cover image The Still Point of the Turning World

The Still Point of the Turning World

Emily Rapp. Penguin Press, $25.95 (200p) ISBN 978-1-59420-512-5

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.)