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 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 envelope you in your dreams and soul. Perhaps that's what keeps you from total madness.
Jesse, A Mother's Story is a written by a mother who loves her son with ferocity -- the ferocity parents of disabled children need more than others' 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, 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 and 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 realizations of these sins -- after sending Jesse's wonderful home aide, Brandy, to observe Jesse's school aide and teacher in his classroom -- radicalizes her. Thinking that Brandy hates her job, as obviously they do, the aide, in front of a non-verbal, but totally cognizant Jesse, says, "He don'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, about the "life-expectancy of a CP kid," speaking with faux-sympathy, though in truth with criticism of Leone, about how Leone needs to "learn to let go."
Thus is set in motion a battle that ends up including the entire school district and a newly formed group of parents of special needs children, beginning with Leone's thoughts:
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's 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, some solid meals. The moment I finished Jesse, A Mother's Story I wanted to read it again. 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 through moments of exhaustion, exasperation, even as they doubt they are up for the task, can find the way to lift that truck 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.
Jesse, A Mother's Story releases in paperback April 5. 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.