Hilary Yancey’s son, Jackson, was born with significant medical needs. After 43 days at Baylor Scott & White’s neonatal intensive care unit in Temple, Yancey and her husband, Preston, brought Jack home, and finding themselves temporarily without a night nurse, the two cared for him in overnight shifts. Hers started at 3 a.m.
“It was in those night watch hours that I started to write,” she said. “Writing is the way I make sense of the world.”
“Forgiving God: A Story of Faith” is a memoir about Yancey’s pregnancy and early months with Jack. An ultrasound at 20 weeks showed he had a cleft lip and cleft palate, and a fetal MRI revealed he had only one eye and one ear and potential breathing difficulties. Jack is now 3. At his twice-yearly tracheostomy checkups, his doctors are pleased with how he’s doing.
“Every time they remark how big he is, how much he’s grown, how stable he is,” Yancey said. “He’s developed much like any other gangly 3-year-old boy.”
Yancey grew up outside Boston and always wrote in journals, beginning with a green Harry Potter one with Hedwig on the cover. During high school she attended Waring School, a private liberal arts institution, and took three semesters of poetry for language arts credit.
“It’s not my main genre, but as a writer, it’s even more important for me to be reading good poetry,” she said, pulling from her bag the most recent poetry collection she’s reading, Alfred Nicol’s “Animal Psalms.” “I just read one a day. My poetry teacher said you have to read every poem twice and once has to be out loud.”
After high school Yancey attended Gordon College in Wenham, Massachusetts, where, as a Pike Scholar, she designed her own major in ethics, politics and religion.
She and Preston got acquainted online, when they both had Christian blogs. Preston earned his undergraduate degree at Baylor University, and when Hilary was looking at options for where to pursue a Ph.D. in philosophy, she looked to his alma mater. The couple married in June 2014, moved to Waco that July, and Yancey started her graduate work in August. She is currently teaching an introductory philosophy class in critical thinking at Baylor.
“I’m ABD (all but dissertation). I’m done with coursework and exams,” she said. Yancey hopes to defend her dissertation by the end of this year and graduate with her doctorate in May 2020.
The experience of bringing Jack into the world meant a very different family life than what Yancey and her husband anticipated when they were falling in love, bonding over John Green’s young adult novel “The Fault in Our Stars.” Echoing the well-known “Okay,” “Okay” of that novel’s couple, in chapter 5 of “Forgiving God” she writes:
“We said okay a thousand times. It’s tattooed on our ring fingers from our honeymoon when the word was our always, our fault in the stars, our fresh love. We said okay now, tattooing it on our hearts, on each other, on Jack. It is the one remnant of prayer that has remained.”
The early morning writing Yancey did about her experience with Jack began as stream-of-consciousness but evolved into something more narrative.
“I stopped and said, ‘I’m not just processing. I seem to be trying to create something to help someone else understand what my experience was like,’” she said.
Yancey and Preston, who is director of Christian formation at Holy Spirit Episcopal Church and who has published two books of his own, discussed the possibility of turning her journals into something other people could read.
“He said, ‘OK, write from start to end and see what you have.’ By the end I had most of a manuscript,” she said.
Yancey then got in touch with an agent with whom she had connections, Angela Scheff, with the Christopher Ferebee Agency. Scheff agreed to represent Yancey, and the two of them workshopped the manuscript.
“It’s undergone several metamorphoses,” she said. “I have a strong tendency to think of events in multiple kinds of order: chronological, the order of how important they were to my own understanding of my life or Jack’s life, or my encounters with God. All of those orders are different. Hopefully they’re braided together well.”
Her agent helped Yancey find the best way to move the story forward while exploring philosophical, ethical and religious questions. The book landed with FaithWords, the Christian imprint of Hachette Book Group.
“A big part of this is contending with God and a sense of a companion doing the same thing,” she said. “I think it can be a surprising thing to do. God is all-knowing and all-powerful, so maybe it’s counterintuitive to contend with the Almighty with things that seem wrong. But that’s also explicitly the invitation we have in Scripture. It’s really hard to do but really good to do.”
Yancey’s book lives in that hard but good space. She questions why Santa visits the NICU, but not, seemingly, Jesus. And why sometimes it feels like Christians live in “the house next door to Jairus,” whose daughter was resurrected by Jesus, according to the Bible.
One audience Yancey had in mind for the book is other parents who have had a child in a NICU for any reason.
“[Jack] was full term, but I’ve talked with others who maybe their kids were born prematurely or needed heart surgery. Each experience was radically different, but we’ve all been there — no matter the NICU, the state, the doctor,” she said. “I’ve been behind that privacy screen, and I’ve had my day scheduled around waiting for the doctors to make their morning rounds, instead of the regular passing of minutes and hours.”
