In her just-published memoir Knowing Jesse: A Mother’s Story of Grief, Grace, and Everyday Bliss, Marianne Leone writes eloquently about the courageous, accomplished and all-too-short life of her son, Jesse, whose severe cerebral palsy rendered him nonverbal and quadriplegic. Jesse died suddenly at 17, but not before riding a horse, windsurfing, making his school’s honor roll, writing haunting poetry and touching the lives of all who got to know him. Leone, an actress (The Sopranos) and wife of actor Chris Cooper (Adaptation, American Beauty), spoke to MORE about Jesse and her book.
MORE: Your memoir is fierce and inspiring but also very funny. Was it hard to strike the right balance of all those elements?
Marianne Leone: I’m glad you said funny, because I’m afraid that people will be terrified of the heart-breaking aspect of the book, and I want them to know that there’s just as much joy in it. I remember the line I wrote, about how if Chris and I were to appear on a TV show, the legend would read: “tragic parents of severely handicapped child.” And that’s not what it was like with Jesse. He was the kid who laughed first at the joke around the table. And I think that even though this is essentially a grief memoir, it was hard to repress my comedic side. Laughter is where I feel most comfortable.
There are many people you describe so vividly, Jesse’s caregivers and friends. . .
It’s amazing, the wonderful people Jesse drew to us. I just feel that there was something in him that drew people like that and also elevated them to be the best that they could be around him. His friend Kyle still swims with me every day. It’s very bittersweet to watch him growing up, you know. But his life will be different forever because of Jesse.
I was struck by the fact that kids Jesse met in school, even as young as seven, weren’t daunted by the fact that he was nonverbal. They seemed to understand him on a level that many adults just didn’t.
I really feel like if you give kids a chance, that’s where they’ll go. Now mind you, I used to go into the class and speak to the kids. Just to cover it I would say, “How many kids like to go to the movies?” And they’d all raise their hands. I’d say, “Jesse likes to go to the movies. How many kids like to. . . ?” You know, I would draw the parallels. And I would reassure them that what Jesse had was not something that would happen to them too.
The story that to me is the most important in the book is when Jesse went to Prague with us and kept a journal for his sixth-grade class, including how he couldn’t get up the escalator at Charles de Gaulle airport. It wasn’t wheelchair accessible; every elevator was out of commission. His teacher took that and said, “They want to hold the Olympics there. Now, who would you write to?” And she sent me the letters. Some were like, “Dear Mr. Bush, do you know what happened to my friend Jesse?” And there were others that said, “What about elderly people? What about people with little kids in strollers?” I thought, This is what community is. This is the understanding that we all bear responsibility for each other. If you boil it down to sound bites, it would be two T-shirts Jesse had: One said, Question Authority, and the other said, See the Kid, Not the Disability.
You describe your long, harrowing fight to get Jesse included in the regular school system in your Massachusetts town, with his own aide, because he was a very bright kid who just had special needs. What do you want to tell other parents of similar children?
I just want parents to understand that you are your child’s strongest advocate, no matter what—even if your child is able-bodied. I do feel it’s the "question authority" thing. I don’t mean that you have to go in with a chip on your shoulder and challenge everything. But you’re going to be at the forefront of advocacy for your child, and you do not have to accept someone else’s summation of who your kid is if you know different.