I started Jesse, A Mother’s Story twice.

The stark beauty of this memoir hit me the moment I began. Marianne Leone’s narrative, written with an unrelenting immediacy, yanked me into her world.

Leone’s son Jesse owned me from his first moment on the page. By the end of the prologue, Leone had so engaged me that I put it aside.

Because I knew how it would end. 

 Because I was a coward.

 I’d already fallen in love with the family but needed to build courage to continue.

Sometime later, I began reading again. Thank God I couldn’t stop this time because Jesse, A Mother’s Story,gave me one of the greatest gifts of my reading life. I learned that you could go on. You could have the utmost love and then the worst possible pain, and though you never lose the grief, you could still find that love. That connection between mother and child can continue to envelop you in your dreams and soul. Perhaps that’s what keeps you from total madness.

Jesse, A Mother’s Story is written by a mother who loves her son with ferocity—the ferocity that parents of disabled children need more than other parents. Jesse Cooper had severe cerebral palsy, was unable to speak, and was quadriplegic and wracked by severe seizures. He was also stunningly bright, funny, and loving. His parents, the actors Marianne Leone and Chris Cooper, needed both rage and ferocious love if Jesse’s light was to come out in full.

Leone writes so close that I felt the cigarette she held as she “paced the floor of our apartment above the store, smoking, crying and feeling helpless . . . Our session with the physical therapist was a disaster. She roughly stripped Jesse of his outside clothes, and he began to howl. Well, I can’t work with him if he’s going to cry all the time, she said.

Jesse was failing physical therapy. Or was the therapist failing Jesse? To watch your child handled roughly is to have a piece of your soul crumple into ash.

Marianne Leone brought together a band of parents and professionals to fight the system, a battle that continues serving children in the region where Jesse went to school, ensuring her son and others could be fully integrated into the school system, get the services they needed, and write essays poems, like this one written by Jesse:

Courage is like one ant trying to cross a roaring stream.

It may seem impossible but you have to try.

Jesse and his parents lived not only with candor and courage but with edgy humor and street-fighting reality. Jesse, A Mother’s Story is not a worshipful account of saints but of parents who reach into every pocket of strength they can access to help their child live fully in this world. Leone’s narrative pulled me like a page-turning novel. I needed to know what would happen, especially when, despite promises made and a law guaranteeing Jesse’s inclusion in a regular classroom, the school system fails not just by sins of omission but by dedicated commission.

Leone’s realization of these sins after sending Jesse’s loved and trusted home aide, Brandy, to observe his school aide and teacher in his classroom radicalizes her. The school aide, believing that Brandy, like them, hates her job, says in front of a non-verbal but totally cognizant Jesse, “he doesn’t belong here, and between you and me, Brandy, we both know where he’s gonna end up.” Jesse’s teacher talks in front of him as though he were invisible, delineating “the life expectancy of a CP kid,” speaking with faux sympathy, criticizing Leone, who, according to this cruel aide, needs to “learn to let go.”

 Thus, is set in motion a battle that ends up including the entire school district as Leone joins with a newly formed group of parents of special needs children:

In the last few minutes, I had joined the berserker tribe of mothers, those who go into battle without any armor but rage. Mad as dogs, fierce as wolves, they fight to the death.

We who are unaffected might turn away from the Leone-Cooper story, from all stories like Jesse’s. We might want to protect our denial, but oh what a loss that will be. Jesse. A Mother’s Story has a plethora of happy endings before the ultimate sorrow.

That is what this book taught me: Sorrow doesn’t erase joy. We can hold both.

I, probably like you, am a constant reader. Sometimes, I forget titles even as I turn the last page. Some books are appetizers, some momentary candy, and some are solid meals. The moment I finished Jesse, A Mother’s Story, I wanted to reread it. This book is an account of the miracle of how we manage to rise further than we ever knew we could.

Leone does not sing her own praises in this book, but I can. She showed me a way. Mothers can find a way to lift a truck off their child even during moments of exhaustion and exasperation, even as they doubt they are up for the task. This book lives on my read again and again shelf. Jesse, A Mother’s Story was not a book about a disabled child but a story of being able to move on after a tsunami has hit your heart.

If you are a parent, then you, like me, fear losing your child more than anything in the world. Screw up your courage and buy this book. Not only can she write like crazy, but damn, Leone is as funny as she is courageous and loving. Jesse was blessed to have her for his mother.

