Customer Reviews

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

5 star:		(20)
4 star:		(2)
3 star:		(0)
2 star:		(0)
1 star:		(0)

 

 

I could not put this book down! Marianne is a force in the name of her child. You feel their pain along their journey with Jesse but at the same time their joy in having him in their lives. He was an extremely smart human being who fought for everything his whole, short life. All he needed were people to believe in him and he got that ten fold from his parents. Their undeniable connection to Jesse is awe-inspiring.

Reading Marianne Leone's book, one gets a sense that she is an absolute force of nature. Writing from her heart in this deeply moving memoir, Marianne conveys a jumble of intensely felt emotions: sadness and anger co-exist but are far outweighed by the joy, love and pride she feels for Jesse, her brain-damaged son.

Marianne, an actress who is married to actor Chris Cooper, gave birth to Jesse at 30 weeks of pregnancy. On the Jesse's third day of life, he suffered a massive cerebral hemorrhage. He developed seizures, and as he grew, severe cerebral palsy; he remained nonverbal. This led many in the "helping professions" to assume he was an "idiot", to write him off, and even to suggest that his parents institutionalize him.

Marianne has harsh words for the medical profession. She describes one neurologist, who announced that Jesse would never be intellectually normal, as "an ice-cold genius who didn't know the basics of human compassion. He murdered the futures of brain-damaged children every day by making absurd hubristic pronouncements... If we had believed him and stopped trying to teach Jesse new things, the neurologist's dire prophecy would have been fulfilled." Marianne's response: "As far as I was concerned, our son was brilliant and we would raise him that way." In the process of raising Jesse, Marianne was a "vigilant, feral ... mother grizzly (who rose) to towering monster heights" to protect and advocate for her child. She fought every step of the way to ensure that Jesse received appropriate education, and that he was mainstreamed. She and Chris took Jesse everywhere with them, including him in their rich, full lives, all the while wondering where all the other disabled children and their parents were.

Once Jesse got an adapted computer set-up, Marianne's belief in her son was vindicated when his intelligence was tested and found to be in the 99th percentile. He loved to write, especially poetry, and he speaks to the reader through writings Marianne has excerpted. "The most important lesson I can teach is to see people for what they can do and not for what they cannot do," he declared in a sixth-grade autobiography.

Jesse was plagued with seizures throughout his life. As Marianne searched for a doctor who could relieve them, she came to realize that no neurologist would be able to "regenerate Jesse's damaged brain cells." Having heard numerous "worst-case scenarios and gloomy predictions (that) foster(ed) a sense of helplessness ... compounded by anxiety and depression," Marianne hoped to "at least find one who could show us some mercy and who had the moral strength to see Jesse as human." Fortunately, she did find some doctors who were able to see beyond Jesse's disabilities to connect with the talented, loving and caring boy he was on the inside.

Ultimately Jesse's seizure disorder led to his sudden death and plunged his parents deep into grief. However, out of that wellspring of grief, Marianne has given readers many gifts: for parents of disabled children, a message that they must be their child's greatest advocates; for care-giving professionals, a dictum to recognize and respond first and foremost to the humanity and spirit of our patients; and for all, a portrait of what it means to love passionately and unconditionally.

Marianne Leone's undying love for her son drips and soars from the pages of this book. It will wrap itself around your heart and never let go. Like Jesse, It will illuminate some of the darkest reaches of life and somehow color them with unconditional love and fearless beauty that most are never cognizant of. More than anything, It is about Jesse Cooper's courageous impact on the world and what he gave to everyone around him. After reading this book, you will truly know Jesse, and feel blessed for being taken on his journey.

What an amazing book to experience. I say "experience" and not read as each page touches your heart and introduces you personally to a family and thier amazing Jesse whose story will cause you to never look at physical challenges the same way again. This is a must read for any family who has been touched by a physical disability and a strong message to all to NEVER GIVE UP in what can be accomplished. May God bless Jesse and his remarkable family!

This book is more about Jesse's Mother, a strong-willed woman determined to ensure her severely disabled child is able to get the proper education promised under law. She pulls no punches in her "war" against the school system and her inner thoughts of those who stood in her way. I was impressed with her honesty, even when it didn't always put her in the best light. I would have liked to get a little more insight into the family dynamics of this situation...particularly, how her husband played a role and what he felt during this time...he seems to be very much in the background during the entire book...and maybe that was actually the case in life.

I recently read an article in my local paper regarding Marianne Leone and her book and being the mother of a special needs child I immediately purchased the kindle version of this book. I spend countless hours in therapy office waiting rooms and read this book and laughed, cried and felt empowered after reading this incredibly heartfelt book by Marianne Leone. I couldn't believe her tenacity and downright gut wrenching love for her son as he struggled to fight the challenges of his physical issues - to show everyone he was smarter than most around him in the school system - and showed more emotional love and awareness than most young people his age I have met. What an unbelievable young adult, Jesse Cooper was. It's so sad that his life was cut short by his physical affliction - but his spirit, memory and joyfulness live on in his Mom and Dad. They are great examples of what parents of special needs children should aspire to be. I see a lot of apathy and not wanting to fight for your children - and also just "accepting the crumbs the school gives" because you think that's all you're entitled to. FIGHT! I am heading to an IEP meeting for my 5 year old son next week and Marianne's book has given me the "fire lit under my butt" I need to make sure my son receives the education he is damn well legally entitled to. Thank you Marianne (and Chris) for sharing your story - it is helping a lot of Moms and Dads fight the good fight :) - Kim from Braintree, MA

this is an awesome book cant wait to finish it. My child has Duchenne Muscular dystrophy and love reading books and how to get thru the grief for when he is gone

This book was well written, I actually read it in one night and then handed to my friend the next morning to read. She, too, found the book impossible to put down. From the first page, the author grabs your heart and doesn't let go. You will laugh, cry, and cheer while you read this beautifully written story about the highs and lows of having a child with a disability. I highly recommend it.

First of all, I gave this book 5 stars because that was the most that Amazon allows. Knowing Jesse is not a book that you review. By telling us about her son's life and untimely death, Marianne Leone has opened up her heart with all of its love, pain, anger, hope, and joy for the rest of us to know. You don't review that kind of openness and courage: you applaud it. Her honesty is so unbelievably refreshing. I am so sorry that Jesse had cerebral palsy and that he died so young, but Marianne shows us how Jesse lived his life to the fullest and how much he was loved. She also teaches us as parents that our job is to help fight for our children and their needs even if it forces us out of our own comfort zone. It's so good to know that in the land of "The Real Housewives" that there are Moms and Dads like Marianne Leone and Chris Cooper out there.

Knowing Jesse is a beautifully written, brutally honest and tender account of the author's life with her son, Jesse. Marianne allows us to look in the window, and share in the experience of raising and loving a child with a severe physical disability. There is joy and laughter and hope throughout the book, as well as anger, frustration and the inevitable grief. The journey is a complex one, cushioned and sustained by Jesse himself - a boy full of love and lessons for us all. Though unable to speak, he has left a legacy in his poetry and the people he touched along the way. If you are able to hear Marianne speak about her book, don't miss it. Parents, teachers and care providers will devour this book. If you are someone who knows little about a family's life with disabilities, do yourself a favor, and sit down at the table with Jesse, Marianne and Chris, and listen in. You will be the better for it.