Q: When did Jesse die and how old was he?
Jesse was seventeen when he died, suddenly of SUDEP, Sudden Unexplained Death from Epilepsy in 2005. We found him in his bed the morning after what had been a totally typical day.
Q: Why did you write Jesse: A Mother’s Story and how long did it take?
I wrote the book to celebrate Jesse’s life and somehow process the grief that accompanied his death. The book grew from an essay published in the Boston Globe three months after Jesse died. It took about a year and a half to write the book which comes out in paperback on April 5th.
Q: What do you hope people take away from Jesse’s story?
I hope people will see the person, not the disability when they encounter differently abled people. I hope educators will presume competence. I hope parents will know that they are their child’s strongest advocates. I hope people will read Jesse’s poems and see the luminous soul within.
Q: Jesse’s story is very powerful and raw. Did you find it healing to write this book, and has it eased your grief?
I found healing by spending so many hours close to Jesse by reliving his life while writing this book. But I also relived pain and anger when writing about our struggles to include Jesse in school. Grief is like a sniper that takes you out when you least expect it. After six years, the pain is no longer physical, a fact that surprised me. But when you lose a child, grief is a life-long companion.
Q: Describe Jesse for me. What do you remember most about your son?
Jesse was physically beautiful, but his light came from within. He had huge, saintlike brown eyes, a strong straight nose and a curvy lipped, lush mouth. He had fine, straight-brown hair with crazy, adorable cowlicks. His skin was olive, with a golden undertone. He had a wry sense of humor and was always the first one to get the joke at the dinner table. Jesse was extremely social and adored parties and travel. He had eclectic music tastes and of course, loved movies.
He participated in adapted windsurfing and adored speed in any form, which included the wild rides at Universal Studios in L.A. He had a low voice, and when I remember him, I think of his deep chuckle and caressing his beautiful skin and running my hands through his hair, which Jesse loved.
Q: What do you miss most about Jesse?
I miss his physical presence with a visceral longing. I miss his curious mind and sense of humor. I miss taking care of him and fighting for him and how he made me grow spiritually through unconditional love. I miss my teacher.
Q: What did Jesse teach you?
Jesse taught me to look within, to see spirit. It was the greatest gift I have ever received.
Q: How are you different today because you were Jesse’s mom?
Jesse taught me to be unafraid, which was extremely liberating. I believe that I was always socially conscious, but now I am more so. I also learned about priorities through Jesse, for which I am very grateful.
Q: Did your training as an actress help you in any way as you juggled the various demands required by parenting Jesse?
All actors are students of psychology and in that way, I guess my training helped. Although I was never able to assume a character that would help me get through the battles to get Jess his basic civil rights. Unless you could call being a feral warrior beast a character, which is what I became!
Q: How did having a child with special needs impact your professional career?
My acting career was basically put on hold after the first few years of Jesse’s life. There was no way I could be on the road and be Jesse’s mother. My husband was away a lot performing in films and we couldn’t both be away. Chris was getting more parts, making more money, and it was a practical decision. In addition to acting, I had always written, and I just concentrated more on writing when Jess was young. I could do that at home and I only needed to fly to L.A. on rare occasions. While not produced, I have sold several screenplays. When Jess was 11 or 12 , I got an offer to audition for The Sopranos. We had a really great caregiver then and I couldn’t pass up that opportunity. I do not regret putting my acting career on hold at all.
Q: How did Jesse’s special needs and his death impact your marriage?
I’ve been married for 28 years to a man who embodies kindness, generosity and love. Chris loved Jesse as fiercely as I did. His tempermant is the polar opposite of mine. I’m hyper, have a big mouth and I hate authority. Chris is quiet, focused and respectful. So I knew we would grieve differently and that on those days when I could see a glimmer of comfort, he might be in the depths.
Q: Losing a child is every parent’s worst nightmare. How have you survived? What words can you share with other parents facing such loss?
I have only just barely survived! About a year after Jesse died, I grew a huge cancerous tumor the size of Jesse at his birth, which I thought of as grief made tangible. I am okay today, health-wise. I work hard at joy now, because when it comes, there is always the shadow of loss. But joy does return, as does laughter and appreciation of life’s physical consolations: seeing the first crocus, tasting a wonderful meal, physical pleasure. But this appreciation of worldly pleasure is a tightrope upon which you are always balancing. I try to honor Jesse’s spirit by remembering his pleasures, and not succumbing to despair, because Jesse never did.
Q: How are you doing with your loss today, and how do you continue to honor Jesse’s life, and your own?
We try to honor Jesse’s life with charities in his honor. That includes the Jesse Advocacy Fund at the Federation for Children with Special Needs in Massachusetts, which provides low income/English as a second language families with advocates to fight for educational inclusion. We also give a small scholarship every year at Jesse’s former high school called the Jesse Cooper Give Back to Society Scholarship, we support AccesSportAmerica, the organization which provided adapted windsurfing, and we help Romanian orphans with disabilities.
As for how I’m doing with the loss today–that’s a good question because it is day by day. Some days there’s a stone on my heart and the longing imbues every act of the day. Other days I can celebrate the sun and swimming and my own creative endeavors with Jess as a companion in spirit. But his presence is always, always there.
Q: What’s the best advice you can offer other parents struggling with the demands of children with special needs? How can they help their children achieve their full potential, too?
Initially, I found the parent-to-parent organizations in the states of New Jersey (SPAN) and Massachusetts, where I live, to be great resources for information and parent empowerment. To be in a community of other parents is wonderful, and today, the internet affords those opportunities, too. It’s a valuable resource I didn’t have in Jesse’s early years.
I also think it’s important to design curriculum to fit your child. Every child is different. For instance, we didn’t want Jess in school for the full five-hour day. He went for two and a half hours a day and then had three hours one-on-one with a tutor. This allowed him to get out of his wheelchair and stretch tight limbs, have a snack, etc. Those hours at school were important for his social life.
When Jess was two, I got him a tee shirt that said “Question Authority”, which I find important. For example, if we hadn’t questioned the neurologist when he told us that Jess would “never be intellectually normal,” when he was only four, my son would have become the self-fulfilling prophecy of that neurologist.
Q: Any new projects to report?
I have two new projects: I’m adapting a book I optioned about WWII female war correspondents into a project that my agent hopes to sell as a miniseries. I’m also writing fiction, (a first), a comedic coming-of-age novel about a little girl who wants to be a saint. I went to Catholic school for twelve years and I love writing comedy.
Q: Anything else you would like to add about Jesse and your book?
I hope Jesse’s story helps other families in the same struggle, although I know that every family is different.
Learn more about ‘Jesse: A Mother’s Story’ and its author, Marianne Leone Cooper, at her website and on the author pages at Simon & Schuster and Amazon.
Special Note: A Foundation has been set up in Jesse’s name, which supports inclusion and adapted sports for those with disabilities through the Federation for Children with Special Needs and AccesSportAmerica. The foundation also supports orphans with special needs in Rumania through the Rumanian Children’s Relief Fund.
Photos and book cover courtesy of Marianne Leone. Used with permission.