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Publisher: Penguin Books$11.47The Still Point of the Turning World (Large Print Hardcover)
Publisher: Thorndike Press$31.99
But all of these plans changed when Ronan was diagnosed at nine months old with Tay-Sachs disease, a rare and always-fatal degenerative disorder. Ronan was not expected to live beyond the age of three; he would be permanently stalled at a developmental level of six months. Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting. They would have to learn to live with their child in the moment; to find happiness in the midst of sorrow; to parent without a future.
"The Still Point of the Turning World" is the story of a mother's journey through grief and beyond it. Rapp's response to her son's diagnosis was a belief that she needed to "make my world big"--to make sense of her family's situation through art, literature, philosophy, theology and myth. Drawing on a broad range of thinkers and writers, from C.S. Lewis to Sylvia Plath, Hegel to Mary Shelley's "Frankenstein," Rapp learns what wisdom there is to be gained from parenting a terminally ill child. In luminous, exquisitely moving prose she re-examines our most fundamental assumptions about what it means to be a good parent, to be a success, and to live a meaningful life.
- ISBN-13: 9781594205125
- ISBN-10: 1594205124
- Publisher: Penguin Press
- Publish Date: March 2013
- Page Count: 260
- Reading Level: Ages 18-UP
Publishers Weekly® Reviews
- Reviewed in: Publishers Weekly, page .
- Review Date: 2012-11-05
- Reviewer: Staff
Rapp's next work after her memoir about her childhood disability and foot amputation (Poster Child) delineates a bracing, heartbreaking countdown in the life of her terminally ill son. At age nine months, Ronan was diagnosed with Tay-Sachs, a rare, degenerative disease, involving the lack of an enzyme, that is always fatal, striking the parents as a complete surprise, despite the author's having been tested during standard prenatal screening. An affliction most prevalent among Ashkenazi Jews, Tay-Sachs actually has more than a hundred mutations. Ronan's "death sentence" was for Rapp and her husband, Rick, living in Santa Fe, a time of grief, reckoning, and learning how to live, and her elegant, restrained work flows with reflections and excerpts from writers and poets like Mary Shelley, Pablo Neruda, and Sylvia Plath, as well as supporters who helped her during the difficult unraveling of her son's condition. Writing about Ronan allowed her to claim the sorrow and truly look at her son the way he was. Her narrative does not follow Ronan as far as his death, but gleans lessons from Buddhism and elsewhere in order that Rapp could "walk through this fire without being consumed by it." Unflinching and unsentimental, Rapp's work lends a useful, compassionate, healing message for suffering parents and caregivers. Agent, Dorian Karchmar, William Morris Endeavor (Mar.)
The love in a child's life, however brief
In her memoir, The Still Point of the Turning World, Emily Rapp steps into the very center of the horror all parents dread: the death of a child. She doesn’t document her son Ronan’s death from Tay-Sachs disease symptom by symptom, but she maps the progress of her own sorrow as she seeks to accept his fate. As she cares for a baby who is slowly, inexorably dying, she finds counsel in the words of poets, writers, spiritual leaders and philosophers who have faced the unthinkable and survived more or less intact.
Rapp is truthful, which makes her story both wrenching and refreshing to read. She shares no platitudes or explanations—just the raw emotions of parents whose child would, as Rapp describes, “gradually regress into a vegetative state within the span of one year. . . . This slow fade would progress to his likely death before the age of three.” She faces the big questions head on: Will she meet Ronan in the afterlife? Does his small life matter at all? But she also faces the mundane struggles: Should she and her husband prolong his life with a feeding tube or other interventions? Does it matter what they feed him? What kind of therapy will keep him comfortable?
Grief, Rapp learns, is neither predictable nor logical. Seeking answers from C.S. Lewis, Emily Dickinson, T.S. Eliot, as well as Buddhism, Christianity and other sources, she recognizes that her own intensely personal experience is no less important for being hers alone. She sees that Ronan himself is precious, a whole person whom she loves, not for his future achievements, but for who he is now. Rapp writes, “We made him, we loved him, end of story. . . . I reminded myself that unconditional love asks nothing back; being Ronan’s mom was my giant, painful opportunity to learn this. What I was being asked to do felt both entirely instinctive and completely impossible . . . to love my child without limits or expectations.”
Emily Rapp’s willingness to share these philosophical, emotional and practical issues makes this book particularly helpful for parents facing similar struggles. However, all parents would benefit from the reminder to love their children for who they are, not who we hope they will become.