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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.
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About the Author
What People are Saying About This
It's hard to find words that do justice to Emily Rapp's THE STILL POINT OF THE TURNING WORLD. It's one of those rare books that you want to press into people's hands and simply say, "You must read this. You will thank me." At every turn, Rapp avoids the maudlin and the expected to get at very deep truths, sometimes painful and sometimes liberating and sometimes both. She looks for wisdom and comfort to a wide range of sources ranging from C.S. Lewis to Marilynne Robinson to Buddhist teaching. And she looks to her son. This is one family's story of living while facing death, but also an astonishingly generous work about recognizing the pain and grace that exist all around us. —Will Schwalbe, New York Times bestselling author of The End of Your Life Book Club
A writer writes; a mother mothers. When those passionate vocations merge in crisis, more than a memoir emerges. THE STILL POINT OF THE TURNING WORLD is a philosophical inquiry into the nature of faith, character, love, and dying. This book is Rapp's, and Ronan's, enduring gift of selves for the rest of us. —Antonya Nelson, author of Nothing Right and Some Fun
THE STILL POINT OF THE TURNING WORLD is about the smallest things and the biggest things, the ugliest things and the most beautiful things, the darkest things and the brightest things, but most of all it's about one very important thing: the way a woman loves a boy who will soon die. Emily Rapp didn't want to tell us this story. She had to. That necessity is evident in every word of this intelligent, ferocious, grace-filled, gritty, astonishing starlight of a book. —Cheryl Strayed, #1 New York Times bestselling author of Wild
Emily Rapp transforms her particular life situation —being a mother to her son Ronan who is dying of Tay-Sachs disease —into something universal, challenging readers to remember that love is all we ever have. Rapp's words will sear your heart and make you want to be a better parent, sister, partner, friend. Reading her book will change your life. —Sarah Sentilles, author of Breaking Up with God
"The Still Point of the Turning World is about the smallest things and the biggest things, the ugliest things and the most beautiful things, the darkest things and the brightest things, but most of all it’s about one very important thing: the way a woman loves a boy who will soon die. Emily Rapp didn’t want to tell us this story. She had to. That necessity is evident in every word of this intelligent, ferocious, grace-filled, gritty, astonishing starlight of a book."
—Cheryl Strayed, author of Wild
"It's hard to find words that do justice to Emily Rapp's The Still Point of the Turning World. It's one of those rare books that you want to press into people's hands and simply say, 'You must read this. You will thank me.' At every turn, Rapp avoids the maudlin and the expected to get at very deep truths, sometimes painful and sometimes liberating and sometimes both. She looks for wisdom and comfort to a wide range of sources ranging from C.S. Lewis to Marilynne Robinson to Buddhist teaching. And she looks to her son. This is one family's story of living while facing death, but also an astonishingly generous work about recognizing the pain and grace that exist all around us."
—Will Schwalbe, New York Times bestselling author of The End of Your Life Book Club
"Rapp has an emotional accessibility reminiscent of Wild author Cheryl Strayed; her unique experiences have a touch of the universal. She comes across as open, midthought. In her book, she wrestles with the ideas of luck and sentimentality and life and love and often circles back, unresolved. Despite being a former divinity student, she bypasses religion for literature, seeking meaning in poetry, myth and, especially, Frankenstein and its author, Mary Shelley... Her kind of parent? The dragon mother: powerful, sometimes terrifying, full of fire and magic."
—Carolyn Kellogg, Los Angeles Times, "Faces to Watch in 2013"
"A beautiful, searing exploration of the landscape of grief and a profound meditation on the meaning of life."
—Kirkus Reviews (starred review)
"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... Unflinching and unsentimental, Rapp's work lends a useful, compassionate, healing message for suffering parents and caregivers."
—Publishers Weekly (starred review)
"A writer writes; a mother mothers. When those passionate vocations merge in crisis, more than a memoir emerges. The Still Point of the Turning World is a philosophical inquiry into the nature of faith, character, love, and dying. This book is Rapp’s, and Ronan’s, enduring gift of selves for the rest of us."
