Recently, my five-year-old son started to organize impromptu plays in our living room. In December, he assembled and directed an adaptation of the Nutcracker in his kindergarten class. Now, he is working on adapting Sleeping Beauty. One evening our family gathered together as he constructed the set, an amalgamation of pink and blue play silks, desk chairs, or nearly anything he could find. He pulled costumes from his play baskets — crowns, tutus, swords, and capes. He cast himself as the knight and my daughter, who is two, as the princess. My husband played the prince as I beat the drum. When performance time arrived, my daughter, shy in the spotlight, squirmed and giggled as she pretended to sleep, then woke to jump into my husband’s arms as he kissed her cheek. I clapped and banged the drum.
I tell you this story because at the time, I had also been reading Emily Rapp’s new memoir, The Still Point of the Turning World, and while I sat with my children laughing and singing and banging on drums, Emily Rapp was at home caring for her son who was slowly dying from Tay-Sachs disease. As I embraced this lovely moment of creativity with my family, a deep empathy bubbled up from my stomach as I thought: Emily Rapp will never have a moment like this with her son. She will never build stages and act out plays with him because he won’t live to be three. I continued banging on the drum, brushing the grief aside to reside in that one moment of pure joy and imagination that wrapped itself around me and my family.
Emily Rapp, who also wrote the memoir Poster Child about growing up with a congenital birth defect in which most of her leg was amputated, is a professor of creative writing at the University of Art and Design in New Mexico. She wrote her new book after her nine-month-old son, Ronan, was diagnosed with Tay-Sachs, a rare and fatal genetic disease. As Rapp uncovers what the disease will do to her son — paralysis, loss of vision, the slow withdrawal from the world — she asks bigger questions about the nature of our lives that are provocative, thoughtful, and important. In this moving and deep meditation on grief, which is, in essence, an inquiry on how to live, Rapp explores central questions about life and death. How do you parent a dying child? What is the nature of luck? How to live when we all know we will die? How do we let go in the path of uncertainty?
Loving a child is an act of vulnerability in which everything could change at any moment. Life with my children would always be tenuous and fragile and short and for Rapp and her son, even more so. She writes, “This is a love story, which, like all great love stories, is ultimately a story of loss.” From the moment she begins, Rapp draws the reader into her heartbreaking narrative. She writes the hard truth: that we can never fully protect our children, but in the process of writing the hard truth, she also tries to teach us how to live, how to love, and how to let go. She writes, “I’d never experience with Ronan so much of what I’d been looking forward to as a mom…I was angry about the unfairness of that….”
Rapp’s book is a dedication to and celebration of Ronan’s life. As Rapp explains in the book, Ronan had “no map for his meaning,” and her task, beyond taking care of him, was to find and share his quiet narrative and to make his story known to the wider world. In one tender scene where Rapp and her son walk together on a favorite trail near her home, Rapp finds that together they exist in the “still place of the turning world” where only her fierce love exists. It is then that she lets go of luck, reason, and chance to live and love her son, who will die too soon. She writes, “Grief, I realized, is watery and trembling and always exists beneath the surface of real life, just a gentle touch and it’s spilling everywhere.” Rapp’s prose is clear and evocative, but it never wanders toward sentimentality. “The world was broken, and the three of us — Ronan, Rick, and I — were falling into its mouth.” She calls upon the experiences and stories of many writers to help tell her own—Mary Shelley, Pablo Neruda, and C. S. Lewis, among others. She writes of Ronan, “My plan was simple and yet impossible: to go with him as far as I could along this journey that we call life, to be with him as deeply as I could from moment to moment, and then to let him go.” This is more than a book about a dying child; instead it teaches us how to live fully in an uncertain world.
At times, Rapp’s tone is vitriolic (as it should be, I suppose) in that she is critical of others who offer compassion from the parenting circle of healthy children she no longer fits into. For instance, in reference to comments like, “I could never do what you do,” she writes, “These are, at their base, simpleminded, misguided, and, of course, quite rude remarks, not to mention shortsighted and stupid.” She could not plan for her son’s future because he would not have one, and her resultant anger made me want to throw the book across the room. I wanted to embrace her story, to live with it, to understand it, to empathize, and I felt like she didn’t want me to, or that I couldn’t. In regards to her grief, she writes, “People fully expected the weeping and gnashing of teeth, but they also expected the griever to get over it already. Grief makes people feel awkward,” so she finds comfort in other moms who have children with Tay-Sachs, the “dragon moms,” she calls them. As she opens sympathy cards from friends and others, she writes, “I chucked them straight away. I didn’t even look to see who sent them, and I didn’t care if this was cruel…. The era of being nice was over.” In her grief and pain, she has every right to feel this way, and any book that produces such a powerful reaction (I shut the book more than a few times) deserves attention.
As I finished Rapp’s book, I wept and thought, What’s going to be my grief, my loss? I can’t know — none of us can know — and it is useless to wonder. Rapp’s book drove me into despair for days upon finishing, but it tells the truth with emotional power and grace. It explores tough questions, questions we all must confront as human beings and as parents. It left me feeling chafed and vulnerable, and while at times, I wanted to put it away and not finish it, I couldn’t stop reading. Her grief, her story, her voice—all are fierce and raw. I came out a different person, a different mother, and even now, I can’t shake the tough questions she poses. As hard as it was to read the grief as it unfolded, I’m grateful to have read Ronan’s story, to know his life and for hearing, as Rapp has written, his silent world speak.