I’ll be honest: this interview is personal for me. As the parent of an apraxic child, I have never really seen my experience mirrored in any of the parenting memoirs. They have all fallen flat with me, since most, if not nearly all, assume a child is non-disabled in every way. So when I first read about Heather K. Lanier’s Raising a Rare Girl, about motherhood and having a child with a rare syndrome (Wolf-Hirschhorn), my interest was piqued—although I was wary. Would this be another “inspiration porn” book? Would this make it all rainbows and sunshine and ignore the biases from doctors and the system?

I got the answer fairly quickly. My copy of Raising a Rare Girl is filled with Post-It Note flags and the inside is completely annotated. This memoir is an honest look at what parenting is like when your child has a rare diagnosis. It lays bare the attitudes we run into from pediatricians, from other parents, from family, and from the very therapists that are supposed to help us. But it is also about unlearning the ableism that creeps into our everyday lives and the ableism inherent in so much of the experiences of pregnancy and parenthood. It’s about raising a child.

I first read your essay about creating a SuperBaby when my own son was little, before his diagnosis of apraxia. And even then, it struck a chord. Imagine my surprise when I realized you were the same person who wrote that! Can you talk about your decision to write a book about your experience of parenting Fiona?

It’s so heartening to hear that “SuperBabies Don’t Cry” struck a chord, even before your son’s diagnosis. My hope for that essay—and for all my nonfiction—is that it transcends the specifics of my situation, even as I’m mining those specifics for insights. So I wanted that essay to be, not just about my daughter’s diagnosis, but about why any of us tries to be perfect, how it stems understandably from an avoidance of suffering, but how that suffering-avoidance results in ableism—in valuing some bodies over other bodies.

But “SuperBabies” only scratched the surface of the story. With Raising a Rare Girl, I got to go much deeper. I essentially wanted to tell the narrative version of Pema Chödrön’s When Things Fall Apart. In other words, when we are handed precisely what we never expected, it’s sometimes the ripest time for awe. It can bring us to our knees, and open us up to profound new ways of seeing.

Having Fiona was the best irony of my life. I tried so freaking hard to make some kind of “perfect” kid when I was pregnant, and then I gave birth to a child that nearly every medical professional looked at as “wrong.” And yet, my daughter was absolutely right—she was gorgeous and holy. So, learning to be her mother required me to interrogate the entire paradigm I’d been taught, about what makes a person “right” and what makes life worth living.

People overuse the word “journey.” As in, Oh, hey, making this crumpet was a real journey! But man, learning about Fiona’s diagnosis, perceiving my culture’s ableism, seeing how I’d internalized that ableism, and then exhuming it so I could celebrate and raise my daughter—all of that was indeed a journey. I wanted to reflect it back for readers in a book.

As my son gets older, I’m finding myself being more cautious about what I write regarding our lives. How do you navigate this?

Oh, yes. Me too. I don’t write much about Fiona anymore, not in the way I did when she was very young. When our kids are little, they’re literally tethered to our bodies. Their lives are so enmeshed with ours—and their identities are too. If we say, flat out, “Parents shouldn’t write about their kids,” we’re not only eliminating a large chunk of the human experience, we’re also silencing a whole lot of women, since women still do the bulk of child-rearing. And we need women writing about motherhood, just like we need mothers in political office.

So the question is then, How do we write about parenting ethically? When Fiona was very young, I developed my own idiosyncratic rules, which I articulated in a blog post here. Ultimately, all the rules came down to this: honor her humanity… which is, after all, the point of the book. I’m constantly thinking about the tropes of disability (“burden,” “angel,”) and asking if the writing challenges or bolsters them.

Today, my rules are even stricter. I still write sometimes about the circumstances of being Fiona’s parent—the IEP meetings, the advocacy—but not so much the details of her life. The book ends with Fiona walking down a public-school hallway, entering kindergarten, and to my mind, that also marks the end of my right to her story. She was in the public sphere now, with her own relationships and identity.

Do you have a writing routine? If so, what does that look like?

I work best in the morning. I try to schedule my day so that, before any other duties, I have at least an hour to write. I also try *not* to check email or otherwise dip a toe into the Internet world until after I’ve given that uninterrupted hour to the writing altar.

That’s the ideal version of my routine. And because of life, and snow days, and sick days, and work obligations, and poor discipline, and email addiction, and pandemics, and all the other things of life, I sometimes lose this routine, or hang onto it only once or twice a week. Sometimes I go weeks without writing. This is not good. I don’t mean morally. I mean emotionally. I start feeling like I can’t breathe. This leads me to desperately eke out an hour or two, here or there, of messy, imperfect, low-stakes writing—say, after the kids go to sleep, or in some absurdly early hour of the morning. These eked-out sessions don’t necessarily produce amazing work, but they remind me of writing’s necessity to my life. And then gradually I reestablish the morning routine… which will inevitably fall apart again in a few weeks or months. I believe in the ebb and flow of this process.