—Antonya Nelson, author of Nothing Right and Some Fun
"This memoir of extraordinary tenderness and grace in the face of unimaginable loss is searingly beautiful in the way of a sacred text. Emily Rapp certainly didn't sign on to be our guide into the deepest crevasses of the human heart, but that is what she has become. Of course this is an undeniably sad book, but don't let that stop you. It is also one of the most powerfully alive books I have ever read. Every page shouts: This is what it is to love! To risk! To lose! To bear witness! An unforgettable moral and artistic triumph."
—Dani Shapiro, author of Devotion and Slow Motion
“Written with remarkable precision and restraint, Emily Rapp’s The Still Point of the Turning World takes us to the depths of grief, where almost against our will, heartbreak becomes beautiful.”
—Roger Rosenblatt, author of Making Toast and Kayak Morning
"Emily Rapp has written an intimate, compelling and often unexpectedly funny story that speaks to some of the most universal truths of being human. More than just a narrative, this is art, not to mention essential reading."
—Gary Shteyngart, author of Super Sad True Love Story
“Emily Rapp transforms her particular life situation—being a mother to her son Ronan who is dying of Tay-Sachs disease—into something universal, challenging readers to remember that love is all we ever have. Rapp's words will sear your heart and make you want to be a better parent, sister, partner, friend. Reading her book will change your life.”
—Sarah Sentilles, author of Breaking Up with God
“Emily Rapp vows not to avert her eyes, and she keeps her promise: to the son she is losing to a rare genetic disease, to her family, and to her readers. The result is a staggeringly brilliant and heartbreaking exploration of love, literature, life, death, and belief. Rapp’s language is as propulsive and beautiful as her grief is brutal, and her intellectual curiosity is insatiable. She asks the hardest questions any human being is ever forced to ask, about how we understand ourselves and our children, how we love and learn to let each other go. Reading Emily Rapp is like visiting a lush, complicated, inimitable planet. Fly there as fast as you can.”
—Rachel Dewoskin: author of Big Girl Small and Foreign Babes in Beijing
This memoir of extraordinary tenderness and grace in the face of unimaginable loss is searingly beautiful in the way of a sacred text. Emily Rapp certainly didn't sign on to be our guide into the deepest crevasses of the human heart, but that is what she has become. Of course this is an undeniably sad book, but don't let that stop you. It is also one of the most powerfully alive books I have ever read. Every page shouts: This is what it is to love! To risk! To lose!. To bear witness! An unforgettable moral and artistic triumph. —Dani Shapiro, New York Times bestselling author of Devotion and Slow Motion
I don't know anyone who writes with such clarity and grace about deep sadness and motherlove, about the beauty that is part of the hardest things in life: not transcendent, but quotidian. Rapp's voice is clear-eyed, love-filled, usefully angry, acute, thought-provoking, and tremendously moving. It tries to understand the incomprehensible, to delineate the unimaginable. This is an important book that will mean a great deal to many, many people. —Elizabeth McCracken, author of An Exact Replica of a Figment of My Imagination
Emily Rapp has written an intimate, compelling and often unexpectedly funny story that speaks to some of the most universal truths of being human. More than just a narrative, this is art, not to mention essential reading. —Gary Shteyngart, author of Super Sad True Love Story
Written with remarkable precision and restraint, Emily Rapp's THE STILL POINT OF THE TURNING WORLD takes us to the depths of grief, where almost against our will, heartbreak becomes beautiful. —Roger Rosenblatt, author of Making Toast and Kayak Morning
Emily Rapp vows not to avert her eyes, and she keeps her promise: to the son she is losing to a rare genetic disease, to her family, and to her readers. The result is a staggeringly brilliant and heartbreaking exploration of love, literature, life, death, and belief. Rapp's language is as propulsive and beautiful as her grief is brutal, and her intellectual curiosity is insatiable. She asks the hardest questions any human being is ever forced to ask, about how we understand ourselves and our children, how we love and learn to let each other go. Reading Emily Rapp is like visiting a lush, complicated, inimitable planet. Fly there as fast as you can. —Rachel Dewoskin author of Big Girl Small and Foreign Babes in Beijing
Reading Group Guide
“What can be learned from a dying baby?” Emily Rapp’s deeply moving memoir, The Still Point of the Turning World, asks this question as it recounts the life of her terminally ill son, Ronan. The answers it reveals are beautiful, devastating, and unexpected as Rapp gently leads us to understand that the lesson behind any death is the life that preceded it.
