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.