What stops her is not grit or bravery or strength. She does not summon an inner resilience — a word she will examine (and dismantle) in great detail. Instead, Rapp Black chooses to live after experiencing two potentially conflicting thoughts: “I don’t want to live my life, this life,” and “I don’t want to end my life, this life.” As much as she wants to stop her son’s suffering and escape the unbearable waiting for his death, she also wants to love again, “to know hope and happiness, to be in the world, doing work that feels real and meaningful.”
That work is made manifest in Sanctuary, in which Rapp Black tells of falling in love and becoming a mother again after Ronan dies in February 2013. This expansive memoir travels back and forth through time, dwelling in deeply personal detail on Rapp Black’s efforts to forge a new life while still honoring and learning from the old. We meet Kent, the man she falls in love with after separating from Ronan’s father, and Charlie, their vivacious, nimble daughter; we witness Ronan’s heartbreaking death, the enormous outpouring of support from friends, and the vitriolic end to her marriage with Ronan’s father.
Rapp Black has written extensively about Ronan, chronicling his diagnosis and the progress of his disease, in her 2013 book The Still Point of the Turning World. In Sanctuary, she writes about his death with elegant poise and a tenderness that is equal parts raw and generous: “His body was weighted with absence. His breath was gone. Belief set in then, together with a darkness that felt bigger and more textured and complicated than the one filling in the windows.” Offering poignant details, such as Ronan’s weight when he died (11 pounds) and the shroud with an Irish design she used to wrap his body, she writes with fierce honesty and zero sentimentality, in a way that distinguishes her from many others who write about grief and trauma. She says that she is “no warrior of love,” a reference to authors whose work is explicitly geared toward inspiring readers; a book about losing a child and choosing to seek out a rich and rewarding life afterward calls for truthfulness and introspection, not Instagram-ready platitudes.
After Ronan’s diagnosis, Rapp Black “started to hear about resilience everywhere,” and she realized that the word “has become so much a part of the vernacular as to have practically become interchangeable with ‘strong’ or ‘toughness.’” Assurances from others that she is resilient enough to survive Ronan’s diagnosis and death are not helpful or encouraging: “Brave. Resilient. Strong. These are just words, but of course words are never just words, and truly understanding a word is not just a matter of semantics.” After Ronan dies, Rapp Black interprets condolences that use the word resilience as a mandate to quickly move on, which she refuses to do; she will always be Ronan’s mother and thus resists overtures to neatly compartmentalize her life. And still the word resilience is everywhere. So, in the midst of grieving Ronan and the mother she was to him, while also falling in love and becoming pregnant again, Rapp Black takes on another task: to deconstruct the word in order to unearth its true meaning. She writes, “I didn’t want to nix ‘resilience’ from my vocabulary, but I wanted to create space around this word, turn it over, turn it around.”
This she does with a narrative structure that interweaves her personal story of motherhood, death, love, and birth with a more intellectual exploration of seemingly disparate phenomena. In one section, Rapp Black turns to the concept of dark matter to understand how her two children — one living, one dead, both sharing her DNA and her love — might coexist:
Once you’ve carried a child inside of you, his or her DNA stays in your body forever, a few free-floating cells that remain until they die with you, and then, too, they live on in some way — as molecules, or as that mysterious, invisible stuff of the world scientists call dark matter.
Rapp Black grounds this line of thought by circling back to the flaws in Ronan’s DNA that caused his early death and also made possible Charlie’s rich and treasured life: “Charlie and Ronan will only ever coexist in this energy-dense air, and in their most primitive forms, as cells dividing inside the darkness of my body, or as threads of coded helix crossing in the chaos of my blood — the same blood that carried Tay-Sachs.”
Her inquiry into the meaning of resilience also includes Holocaust diaries and journals kept by children during the war, some of whom survived and others who didn’t, as well as objects and living beings that display strength, endurance, and fragility, such as Viking ships and butterflies. Of the Viking ships, Rapp Black finds solace in learning that they are built with warped wood that is made to break, which actually makes them more seaworthy. The author is intimately familiar with wood: at age four, her leg was partially amputated due to a congenital defect, and for years she wore wooden prostheses. That fierce Vikings relied on this softened and breakable material proves revelatory. During the course of Ronan’s dying, Rapp Black believed that to “soften and to warp would be to fail, and if I was already failing to protect my child, where did that leave me?” If the Vikings could treasure malleability, might she, too?
