Writer Shares Rare Joys of Raising a Disabled Child

Heather Lanier’s memoir, Raising a Rare Girl, explores the shock and subsequent pleasures of her daughter’s diagnosis.

heather lanier

Heather Lanier says raising her differently abled daughter, Fiona, has changed her outlook about life. Courtesy of Justin Lanier

While carrying her first child, Heather Lanier ate exclusively organic produce, practiced self-hypnosis to prepare for an unmedicated birth, and consulted the esteemed maternal advice book, What to Expect When You’re Expecting. 

Lanier was on a quest to produce a super baby—an ultra-healthy little human. 

After all of her preparation, Lanier and her husband, Justin, were not equipped for their daughter’s diagnosis. Fiona was born with Wolf-Hirschhorn syndrome, an ultra-rare genetic disease that occurs in one in 50,000 births. Born full-term at 4 pounds 12 ounces, Fiona faced a litany of challenges. She would have intellectual and developmental disabilities. She might never walk. Eating autonomously would be difficult. The odds of developing active speech were stacked against her. Seizures were almost guaranteed. Fiona might not reach her second birthday. 

The news was shattering.

“I felt like my world got broken open, like a rug got pulled out from under me,” says Lanier.

Lanier details the life-altering experience in her intimate debut memoir, Raising a Rare Girl (Penguin Press). On her journey to embracing her unique child, she sheds her preconceptions of parenthood, combats the medical world’s definition of normal, and welcomes a second child, Petra, who is able-bodied. Justin, an Episcopal priest, buoys Lanier with his spiritual optimism as she revises her definition of motherhood. 

An assistant professor of creative writing at Rowan University and an award-winning poet, Lanier, who lives in the Gloucester County borough of Pitman, makes sense of her experiences by living them “a second time on the page.” To process her parenting journey, Lanier started a blog, Star in Her Eye, when Fiona was one. At first, she was writing from a place of grief. 

Lanier longed for an able-bodied baby—“a child who I could move through the world with and nobody would question her existence, question her body,” says Lanier. 

This yearning was influenced by the intrusive questions and presumptions of strangers: Was Fiona premature? Is she okay? How do they cure that? You’ll always grieve for the child you didn’t have.

At times, the medical world’s reaction to Fiona was alarming. The day after she was born, a pediatrician called Fiona a “bad seed.” When Fiona didn’t meet a fine-motor-skills benchmark, an early interventionist said, “It’s like she’s at zero.” Lanier’s homeopath told her, “You know, you can always put her in a home.” 

As her calendar filled with appointments for specialists and therapists, Lanier learned to be her daughter’s advocate. Her duties included sussing out each expert’s perspective. Were they honoring her child’s humanity? “Sometimes,” says Lanier, “we would get advice from a perspective that saw her, I felt, as something that needed to be fixed—some thing.”

Even deeper than Lanier’s initial wish for normalcy was a desire for camaraderie with fellow parents. 

“Other parents that I would encounter belonged to one another, in a sense,” says Lanier. “They belonged to a similar experience of what it was like to raise a typical child. And I didn’t.”

Attending a national conference for Wolf-Hirschhorn syndrome was a turning point for the Laniers. At the Indianapolis Sheraton Hotel, they met families who also had children with the disease. Secured in flotation devices, kids who looked like Fiona, with slender bodies and wide-set eyes, plunged into the hotel pool. A teenager who had a crush on Justin Bieber happily played with a string of beads while seated in her wheelchair. A father smiled as he spoon-fed his 20-something daughter from a portable grinder. Here, their parenting experience was normal. Here, the Laniers found a community. 

“Everybody was living their beautiful, messy lives. I got to see that that would happen for us, too, in whatever way Fiona’s body would develop,” says Lanier. “It was a huge part of healing and coming to a place of deep acceptance, and even, then, joy in our life as Fiona’s parents.”

* * *

More than a tale of acceptance and a tribute to her daughter, Lanier’s memoir is a critique of society’s ableism—discrimination and prejudice directed at those with disabilities. At a time when awareness of systemic racism is increasing through the Black Lives Matter movement, Lanier helps to catapult ableism into society’s consciousness as well.

Lanier does this by pointing out the ways in which she had ranked an able-bodied life above a disabled one. 

At one point in her memoir, Lanier admits to her sister that she “didn’t sign up for this.” Then, a wiser Lanier looks over her own shoulder and acknowledges her former ableist thoughts. “Of course I signed up for it,” she writes. “When we venture to become parents, we sign up for the fragility of life.”

When Fiona was six, Lanier published the personal essay SuperBabies Don’t Cry. Shortly after, she wrote her 100th post for the blog she had been maintaining for five years. Then her 2017 Ted Talk, “Good’ and ‘Bad’ are Incomplete Stories We Tell Ourselves,” went viral, garnering more than 2.5 million views. That same year, when a book agent approached Lanier about writing her memoir, she was armed with material. 

“I didn’t have the same voice, though,” says Lanier. “The person who wrote when Fiona was one was very different from the person who was writing when she was six, because I was no longer grieving.”

The perennial best-selling book When Things Fall Apart, by Tibetan Buddhist nun Pema Chödrön, helped Lanier move through her grief. When writing her memoir, Lanier wanted to infuse it with similar sentiments: “What does it feel like to have what you think is a failure and it turns out to be the biggest gift?” says Lanier. She adds, “We don’t know what will make us happy, and that’s great, because what’s on the other side of that ends up being way better than what we had planned.” 

Fiona, now 9, walks and talks independently. She loves to wear hats and groove to music. Throughout this transformative decade of her life, Lanier’s perspective has shifted. 

“My daughter’s syndrome is just a part of diversity,” says Lanier. “Disability is all an aspect of human diversity, rather than something broken, or something in need of fixing.”

Much of the memoir takes place in Ohio, where Fiona was born, and Vermont, where she entered the public school system. Last year, the Laniers moved to Pitman, near Glassboro, when Lanier accepted her job at Rowan University. She teaches undergraduate and graduate courses. From living in many different places, Lanier has learned to embrace new surroundings quickly. 

“[I] don’t spend too much time longing for the thing that was great about the last place,” she says. About once a week, the family of four piles into the car and heads to the Shore. “The thing that we love about New Jersey the most so far is easy access to the beach—or the Shore, as they say,” says Lanier. “I love that we all love it.” 

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