Rapp and her husband, Rick, were like any other first-time parents—mired in questions about organic baby food, weighing the benefits of breastfeeding versus formula, and contemplating how soon they should enroll their son in French lessons. But then they began noticing minor development delays that weren’t improving—at nine months old, Ronan had yet to crawl or begin speaking. Concerned, they took him to the pediatrician. The doctor gave them unthinkable news: Ronan had Tay-Sachs, a fatal, degenerative disease in which the body’s systems slowly shut down one by one. Rare and incurable, there was, quite simply, nothing to be done. They went home from the hospital stripped of an expected future that had been fully present just hours before.
Rapp first reflects on her own congenital birth defect, which resulted in the amputation of her left foot at four years old. Her experience as an amputee familiarized her with the pervasive mentality that anyone who was less than “whole” was to be pitied—and just how selfish, condescending, and maddening that pity is.
Ronan’s disability, in contrast, freed him from the judgment, longing to belong, and sense of otherness that had characterized her own childhood. The immediate, present, and sensory nature of Ronan’s life leads Rapp to understand the fallacy of the traditional notion that that death is something to be battled and overcome. Was it possible that a life could have its own meaning, removed from ambition and experience? That Ronan was, in fact, fully whole, despite the future that had been taken from him?
Rapp’s background in theology leads her to examine what she has read and learned against the immediate circumstances of her life. She reflects on what the spiritual has to say to us in times of crisis, and what we have to say to it. Her conversation with the unknown and unknowable leads to a more subtle understanding of life and its requisite mortality.
Through searing self-examination; visitations to Buddhist retreats and animal hospices and Catholic shrines; the kindness of friends and strangers; the words of writers and thinkers and poets that have lived through their own grief; and, most importantly, the heartbreaking, liberating act of writing Ronan’s story, Rapp allows us to experience the short, wondrous life of her son. The Still Point of the Turning of the World tells the story of Rapp’s effort to neither escape nor defeat her son’s diagnosis, but to live with it—and, in so doing, live it with him.
ABOUT EMILY RAPP
Emily Rapp has written extensive essays, nonfiction and book reviews for publications such as the New York Times, Los Angeles Times, Boston Globe, Salon, Slate, the Sun, O the Oprah Magazine, Redbook, and the Rumpus, among others. In addition to The Still Point of the Turning World she is the author of Poster Child: A Memoir. She has studied at Harvard University, Saint Olaf College, Trinity College-Dublin, and the University of Texas at Austin, where she was a James A. Michener Fellow. Rapp was born in Nebraska, grew up in Wyoming and Colorado, and currently lives in Madrid, New Mexico. She is professor of creative writing in the University of California-Riverside Palm Desert Low-Residency MFA program.
A CONVERSATION WITH EMILY RAPP
Almost every chapter of The Still Point of the Turning World begins with an epigram, and throughout the book you quote and discuss literature in relation to your situation with Ronan. Did you find your relationship to literature changing throughout your experience with Ronan?
