What does it mean to be a success? To be a good parent? To live a meaningful life? Emily Rapp thought she knew the answers when she was pregnant with her first child. But everything changed when nine-month-old Ronan was diagnosed with Tay-Sachs disease, a rare and always-fatal degenerative disorder. He was not expected to live beyond the age of three. Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting and to learn to parent without a future.
Even before the book’s publication, Rapp set the Internet ablaze with her New York Times op-ed piece about parenting a terminally ill child. An immediate bestseller, The Still Point of the Turning World is Rapp’s memorial to her lost son and an inspiring and exquisitely moving reminder to love and live in the moment.
At 9 months old, author Emily Rapp's first son, Ronan, was diagnosed with terminal Tay-Sachs disease, a rare, always fatal condition that has no known cure or treatment and has a typical life expectancy of three years or less. On top of not expecting to live past the age of 3, Rapp was also informed that her son would likely not mentally develop beyond 6 months old. In this memoir, Rapp shares how her grief process unfolded, how she came to terms with the news that she would outlive her son and there was nothing she was able to do about it.
No one is immune to disease or sickness or any other catastrophic event, and we are all just a disease, a decade, an accident away from disability. So we're afraid. Confronted suddenly with an experience interpreted as tragic and world-ending, people feel helpless and stumble over their words. The death of a baby seems to go against nature, against the advertisements on television about the miracle of birth and the unadulterated joys of parenting, against or hopeful delusion that being good people might keep chaos at bay. But chaos finds everyone, or as the philosopher Ziusudra mourned in 2700 BCE: "Fate is a wet bank, my friends. Sooner or later it will make you slip."
Rapp describes her daily thought processes as she considered how to give her son the best quality of life with the brief time he had on this earth -- the painful acceptance of life milestones she would never be able to witness him reaching, having to navigate through end-of-life choices for him, the brutal meetings with doctors who were unable to give her much hope for a better outcome. She's honest about the highs and lows of her grief process, the times she felt at peace with things, other times she found herself trying to make spiritual bargains for her son's life, attempts at alternative medicine healing such as acupuncture & Reiki treatments or taking him to the village of Chimayo in Santa Fe, New Mexico to try the "healing mud".
When I sat writing with Ronan on the couch, there existed inside this helpless, frantic sadness exquisite moments of pristine happiness and an almost-perfect peace. I propped him against my chest and circled my arms around him to get to the keyboard on my laptop. I stared at him and tickled him and kissed him and wished that my words, anything, could save him. But no, writing would not save Ronan. But, I thought, it might save me.
Being a writer and literature professor, she also describes wanting to find escape and healing in books, but feeling guilty for wanting to read when her son was dying and would not live enough to find a love of books himself. Still, she tried, and does mention books she did find helpful. Not of the self-help variety, as you might think, but instead finding solace in various classics and ancient myths collections. The ancient myths she said she especially found perfect when she couldn't get her mind on anything else, because they didn't illustrate real-life situations like most modern literature, but were written hundreds of years ago by others wanting to develop answers to difficult life questions. Rapp also talks about re-reading Frankenstein by Mary Shelley and finding a renewed connection with the monster, between his disfigurement and her own struggles as a child amputee after a congenital birth defect required the amputation of her left foot.
Having answered the question, "What's wrong with you?" for much of my life, I could scarcely imagine such acceptance, but I wished it for my son, and although I could not heal him, I could insist that he be accepted for who and how he was. Ronan lived in the world held by people who loved him and fed him and talked with him and met him on his own terms. When he died, he will have been fully loved from his first breath to his last and then after. That full uncompromising love, powerful and sometimes painful, was perhaps the only miracle worth believing in.
Even not being a parent myself, I did find Rapp's writing engaging and honest. As you might expect, this one is a pretty heavy read. How can it not be, right? There was part of me that kept hoping for Rapp to put more focus on the little bit of good she was able to take from the tragedy. She does mention these moments but much of this memoir does put emphasis on her pain and anger at the unfairness of life. There was also a bit I found a little offensive where she mentions teaching a Gifted and Talented course but adds "I don't believe in that terminology because it almost always meant rich kids. Nothing more." Having been in a G & T program during my own school years, this definitely wasn't my experience. In fact, in our program, I only remember maybe 2-3 kids out of 20 or so who could claim to come from privileged families. Shame for her her experience with gifted kids wasn't better. But that was the one thing that did grate on me a bit throughout the whole book -- no doubt Rapp can write, but man, her bitterness (while understandable under the circumstances) made for a draining reading experience.
above: the inspiration for Rapp's title
Note To Readers: In this book, Rapp does drop a spoiler for the short story "A Perfect Day For Bananafish" by J.D. Salinger. Just a heads up ;-)