Rating 4 out of 5]

Wow! What a roller coaster this family went on. I read this book because I am working on my SPED credentials for my local school district and I have to say that what the Coopers went through is absolutely ridiculous. It is terribly sad that it took legal action for them to get the results that they needed, which were NOT demanding in the least. I feel the better for having read this book and getting to know Jesse through his mother's eyes.

[Cortney · Rating 3 out of 5]

This is a heartbreakingly good book, sad yes, but good. A co-worker gave me this book, she worked with this family and has a chapter named after her. This is a mother's story about loving her son, who has cerebral palsy, through life and death. If you are a mother, you will probably relate to her unconditional love she had for her son and how much his life changed hers.

[Yhiggytchr · Rating 5 out of 5]

Probably the most inspiring book I have ever read....Marianne Leone's dedication to getting Jesse the education he was entitled to makes me want to fight harder for my girlie and also appreciate the times I have with her because you never know what tomorrow may bring....

[Jamie Schoffman · Rating 4 out of 5]

Great read here. A poignant and touching memoir of a child living with cerebral palsy, and the love that he inspired in his parents, his teachers, his friends, and anyone that ever met him. Keep a box of tissue handy...you will need it.

[Dayanara Ryelle · Rating 5 out of 5]

Perhaps the best review I could write is that I reached the acknowledgements and promptly said, "Shit, it's over?!"

Anything else would just be a pale imitation of my sentiments.

(Except maybe, "I haven't been this emotional since A Child Called It!")

[Sheri · Rating 5 out of 5]

A portrait of a mother as she cares for and learns from her disabled son. An amazingly powerful woman.

[Joan · Rating 4 out of 5]

Marianne Leone is brilliant and an amazing writer. Her story is inspiring.

[Tamra · Rating 4 out of 5]

Amazing story of love and the efforts of Jesse's family to help him fight a courageous battle to escape the limitations of his own body, and the discovery of who actually gains more in the end?

[Stephanie · Rating 3 out of 5]

Touching story of a mother's love for her child and the distance she will go to protect her child while allowing them to grow and experience the world.

[Gwen · Rating 3 out of 5]

Once I could get past that the parents were "famous" (actors living in New York), I could appreciate the love the mother had for her son with CP and how she fought for his care.

[Casey Button · Rating 5 out of 5]

I loved this book. I can relate to Marianne as a mother to a little boy with CP. I laughed, cried and could not put the book down.

[Jess Sweitzer · Rating 5 out of 5]

Loved it! Funny, heart wrenching, inspiring. A great read for anyone.

[Nicole Truly · Rating 5 out of 5]

Loved this book. Lovely and heartbreaking at the same time.