I’ve always found a refuge in books and in stories; stepping into the world of a novel or a memoir is like moving through a door to a new place of understanding oneself and the world. Stories give us ways to assess “tragedy” and “luck” in different ways; the provide access to the lives of people who battle the external forces of the world and prevail or triumph in some way. I definitely felt that I needed books more than ever before during Ronan’s illness. I found escape, wisdom, guidance, and inspiration at a time when I needed all of those things very deeply.
The title of your memoir comes from a T. S. Eliot poem—what made you choose this particular line?
Being with Ronan was about being still, about presence, and more than that, about uncomplicated presence. The line from the poem resonates with the experience of being with Ronan, of holding him, a being with no ambition or desire. It was a pure and peaceful and quiet experience. Meanwhile, the world raged on with its clamor and noise while Ronan stayed the same.
What contemporary writers influence and inspire you?
Rebecca Solnit, for her stunning synthesis of source and thought, for her vision and fierce compassion mixed with a shining intelligence and clear-headed understanding of the injustice and chaos of the world. Gina Frangello for her ability to write about sex and relationships in a more richly nuanced way than anyone I’ve ever read. Rachel Dewoskin for the spirited voice in all of her books, nonfiction and fiction, the complicated, powerful women and the flawed, irresistible men, and for the way her books are like Swiss clocks, so tightly constructed and perfectly paced. Colm McCann for his brilliance with language and point of view shifts, and his ability to traverse time and space and character in amazing ways. Michael Ondaatje for the beauty of his individual sentences, the believable dream worlds his novels create. Sarah Sentilles for her ability to interrogate faith and injustice with a poetic heart.
In The Still Point of the Turning World you discuss the limitations of your Christian background when it came to dealing with Ronan’s diagnosis, particularly the mentality that death is something to be vanquished rather than embraced as a part of life. What are the limitations and challenges of this mentality?
It’s no secret that we live in a death-phobic culture, and to some extent I believe that stories of the resurrection are partly to blame. The notion that Jesus died in order to “overcome” death conjures, for me, troubling visions of heaven and the afterlife that can’t possibly be true (if we are all creating these worlds in our own imaginations), but that wield considerable power in our collective decision to believe that we can outpace death. We cannot. The body ages and dies. This is part of being alive, to face this final stage. Of course a belief in the resurrection is exactly that—a belief—and as such is not exactly subject to the same rules that may apply to an empirically provable fact, for example. That said, thinking of Ronan as an angel in heaven was decidedly unhelpful to me during his illness. It made no intellectual sense, it made no sense at all. People often say “God’s plan,” as a way of framing the chaotic nature of external events that buffet us about in the world. I would rather believe in chaos, and the fact that anything can happen to any of us at any moment, including (and eventually) death.
How did Ronan’s mortality change your view of your own?
Watching someone die makes you realize that you, yourself, and everyone you know and love, will someday die. In some ways it made me less afraid of my own death, which in turn made me more determined to live a full life according to my own rules and expectations.
One would think that, in this memoir of your son’s terminal illness, there wouldn’t be much talk of happiness, but it actually occupies a good part of your book. How did you come to redefine your idea of happiness through Ronan’s life? What implications does it have for how you live your life now?
Ronan was a beautiful, wonderful boy. It was impossible NOT to experience happiness in his presence. He actually inspired that in almost everyone who knew or held him, which was remarkable. Before Ronan was diagnosed I still clung to that belief that happiness was some kind of end point that I would reach and when I did so, everything would be “perfect.” But happiness is fleeting only. It is merely a collection of moments, moments only. When you feel happiness you cannot cling to it, you can only ride it before it ends. That was a way of living that I had never quite believed was possible before Ronan. It’s still not easy now, in fact it requires daily practice and awareness, but I try to notice when I feel happiness, which is a pretty uncomplicated emotion. I think I’m happy and I feel thankful for that, knowing that anything can happen to any of us at any moment. We might be “good” people who do the “right” things, and that has absolutely no impact on what external events might affect or strike us. Character and outcome are unrelated and nobody deserves anything. That’s not an easy lesson to learn.
