Very shortly after giving birth to my first baby, I texted the friends and family who’d been waiting for news. I wrote: baby boy, born 12:36 AM. He is perfect. It wasn’t until months later, when the haze of postpartum exhaustion had slightly lifted, that I thought more carefully about the word perfect. In the moment, I’d primarily been expressing my wonder: this tiny creature who’d grown inside me had turned out to be a particular person, perfect because he was himself, breathing and blinking his blue eyes at us in the very wise way of new babies.
But calling him perfect also hints at the ableism at the heart of much of how we talk about pregnancy and children, as in the example of a pregnant woman who shrugs off questions about her unborn child’s sex by saying it doesn’t matter, “as long as the baby’s healthy.” A few months into my son’s life, a family friend’s daughter, born just a few weeks before my son, was diagnosed with a rare genetic condition. As I’ve watched a woman I’ve known since childhood not only fight for her child’s access to healthcare and therapeutic services and education but also love and celebrate a child whose life looks different than she might have planned, I’ve reconsidered those assumptions about perfection and health. What would it mean to love a child who the world saw as less than perfect?
This is the question at the heart of Heather Lanier’s Raising a Rare Girl: A Memoir, a book about how raising a child with an ultra-rare syndrome challenged Lanier’s perfectionism and ableism. As Lanier documented in her viral essay, Superbabies Don’t Cry, she’d spent her pregnancy trying to “make a SuperBaby.” To do this, she not only followed the standard advice to avoid soft cheese and lunch meat, but also ate organic and shunned wheat and GMOs, talked to the baby, and held her cell phone away from her belly to protect the growing baby from its electromagnetic waves. After a 36-hour labor, which Lanier memorably describes as “an apocalypse in my perineum,” her daughter Fiona is born, full-term but weighing only 4 pounds, 12 ounces, so small she doesn’t even show up on the growth chart. The baby’s size so alarms the medical staff at the hospital that shortly after Fiona’s birth, a nurse enters the room and asks, “Mom, did you take any drugs while pregnant?” Lanier does not report her response—I imagine she was stunned—and instead tells us what she wishes she’d said: “No, Nurse, I wanted to say. I took superfoods. I took reiki. I took electronica chords and affirmations.”
They take Fiona home from the hospital, and Lanier describes how she devotes herself to nursing, believing that if she works hard enough, her tiny baby can get caught up. After a friend refers her to a new pediatrician, they take their seven-pound, three-month-old baby to the doctor, who examines Fiona and says, “I suspect she has a syndrome of some kind.” Following that appointment, Fiona is diagnosed with Wolf-Hirschhorn syndrome, which is caused by “missing genetic material on the short arm of the fourth chromosome.” Wolf-Hirschhorn, which occurs in only 1 in 50,000 births, is so rare that, as Lanier puts it, “your odds of becoming a pro athlete are twice as good as your odds of having Wolf-Hirschhorn.” This syndrome accounts for Fiona’s small size and distinctive facial features. As Lanier and her husband read about the syndrome, they learn that, in the most severe cases, children with Wolf-Hirschhorn do not learn to walk or feed themselves; 1 in 3 will not live past the age of two. While Lanier struggles with this dire potential prognosis, her husband, an Episcopal priest minister, resolves that, “if our time with her is limited . . . then I’m just gonna make sure I love her. The best I can, every day.”
A conversation with the geneticist who diagnoses Fiona establishes a thread that will run through the rest of the book: the power of language in shaping how we consider the potential of children with disabilities. This doctor calls Fiona’s syndrome a “genetic deletion” rather than a “defect,” “genetic anomaly” rather than “abnormality,” and speaks of “intellectual disability” rather than “retardation.” This language, Lanier writes, “offered the not-so-common impression that my kid could be both significantly disabled and 100 percent right.”
This thread continues as Fiona begins to receive early intervention services. Ohio, where Lanier and her family live when Fiona is born, uses a “teaching model” of early intervention, meaning that the professionals sent to the homes of children needing services are intended to teach the parents to deliver those services, essentially requiring parents to become speech therapists, physical therapists, and occupational therapists all in one. These therapists left Lanier with a never-ending list of tasks so that all her time with her daughter is consumed by activities with a therapeutic aim: spooning purees, narrating objects around the house, bouncing her in a chair, reading Dr. Seuss. When Lanier asks one therapist just how much tummy time she should be doing, in the hopes that she’ll get a benchmark she can aim for and finally feel like she’s met her target, the therapist instead tells her “really, you can never do enough tummy time.” This insistence that whatever you’re doing, it’s not quite enough, is a cornerstone of American motherhood. In contrast, once the family moves to Vermont for Lanier’s husband’s new job, they encounter an entirely different therapeutic approach. In Vermont, the therapists who work with Fiona use a “capacity-building lens,” meaning that rather than focusing on challenges and problems, they look for children’s strengths and potential. In Ohio, Fiona’s therapists had seen her through a “deficit lens.” In this approach, Lanier explains, therapists tend to see the children they work with as “a problem in need of ‘fixing,'” although focusing on children’s problems and shortcomings results in worse outcomes. In using a capacity-building lens, the Vermont therapists not only celebrate Fiona’s current abilities but also help her make significant progress in areas like moving and communicating that the Ohio therapists would have seen as beyond her. Lanier puts it succinctly: “kids grow more when professionals see their strengths.”
Fiona’s communicative development is, for me, the most fascinating part of the book. Children with Wolf-Hirschhorn have the same desire to communicate as other children, but need more support to do so. The first step is for Fiona to develop a “yes”—a signal she can use to communicate her interest in food or activities—and, at 22 months, she finds it, a whole-body nod that becomes a milestone for her and her family. Later, her therapists work with the family to select a communication device that will allow Fiona to speak with her family, and eventually, her teacher and classmates at school. In a powerful scene that illustrates the small things educators can do to ensure that children with disabilities are fully included in the community of the school, the speech therapist addresses the assembled school on Fiona’s first day of kindergarten and models three ways of saying good morning: with spoken words, with ASL, and with technology, showing the students how a communication device like Fiona’s can be used to speak. The speech therapist presents Fiona’s communication device as just one option among many for communication, and she visits every classroom in the school to teach them how to use technology to speak. Rather than reflecting a shortcoming, Fiona’s communication device is presented as an equally valid way of communicating, and Fiona’s outgoing personality makes her, as Lanier puts it, a “mini-celebrity” at school.
The insights of Lanier’s book reach far beyond families raising children with disabilities. Lanier’s book provides essential insights into what it’s like to love someone—a child, a family member, a spouse, a friend—as themself, and not as what we wish they’d become. Near the end of the book, Lanier asserts that, “the point of this human life, I believe, is love.” The love Lanier describes isn’t necessarily sweet or simple, but is instead a “ridiculous and brave and risky act” that “turns my heart into taffy, stretches it across the broad spectrum of human feeling.” Lanier’s love is a lesson for all of us.