This reading group guide for Jesse: A Mother''s Story includes an introduction, discussion questions, ideas for enhancing your book club, and a Q&A with author Marianne Leone . The suggested questions are intended to help your reading group find new and interesting angles and topics for your discussion. We hope that these ideas will enrich your conversation and increase your enjoyment of the book. INTRODUCTION Jesse Cooper was an honor-roll student who loved to windsurf and write poetry. He also had severe cerebral palsy and was quadriplegic, unable to speak, and wracked by seizures. He died suddenly at age seventeen. In Jesse: A Mother''s Story, Jesse''s mother, Marianne Leone, shows readers that despite challenges along the way--including her struggle to integrate Jesse into the public school system--life with Jesse was more rich and joyful than anyone could have imagined. In his short lifetime, Jesse lived life to the fullest and brought unbelievable happiness to everyone he met.
Jesse is a heartbreaking, spirited, and poignant memoir, in which Marianne writes passionately about her family''s journey--the hope, challenges, grief, and love. TOPICS & QUESTIONS FOR DISCUSSION 1. Jesse is filled with humorous scenes, such as when Jesse kicks a monk who is trying to bless him. Discuss the tone of the book and how Marianne was able to infuse her story with moments of levity and hope. Were you surprised by the comical moments in the book? 2. From a struggling actress in Hell''s Kitchen to a disability advocate in small-town Massachusetts, Marianne becomes a very different person by the end of the book. How does she change throughout the course of Jesse''s life? Can her transformation be solely attributed to Jesse, or are there other factors at work? What did Jesse teach Marianne? 3. How do Jesse''s poems provide insight into his thought process and his perspective of the world? How did he perceive himself and the challenges he faced? Which of his poems affected you the most? Which one provided the most insight into who he was as a person? 4.
At Jesse''s memorial service, Marianne says that "parents of disabled children are ''touched by the Divine.''" (pg. 11) What do you think it means to be "touched by the Divine?" How have you been "touched by the Divine?" 5. Jesse writes, "Courage is like one ant trying to cross a roaring stream. It may seem impossible but you have to try." (pg. 135) How does Jesse demonstrate courage throughout his life? How does Marianne encourage this character trait in her son, and how does she embody this spirit herself? 6. When Jesse is in first grade, Marianne exchanges daily notes and journals with his teacher.
Despite her growing frustration, she says, "I continued to write cheerleadery rah-rah responses to Jesse''s teacher''s misspelled messages." (pg. 177) Why does Marianne initially alter her personality when dealing with Jesse''s teachers and aides? 7. Why is Jesse''s school so resistant to Marianne''s efforts to improve Jesse''s experience in the classroom? Were you frustrated by the difficulties Jesse faced in school? 8. Who does Marianne turn to in difficult times? How does she create and maintain her support system? Who are the people in your life that you turn to for support? 9. Marianne is a self-described "rageaholic," and even experiences blackouts at times when she is extremely angry. What incites her rage the most? How does she use her rage to her advantage, and when does it hurt her? 10. Throughout Jesse''s life, several female caregivers enter the Cooper household and teach, tutor, and help Jesse.
Describe the bonds that form between Jesse and the women and between Marianne and the women. How do these women affect the family? 11. Despite the difficulty of parenting a child with disabilities and the physical separation that was often required for Chris''s acting jobs, Marianne and Chris''s marriage remains strong throughout the book. How is their relationship affected by Jesse''s disability? How do they handle the stresses that come along with fighting for their son''s right to attend school? 12. Marianne says that she "sees" Jesse in the strangest of places, from an old man praying in Naples to a hawk flying in the sky outside the hospital. When and how does Marianne see Jesse? Why does Jesse take the various forms that he does? 13. In Jesse''s last poem, he wrote, "The world is my book / I hear all its voices." (pg.
29) What do you think he meant by that? How does Jesse communicate with the world, and how does the world communicate with him? ENHANCE YOUR BOOK CLUB 1. Get involved! Host a charity event--bake sale, yard sale, or 5K run--and donate the money to a charity, like, www.cerebralpalsy.org, www.ucp.org, or find the parent-to-parent disability org in your state. You can also donate to the Jesse Cooper Foundation. Visit www.
marianneleonecooper.com for details. 2. Spend an afternoon volunteering with children who have disabilities or any other cause about which you feel passionately. Visit to www.volunteermatch.org, www.serve.
gov, or www.dosomething.org/volunteer to locate volunteer opportunities in your community. 3. Marianne becomes an advocate for Jesse and his right to attend school like any other child. Discuss a time in your life when you felt so passionately about something or someone that you were willing to do whatever it took to achieve your goal. 4. Although he often struggled to communicate verbally, Jesse''s writing is full of life.
His poems display a wealth of emotions and keen observations of the world around him. Write a poem about something you have struggled with in your life and share it with your group. A CONVERSATION WITH MARIANNE LEONE In the acknowledgments section, you talk a little about the writing process for Jesse . What made you decide to write the book? Was it difficult to share your story? Did you ever want to quit, and if so, what made you keep going? I wrote an essay for The Boston Globe about three months after Jesse died, and the book grew out of that essay. At the end of the essay I quoted Jesse''s first poem, "Inside/Outside" which had the lines "On the inside I speak," and "On the outside I give." In the closing lines of the essay, I wrote, "So I''ll walk on the inside and give on the outside. But I can''t be mute. I think Jess would understand that I have to give sorrow words.
" ''''The grief that does not speak whispers the o''erfraught heart and bids it break" (Shakespeare). Shakespeare gave voice to the human condition better than anyone. The pain of loss compels the writer to "give sorrow words" to deal with that pain. The only difficult part of sharing this story was the reliving of the battle to have Jesse included in his local public school. I felt again the despair and rage at the unfair way Jesse was treated, and anger at my own incompetence and slow learning curve in this brave new world of special education. What made me keep going was the desire to share with others the impact this nonverbal child had on so many people around him. Despite the agony of reliving his struggles, I also experienced the utter joy of Jesse''s company in writing this book and that helped me keep going. Can you describe the responses you have received from the book? Has anything surprised you? I have received scores of heartfelt letters both via snail mail and as e-mail comments on my blog at www.
marianneleonecooper .com. Many have been moved to enclose a donation to the Jesse Cooper Foundation. So many of the readers who wrote me (and they were mostly mothers) talked about snatching precious moments of time while waiting for a nurse to arrive or checking to see if their child was still breathing. They told me how much this book and Jesse''s story resonated with them. These letters moved me to tears and brought me instantly back to my own stolen minutes of writing time when I was acting and writing and being Jesse''s mom. I got a letter from a thirteen-year-old girl who went to Jesse''s school and whose teacher had directed the class to read a book about a person with a disability. She said she wished she could "hand the book to every person in the world so they could know about Jesse.
" More than one person described the book as a "love letter" to my son, which made me happy. The educators and therapists who wrote gave me hope, especially the ones who said they would never look at a child like Jesse in the same way again. And there were even funny letters, like the one that told me my book should come with a warning label: "Caution! My son''s a charmer and you will be in love with him for the rest of your life." From your upbringing in the Catholic church to your decision to teach Jesse about all the world''s religions, can you talk about your faith and the role it played in your life with Jesse? Jesse.