How do you live with such a death sentence? In "The Still Point of the Turning World," Rapp describes forcing herself to think deeply about the unthinkable and adjust to a new reality as she steels herself for inevitable, devastating loss. Although her memoir encompasses grief, its focus is on dread, "the worst kind of fear, marked, as it is, by an absence of hope."
In a culture that puts a premium on ambition, self-improvement and the pursuit of happiness, she wonders, "How do you parent without a future, knowing that you will lose your child, bit by torturous bit?"
Rapp rages and mourns, but as readers know from her spirited first memoir, "Poster Child" (2007), in which she unflinchingly chronicles the challenges of a congenital birth defect that led to the amputation of her left leg, she does not whine. She certainly has cause to bemoan her awful luck, especially given that her prenatal screening had included tests for Tay-Sachs, most prevalent among Ashkenazi Jews, even though she is not Jewish. (Her mutation was not covered by the tests, and her husband was also a carrier.)
Although it confronts every parent's worst nightmare, Rapp's book, in covering just the first nine months after Ronan's diagnosis but stopping well short of his death, is not a cathartic tear-jerker. The thing about dread is that it offers none of the release of flat-out mourning.
This isn't a book about picking up the pieces and soldiering on after the derangement that follows grievous loss — the subject of a growing body of literature that includes Joan Didion's "The Year of Magical Thinking," Joyce Carol Oates' "A Widow's Tale," Megan O'Rourke's "The Long Goodbye" and Roger Rosenblatt's "Making Toast."
In her memoir of losing her husband, Didion writes of "going to the literature" in times of trouble. Rapp too finds relevance, enlightenment and sometimes even solace in literature, especially in poetry, including lines by Emily Dickinson, Jane Kenyon, Seamus Heaney and Sylvia Plath. For Rapp, "grief management" involves a good deal of intellectualizing her feelings through literary analysis, as well as a search for spiritual sustenance through visits to a hospice for animals and a four-day "Being With Dying" Zen retreat.
Writing is clearly an essential tool for dealing with "thoughts that put me right at the thinning edge of sanity." But her memoir is also an indication that this self-proclaimed reformed "ambition addict" hasn't eschewed all aspirations: "Redescribing story, Ronan's story — his path, his myth — could blaze new pathways of understanding not only for me but for others."
Although Rapp avoids sentimentality, her radiant book is steeped in deep feelings. In an especially gorgeous passage she describes walking along the arroyo path near their Santa Fe home wearing Ronan against her chest: "I stood and listened to his breath and mine. I felt a momentary flash of peace, a great still pause. T.S. Eliot's 'still point of the turning world,' and of course this terribly tender love, and I thought, This is all I have to give, and I tried with all of my strength to pass that feeling into Ronan, and then I thought, Remember this."
Readers nursing terminal patients of any age can find encouragement in Rapp's savored "still point." Her determination to envelop her son in love, protect him from as much suffering as possible, and then let him go is a protocol as applicable to an Alzheimer's patient as to a sick child.
To point out repetitions and tangled verb tenses in a memoir that cuts so deeply seems beside the point. In fact, Rapp's sometimes convoluted tenses highlight the challenge of trying to stay in the present while looking to a future without her son in it: "When he died, he will have been fully loved from his first breath to his last and then after."
Her thanks in the Acknowledgments to Ronan's father, "who loved Ronan the way all fathers should love their sons"— not "who has loved" but "loved" — makes us wonder whether Ronan had already died. An Internet search revealed two sad facts: Ronan died on Feb. 15, 2013, just a month shy of his third birthday and three weeks before this heartbreaking book's publication. And: His parents' marriage predeceased him.
The Still Point of the Turning World
By Emily Rapp
Penguin Press: 260 pages; $25.95