Marianne Leone's Knowing Jesse is a heartbreaking and moving novel about the too short life of her son. Though some might recognize the author's name, she is an actress known most recently for her work on The Soprano's, this memoir is by no means about her or her well known actor husband, Chris Cooper (The Bourne Identity, etc.).
This book is most definitely about the wonderful but all too short life of Jesse, her son, who is born ten weeks early and who, due to a medical episode, was left with cerebral palsy. He was quadriplegic and non-verbal and spent his seventeen years struggling with horrible seizures. But he is also fiercely smart and, with the right opportunities, capable.
The first half of this book is almost excruciating. Leone is understandably heartbroken. The chapters share her pain and sadness all too well. I like to read memoirs about people's challenges and growth...but I almost put the book down. It was all just a bit too depressing for me.
But, it was worth hanging on. The books segues seamlessly into a discussion of how Leone and her husband fought for their son's education. It is the 80's and inclusion is just a developing idea. She has moved her family from New York to the south shore of Massachusetts as she is told her son will have better opportunities there, but ends up facing a battle. Not everyone understands the concept of handi-capable, not even the Director of Special Ed in her town, who is heard making a comment about how funds are wasted on "these children" as they will offer society nothing. Seriously!! But this woman is a fighter! She teams up with other families in the area and forces the town to offer her child the education he deserves.
I am glad I read through my initial feelings. I really enjoy stories about education and schools and it was interesting reading about her battles through the system. This book was really very good and though Jesse passes away too quickly, as Leone says the only way to really find Jesse in this world without him is to "be present in the world" and to connect with others.
3/5- Good. Read it, have a good time and move on. Or not.
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