The concept of softening arises again in the chapter largely devoted to butterflies — their transformation from caterpillar to flying insect, the material that makes their wings, and their delicacy, strength, lightness, and power. During a visit to a butterfly sanctuary with Charlie, she learns that an insect with an injured wing can still fly. The idea that “a rupture — in the body, heart, or mind — that isn’t fully mended doesn’t prohibit life or the full living of it, through both joy and pain” resonates, as does the connection between the name of the protein substance that gives butterfly wings elasticity and strength — resilin — and the word “resilience.” The wings of butterflies and other insects can recoil and spring back into shape for flying, and such a quality is essential to survival.
Some writers might belabor the metaphor, but Rapp Black simply incorporates it into her evolving understanding of resilience. While the textbook definition of resilience includes a “desire to survive” as an essential characteristic, the butterflies lead her to conclude that resilience might have less to do with desire and more to do with instinct: “What I see in these insects is a resilience released from the heroic images with which it is often paired, the implication being that focused effort and striving might lead to wholeness or happiness.”
Rapp Black examines the concept of resilience from all angles until she ultimately divorces the word from its pseudoscientific meanings in popular culture, its association with “positive thinking” and “wholeness.” Resilience, ultimately, is simply the will to live. Just as caterpillars transform into butterflies, so do we transform through our life experiences. We don’t need to get through them flawlessly, without breaking or bending; rather, to be resilient, we must go on. That’s all. “All of us are required, at some point, to transform in some way (mentally, physically, emotionally) in order to live. It doesn’t make us brave or special or worthy of being singled out. It makes us living creatures of malleable, mortal, and, yes, resilient, stuff,” she writes. What a refreshing take! Life can be messy, painful, and difficult, while also being joyful, loving, and accepting — sometimes simultaneously.
Some of the book’s most beautiful passages come when the author writes about Charlie, an intelligent, curious girl who accepts the fact of her brother Ronan’s death without the baggage or trepidation of adults. Charlie understands that Ronan was alive and now he’s not, and that they are part of the same family. She explores the world with a child’s innocence and humanity (an early chapter shows her having a tantrum). Rapp Black’s love for her daughter is as tangible as her love for her son: “Charlie is so alive, but she is not in Ronan’s place, not a ‘replacement child.’ Instead, she is living her life alongside him, if you count memory as a living thing.”
Rapp Black’s exquisite prose is as compelling as her intellectual rigor. After Ronan’s death, her lover and future husband Kent becomes “the planet of stability and love and graciousness and physicality that I orbit around.” She moves into Kent’s home, a beautiful, restored church in a small town near Santa Fe, the day after Ronan dies, and the church’s literal sanctuary becomes hers, offering a refuge from the raw and probing outside world. She is immensely grateful for the adobe walls Kent built around the church years before the two met, and he cares for her with a tenderness that feels absolutely essential to her survival. They take long baths at night in the claw-foot tub in the church’s solarium: “It feels like we’re resting in a constellation, rocked by the sky, the bright stars pinned overhead as if holding the darkness in place.”
Though Kent and his church are her immediate sanctuaries after Ronan dies, they are not the only ones. After the family moves to California for jobs, she finds refuge in their domestic life. Throughout the memoir, Rapp Black pays homage to the concept of sanctuaries as harbors of love and protection (though not of safety; Ronan’s disease and death have disabused her of the notion that safety exists). She regularly returns to the concept of sanctuaries as one might reach for a wall in the dark to guide them to a doorway. Her sanctuaries include actual places, as well as loyal friendships, family, exercise, and the solitude of her own mind. They make endurance possible: “Any space with walls or without might become a sanctuary; any object might signify one; any memory might offer one up; any vessel might take you there.”
In the end, Sanctuary is not a memoir of grief or of survival, but rather simply a story about living. Rapp Black is astute and sensitive, and she invites readers to bear witness to the intimate, intense, and profound experiences of losing and gaining so much. Being Ronan’s mother has changed her in many ways, just as being Charlie’s mother has and will continue to do so. She writes, “To see a human body that houses someone cross that liminal space between life and death in just a breath, even after a long labor, rewrites the world, with all its pitfalls and possibilities.” Having taken the journey, she invites us along and, in doing so, opens our world to new possibilities.
Rachel Walker is a writer and editor based in Boulder, Colorado. She holds an MFA in fiction from Bennington Writing Seminars and is working on a novel. Follow her on Twitter at @racheljowalker.