How do you think the creative community can support women, and mothers, especially? How might this look for parents of disabled kids? (I used identity-first language because the disabled community prefers this, from what I’ve read – please let me know if you prefer person-first).

Like you, I defer to the disability community, of which I’m only an accomplice. So yeah, “disabled kids” is often what I say.

The creative community can support women—and mothers especially—by first valuing mother-specific content. We’re still hearing stories from, say, a poet who goes to a reading, shares her poems about motherhood, and then gets dismissed by some dude after—a famous poet. Or I once heard a female NPR reporter say to a book reviewer, about a novel of female friendship, “Okay, that sounds like a great book for women, but what do you have for everyone else?” As though over half of the readership isn’t female. We all need to check our internalized sexism that tells us women’s work, and work about motherhood specifically, is less valuable than work by men.

Also, sure, women need to be lifting up other women. But it’s really men who need to do the heavy lifting here: amplifying women’s writing, reviewing books about motherhood, seeing motherhood as a topic for everyone. This goes doubly for work by women of color and other marginalized women.

The second thing we need is, of course, childcare. For example, artist’s residencies are completely inaccessible to parents if they don’t offer childcare, or a childcare stipend. Just like they’re inaccessible to disabled writers if they don’t have decent ADA compliance. Without childcare, you’re excluding anyone but the most privileged parent. The popular sentiment in advocacy is, “Don’t try to be a voice to the voiceless. Instead, pass the mic.” In many cases, we also need to pass the highly qualified childcare provider.

What are you struggling with, as a parent and as a writer, right now?

Boundaries. I’m sure it’s the same for many families. Where once we had several buildings to divide our activities, now almost everything is happening inside the walls of a single home. My work (which I’m grateful to have), the kids’ schooling, telemedicine appointments, physical therapy, speech therapy, IEP meetings, church service, Sunday school. Because everything is happening in one place, and because my husband and I are the sole caregiver/educators to our kids, one of whom is high-needs, I’ve found it very hard to carve out distinct time blocks for, well, anything. I’m pulled in too many directions, multi-tasking too much, and it’s affecting my attention span. I’m not doing much creative writing. But I’ll soon get desperate enough to establish a routine again. (See ebb and flow, above.)

I loved this quote, from page 71: “The resident did a powerful thing that day: through language and framing, he took my daughter’s life back from a culture that might label her as less-than, and he returned that life to us.” This is just one of many instances in the book where you show that language, and how we talk about disability, can break a parent. It can create presumptions about people, and biases. It can diminish, or it can make everything possible. What would you love to see happen around language and disability, in the literary world, parenting world, and beyond?

I would love to see American education take a strengths-based perspective when talking about children. Right now, special education is largely built on deficit thinking—which is made clear in its language. Special educators ask, “What’s wrong with this child? How can we make them more normal? How can we ‘catch them up.’” Many educators don’t even see why this approach is appalling.

Just yesterday, I met, via email, a new educator who was supposed to be working with my daughter. The educator’s first of only two questions in getting to know my kid was, “What’s your child’s greatest weakness?” Imagine a teacher asking that of a classroom of thirty typical kids. “Hello class, I’d like to know you better. What are you really terrible at?” It’s easy to perceive the issue with that when we talk about typical kids. Why isn’t it apparent when we’re talking about neurodiverse or disabled ones? Because there’s still a pervasive belief that disability is a problem in need of fixing.

I would love to see a strengths-based lens as the norm, in both attitude and language. I’d love to see special educators naturally and immediately inquire, “What are this child’s strengths? What do they love? How can we build on that? How can we help them thrive? What are the rich possibilities here?” I’d love it if every IEP meeting were built around those questions.

What books inspire you, and what are you reading right now?

I’m inspired by the essays of Leslie Jamison—they’re so good, it hurts. I adore Ross Gay’s The Book of Delights, which I recommend to everyone.

I’m rereading Saeed Jones’ gorgeous poetry collection, Prelude to Bruise. I’m also halfway through Sejal Shah’s beautiful essay collection, This is One Way To Dance. Despite my short attention lately (see above), I’m tearing through both—a credit to the authors.

What’s on the horizon for you?

I have another book to finish—about faith and doubt and falling in love with a monk. Step one, though, is to let the chaos of the moment drive me back into a writing schedule. And then find the delight in writing the next right thing.