In your memoir, Santa Fe is painted so clearly and beautifully it becomes its own entity. How is it different than the many places you’ve lived (many of which are described in the book)? Do you think your environment influences your writing?
The light in Santa Fe is very striking. Literally. The sunsets are like a sense event in almost every respect—the colors are so vibrant, the sky feels so close it’s as if you might reach out and touch it. Ronan was very alive in that light, as he went for a lot of walks and spent a good deal of time outside. I do think environment influences my writing, but I often don’t know that when it’s happening; it’s only in retrospect. For example, I’m working on a novel that’s set partially in Ireland and partially in London. Both places I experienced for the first time when I was very young, 19, and the impression they made on me is incalculable. I can remember details about those places that I can’t imagine about others; the striking newness of the landscapes to my then untraveled mind were immense, and they continue to loom large in my imagination. In terms of Santa Fe, I am glad we lived in a place where the sun was shining almost every day. Ronan was dying in bright rooms. That was important to me, and I think it made a huge difference in how I was able to cope with the day-to-day realities of his illness.
Initially, you resisted writing about anything too close to home, but soon realize that it’s impossible not to write about Ronan. Has this changed your writing in general—not just for this book, but also for future projects?
Ronan changed everything about my life, including the way I write and view my writing. The experience set off a kind of explosion in my brain. I felt both fearless and without ego; I just wanted to write and tell stories for the sake of doing it, because it felt like a way of keeping death at bay and also trying to understand it. Initially I didn’t care if anyone read what I wrote; I just knew I needed to write it. That urgency has lessened some in the year since his death, but it’s still present in my working life and habits.
Chapter 10 stands out both in its structure and its simplicity—what made you decide to include this chapter in the book, and why did you choose to deviate from the structure of the other chapters?
I wrote that list on a plane in a fury. I had a lot of furious, one-line bursts during Ronan’s illness; most of the other lines were disconnected from one another, but for some reason this list of sentences hung together as a kind of poetic whole. Sometimes traditional narrative fails us. I liked this list because it visually and tonally represented the fractured feeling that grief so often evokes.
You describe being surprised by the friends that came to your side and those that were nowhere to be found when things got difficult, partially because “grief is embarrassing.” How has this changed your own reaction to the grief of others? Is your response different than it used to be?
It’s very different. I don’t worry about saying the “right thing,” because I recognize that it’s not about me. People want support, they want presence, they need to know they’re not alone. This is what I believe. What kept me going was texts, calls, emails, and people coming to visit. If someone is struggling, you put your own worries and ego aside and you show up. Many people told me it was “too difficult for them” to be around Ronan and me because they had children or it just made them too sad. It made me sad also, but there I was, living it. Not knowing what to say is not an excuse to not say anything at all. When I have a friend who is struggling with something, I get in touch immediately. And I stay in touch. It’s up to them to tell me what they need, or if they want me to back off, and I will respect that, but when you’re grieving, I believe it helps to know you're not alone.
The Still Point of the Turning World chronicles the nine months following Ronan’s diagnosis. In the book, you acknowledge that the grief that will come after his passing will be different from what you’ve already experienced. Did you feel, in any way, that writing this book prepared you for that grief?
No, it did not. What’s called “anticipatory grief” is actually just a fancy term for dread. And dread is different from grief.
What are you working on now? Are you still focused primarily on nonfiction?
I love the essay form so I write a lot of essays for various publications. I review books regularly for the Boston Globe and other publications. But my primary work is a novel that has been living in me for a while, and which changed shape and direction during the writing of Still Point. I started writing as a fiction writer, so I’ve made a return to that.
Do you feel like you are finished telling Ronan’s story (on paper) or that there is more to tell? And if so, what form might it take?
I don’t think I will ever finish telling his story; for me, it’s a way of keeping him alive. In terms of form, I don’t know. I still write a great deal about him, one year after his death, in essays and other nonfiction pieces. And my experiences with him certainly affected the novel I’m working on, and how I understand my characters and maneuver the plot.
