Like all mothers, Emily Rapp had ambitious
plans for her first and only child, Ronan. He would be smart, loyal,
physically fearless, and level-headed, but fun. He would be good at
crossword puzzles like his father. He would be an avid skier like his
mother. Rapp would speak to him in foreign languages and give him the
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.