I started Jesse, A Mother’s Story twice.

The stark beauty of this memoir hit me the moment I began. Marianne Leone’s narrative, written with an unrelenting immediacy, yanked me into her world.

Leone’s son Jesse owned me from his first moment on the page. By the end of the prologue, Leone had so engaged me that I put it aside.

Because I knew how it would end.
Because I was a coward.
I’d already fallen in love with the family and I needed to build up courage to continue.

Sometime later, I began reading again. This time, thank God, I couldn’t stop because Jesse, A Mother’s Story,gave me one of the greatest gifts of my reading life. I learned that you could go on. You could have the utmost love and then the worst possible pain, and though you never lose the grief, you could still find that love. That connection between mother and child can continue to envelop you in your dreams and soul. Perhaps that is what keeps you from total madness.

Jesse, A Mother’s Story is written by a mother who loves her son with ferocity—the ferocity that parents of disabled children need more than other parents. Jesse Cooper had severe cerebral palsy, was unable to speak, and was quadriplegic and wracked by severe seizures. He was also stunningly bright, funny, and loving.  His parents, the actors Marianne Leone and Chris Cooper needed both rage and ferocious love if Jesse’s light was to come out in full.

Leone writes so close that I felt the cigarette she held as she “paced the floor of our apartment above the store, smoking, crying and feeling helpless . . . Our session with the physical therapist was a disaster. She roughly stripped Jesse of his outside clothes, and he began to howl. Well, I can’t work with him if he’s going to cry all the time, she said.

Jesse was failing physical therapy. Or was the therapist failing Jesse? To watch your child handled roughly is to have a piece of your soul crumple into ash.

Marianne Leone brought together a band of parents and professionals to fight the system, a battle that continues serving children in the region where Jesse went to school, ensuring her son and others could be fully integrated into the school system, get the services they needed, and write essays poems, like this one written by Jesse:

Courage is like one ant trying to cross a roaring stream.

It may seem impossible but you have to try.

Jesse and his parents lived not only with candor and courage but with edgy humor and street-fighting reality. Jesse, A Mother’s Story is not a worshipful account of saints but of parents who reach into every pocket of strength they can access to help their child live fully in this world. Leone’s narrative pulled me like a page-turning novel. I needed to know what would happen, especially when, despite promises made and a law guaranteeing Jesse’s inclusion in a regular classroom, the school system fails not just by sins of omission but by dedicated commission.

Leone’s realization of these sins after sending Jesse’s loved and trusted home aide, Brandy, to observe his school aide and teacher in his classroom radicalizes her. The school aide, believing that Brandy, like them, hates her job, in front of a non-verbal but totally cognizant Jesse, says, “he doesn’t belong here, and between you and me, Brandy, we both know where he’s gonna end up.” Jesse’s teacher talks in front of him as though he were invisible, delineating “the life expectancy of a CP kid,” speaking with faux sympathy, criticizing Leone, who, according to this cruel aide, needs to “learn to let go.”

Thus, is set in motion a battle that ends up including the entire school district as Leone joins with  a newly formed group of parents of special needs children:

In the last few minutes, I had joined the berserker tribe of mothers, those who go into battle without any armor but rage. Mad as dogs, fierce as wolves, they fight to the death.

We who are unaffected might turn away from the Leone-Cooper story, from all stories like Jesse’s. We might want to protect our own denial, but oh, what a loss. Jesse. A Mother’s Story has a plethora of happy endings before the ultimate sorrow.

That is what this book taught me: Sorrow doesn’t erase joy. We can hold both.

I, probably like you, am a constant reader. Sometimes, I forget titles even as I turn the last page. Some books are appetizers, some momentary candy, and some are solid meals. The moment I finished Jesse, A Mother’s Story, I wanted to reread it. This book is an account of how we manage to rise further than we ever knew we could.

Leone does not sing her own praises in this book, but I can. She showed me a way. Mothers, even during moments of exhaustion and exasperation, even as they doubt they are up for the task, can find a way to lift that off their child. This book lives on my read again and again shelf. Jesse, A Mother’s Story was not a book of a disabled child but a story of being able to move on after a tsunami has hit your heart.

If you are a parent, then you, like me, fear losing your child more than anything in the world. Screw up your courage and buy this book. Not only can she write like crazy, but damn, Leone is as funny as she is courageous and loving. Jesse was blessed to have her for his mother.

May we all pray to have that ferocious love when we most need it.