How has it felt, in writing and promoting this book, to tell Ronan’s story to strangers? Have any reactions to it surprised you?
I love talking about Ronan, because I loved him. We all like to talk about what is beloved to us. When you write about someone and another person reads about that beloved, they live on in another’s imagination. I love the idea of Ronan living in people’s minds all over the country and in many parts of the world.
Some people have accused me of using Ronan to promote my career, which is a hideous accusation. Writers do not choose the subjects that come to them; their job is to make story sense of whatever might land in their laps. I did not choose Tay-Sachs for Ronan, and I would trade any book in the world, any marginal or massive success, to have him back as a healthy boy living in the world. Another comment people often make has to do with my “bad luck” and my “bravery.” These concepts are meaningless. We all live in a chaotic world. That I choose to live on (versus the other option, which I guess would be suicide), despite the fact that I’ve been through a difficult experience, implies nothing about my bravery. It merely implies that I want to remain hopeful and loving and alive. And labeling someone unlucky is merely a way of distancing yourself from what you fear most. Bad things happen to good people; your good character is no bulwark against suffering or pain. Those reactions surprised me as I believe I address both quite specifically in the book. But that is part of writing a book; you write it, and it lives on in people’s minds in all kinds of unimaginable, indescribable ways.
- A topic Rapp discusses is the idea of wellness versus health—what is the difference between the two? Do you believe we tend to associate wellness with wholeness, and is this a fallacy?
- In making decisions for Ronan’s palliative care, Rapp brings up the case of Baby Joseph and contends that the concept of life’s “value” should be replaced with the word “quality.” What is the difference between the “value of life” and the “quality of life” and what do you think we prioritize in contemporary society?
- Rapp refers to her and the other mothers of children with Tay-Sachs as “Dragon Mothers.” What are the characteristics of a Dragon Mother and how do their priorities differ from those of other mothers?
- In the days after Ronan’s diagnosis, Rapp has trouble with the one activity that she has always found solace in—reading. She can’t find any solace in books until she picks up a collection of myths. What about myths does Rapp find so appealing? How do they differ from the other forms of literature she discusses throughout the book?
- At one point Rapp tells her husband, Rick, “It’s as if there’s another baby right behind this baby, and we’ll never get to meet him” (p. 75). What does she mean by this? And how does she reconcile this feeling with the baby she does have?
- How is Ronan described in The Still Point of the Turning World? What language does Rapp use to describe him? What are the challenges of writing a portrait of a person without language? Does Rapp overcome them or embrace them?
- Rapp writes that traditional parenting guides are of no help when it comes to being a mother to Ronan and in the end the only guide was her imagination (p. 176). What does this mean? In what ways do we see Rapp using her imagination as a guide throughout her memoir?
- What are some examples of how Rapp’s own disability (the loss of her leg) teaches her how to be a mother to Ronan?
- On page 54, Rapp suggests that there is a leap “from experience to meaning” and that we often let other people make it for us. What is the benefit of making this leap on our own, as Ronan must?
- What is the role of Rapp’s husband, Rick, in the narrative? What are some moments in the memoir where Rapp describes their partnership? Would you say that they go through this experience alone, together, or both?
- At one point, Rapp and her husband visit an animal hospice with Ronan. How does Rapp compare Ronan’s experience of life with those of the animals?
- What is Rapp’s opinion of “future-focused” parenting?
- With all the vocabulary at her disposal, why is the single, simple word “Gee” so meaningful to Rapp?
A Conversation with Emily Rapp, author of The Still Point of the Turning World
Why did you write this book?
After Ronan was diagnosed, I needed to focus my energies on something other than despair. Writing this book saved me, in the sense that it gave me a constructive task to do each day other than take care of my son, the sight of whom filled me with an immense grief and panic and sadness and joy and love. I felt compelled to write it -- I experienced hypergraphia, where I literally couldn't stop writing. And, finally, writing the book felt like a way of kicking back at the chaos of the universe, at this incredibly raw deal: you gave me this experience? Watch and see what I do with it.