Her favorite part of the book to write was in “Chapter 5: The NICU,” in which she closed her eyes, walked the hospital in her mind and led the reader through that map.
“What I love most about the written word is it makes images out of nothing but the fact of you reading the words. The better the writing, the better the image,” she said.
Yancey traces every step “brick by brick,” from walking into the hospital, down the hallways, up the elevator to the third floor, turning left, counting doors until she reached Jack:
“You go home from the NICU and you never go home, because your muscles build memories and hold them for you. My legs are still walking these hallways, my heart trailing behind, suggesting listlessly, quietly, that if we turn right, instead of left, if we take the elevator down, not up, if we drive back up 35, we might pretend it never happened.”
Yancey says the drive to Temple still brings back those memories.
“If we drive home a certain way, it’s the same way as from the hotel where we were staying to the NICU, and I find myself holding my breath a little. I know my son is fine, but something about that stretch of road, you don’t realize until you’ve passed by,” she said. “It’s such a hard experience to convey. There’s a lot that’s unspeakable about it. It’s an eerie place.”
Even before Jack came into her life, Yancey was interested in the philosophy of disabilities. In college she took an American Sign Language class and later, after becoming a Ph.D. student, she discovered the work of Teresa Blankmeyer-Burke, who earned her doctorate of philosophy using ASL. These experiences and others contributed to Yancey’s interest in looking for ways philosophy can “take root in real life,” she said.
“My dissertation is in metaphysics. In metaphysics we’re always asking questions about the nature of reality — what is a body, really? I’m looking at what it means for an object to be part of the human body. Like a prosthesis — is it a sophisticated tool, like a calculator, or is it a body part, like a leg?” she said. “As we develop increasingly sophisticated prosthetic technologies, things that are integrated with nervous systems and brain activities, we’re pressed to ask questions, like, ‘Is that your hand, or is that something else?’ One of the things I hope I can do is hear from people who have prostheses and understand how they see them in relation to their bodies, how that can help us think through our interaction with those objects.”
Yancey believes these philosophical questions have practical applications for everything from end-of-life care to human enhancement. The questions include asking what, exactly, is the nature of an artificial heart? How should we think about it, and how does that affect the care we give a person with one?
“Can we turn off an artificial heart? Is it a medical device?” she asked. “If it’s a body part, we don’t turn off human hearts.”
As a philosopher, Yancey hopes her work will move beyond what she calls “the fun theoretical stuff.”
“One of the reasons I think my dissertation is helpful, or could be helpful, is because in medical ethics and other related areas of political philosophy, we place a value on bodies. We think they’re owed a certain kind of respect,” she said.
In “Chapter 7: Philosophy,” Yancey writes that her view of Jack’s needs has changed:
“I do not believe that Jack’s differences are obstacles he will overcome. I don’t believe that the mysteries of his missing eye and ear, his smaller chin, his cleft, are best thought about as harms. They are different; they are rare. But they also carry a certain kind of simplicity; they just are.”
She says all parents learn as they get to know their children. This lesson has become all the more real now that the Yanceys have a second child, Junia, who is 1 year old.
“With her, I’m figuring it out in the same way, only we don’t have nurses to help us,” Yancey said, while acknowledging, “I have probably a lot less panic around a wider range of medical situations and needs because I’ve learned how to not panic.”
Jack needs a team of helpers, and Yancey has found everything her son needs in Waco. His nursing care is provided by Pals Home Health. Twice a week he goes to Elite Therapy Center.
“He’s in a total communication approach. As part of his speech therapy he has sign language. He has some verbalization approximation. Given his jaw abnormalities, articulation is difficult. He uses picture exchange, telling a story through pictures, pointing to cars and people and asking for things and explaining things to us,” she said. “He gets occupational therapy, fine motor skills, lengthening his attention span. He has some sensory processing challenges. They do prewriting, art stuff. He loves it.”
Yancey still journals every day.
“I keep a journal with me all the time. It’s in my diaper bag right now, a little Moleskine-type, blank pages, not lines. I like filling a journal all the way. I never switch until I’m done. I go through three or four a year,” she said. “Since grad school I’ve used the same notebook for taking notes on philosophy lectures, half a poem, a book plan, a to-do list. I like that when I open it, all of the parts of me are there: the academic, the prayerful, the creative and the practical — ‘Don’t forget to pick up the dog from doggie day care [Dogtopia].’”
The past two summers the Yanceys have traveled by car to visit her family in Boston.
“I thought I would want to move back up there, but I love it here. I love the way a community around us has emerged, a community of support for Jack. He has this infrastructure here in Waco. I love the Baylor community. We love our church,” she said. “It was a surprising thing. I didn’t ever think to myself, ‘I’m a Texan.’ You wake up one day and think, ‘This is home.’”