Can you describe the experience of writing and sharing Ronan's story?
Writing this book clarified an important distinction for me: that writing is cathartic, not therapeutic. Catharsis is from the Greek word to strip away, to burn away the unnecessary, and that's what I felt I was doing. The end goal of a cathartic artistic experience is art. The end goal of a therapeutic experience is emotional stability or regulation. I felt manic and crazed while I wrote this book, and also completely, terrifyingly free. I felt I had nothing to lose, and so I wrote the kind of book I've always wanted to write, I just never thought I'd be writing it about this particular subject. As an artist, the experience was electrifying. As a person, it was draining and exhausting.
Did writing help you explore your grief?
I'm not sure it helped in the sense that it made me feel better, but every artist wants to create order from chaos. Grief is the ultimate emotional chaos -- it's a full body experience and there's no way to numb it, erase it, get out of it. In a sense, writing about grief externalized the experience. I could examine it objectively, smell it, taste it, throw it around. And I was angry, and asking questions in written form helped me manage that rage.
You drew upon many literary influences, from C.S. Lewis to Mary Shelley to Sylvia Plath. How did these writers and thinkers help you process your experience? Was anyone particularly influential?
Lewis and Shelly and Plath have always been touchstones for me, so it's no mistake that they helped me manage this experience as well. Part of what helped me manage my grief experience was to make my world big, and because I'm a writer and a reader, big meant vertically deep. I read and read and read -- as a distraction, but also as a way of finding out how others had survived sorrow and moved on. I also found the most helpful writers to be those who were also philosophical in some way, and this fits with my background as a theologian. I was asking the biggest questions about the extremities of the human emotional experience, and I felt I needed literary guides who had done the same kind of intellectual tunneling.
The Still Point of the Turning World is based on your 2011 New York Times essay, “Notes from a Dragon Mom.” What compelled you to write that piece? What was the response like?
After Ronan was diagnosed, I found myself isolated as a parent in the “normal” world. I was a part of the parenting group of families with Tay-Sachs, but out at the grocery store, in the mall, walking outside -- I just felt that the world was going on and I was not a part of it, and I was weary of people feeling sorry for me. As I got to know these dragon parents, as I call them, I realized that they were, in fact, practicing the true art of parenting: which is a slow process of letting go, only we would be letting our children go in the most epic sense, in that we would witness their deaths. They were not objects of pity, and their lives were not hideously said; they were tough, and their lives were beautiful and difficult. The response was overwhelming, from parents and non-parents, and taught me the lesson that there is no ladder of loss or suffering, and that it is general in the world.
What does it mean to you, now, to be a good parent and to live a meaningful life?
My goal as a parent is to make Ronan as comfortable as possible, and to fill his short life with meaningful experiences; music, outdoor activities, and most of all, in these final stages of his life, comfort. He is who he is. This is a lesson I will never forget about parenting: that children are people, not projects. My responsibility, I feel, in the wake of Ronan's raw deal, is to live the biggest, fullest, richest life possible, because he was never given the opportunity to do so.
What has Ronan taught you?
So much. He has taught me that grief has a terrible beauty because it is an expression of the depth of one's love. He has taught me that there is no use obsessing about the past or worrying about the future, but there is only the moment. He has taught me that the world is chaos, and it will reach all of us, that we have no control. That we are all mortal, and that we should love as hard as we can while we're here, even if it means experiencing gutting loss if we lose that person. He taught me that I'm not alone, and that friendships I've cultivated over years and decades are rock solid, reliable, life-sustaining.
What do you hope readers will take away from your book?
That the human project is to love and to lose and to make meaning from this fundamental truth. I hope that people will practice a radical generosity and empathy, be more authentic, let themselves be more vulnerable and real, in public and in private.