By Sarah Buttenwieser
@standshadows

Like many people awaiting a first baby, Heather Lanier tried hard to do all the “right” things during her pregnancy. Early however in Raising a Rare Girl, Lanier’s new memoir, she reckons with having given birth to a very tiny baby; Fiona isn’t nearly reaching “normal” on the charts in either height or weight. In addition Fiona has a genetic condition that requires specialists, monitoring, multiple interventions, and much uncertainty. This ultra-rare syndrome, Wolf-Hirschhorn, also called 4P-, means few medical specialists know how to help.

Overwhelmed by the constancy of caregiving Fiona requires, Lanier suffers a huge sense of isolation. “Not normal” seems to breed loneliness. Over time, she and her family find community, strong supports, and connections.

Lanier’s eloquent, honest memoir chronicles her experience of what happened when parenthood immediately veers from commonly held expectations, like babies being a certain size, to something else. It’s really a meditation about what unconditional love offers both recipient and giver.

Sarah Buttenwieser: I loved the way you embraced Fiona’s not being “normal,” in this book. You made this seem like something you did in stages, but also with great awareness of the gifts received by doing so.

Heather Lanier: You know, I think there are two camps. I was in the camp of being ready to throw out the yardstick of normal and made a pretty quick divorce from that yardstick.

Pre-pandemic times, when Fiona was smaller, we attended a playgroup for special needs kids at our local library, which was facilitated by a physical therapist. The physical therapist designed activities our kids could do, regardless of ability. I was so relieved that I didn’t have to oversee each activity. I got to chat with other moms. One mom was struggling because her child had just received an autism diagnosis. I think she wanted, or hoped, her child would grow out of it and the diagnosis made it clear that wasn’t a potential reality. I remember being so surprised at how differently we felt about this thing—having a child, who is considered not normal.

SB: You describe writing about things that happened to you in Word documents. I’m curious how you realized you were actually writing a book about Fiona and your parenthood experience?

HL: I was working on another book at the time. When Fiona was born, our reality overtook, along with other life circumstances that meant parenting became primarily my responsibility. I wrote these shorter pieces, and I began the blog, but I saw all of that as on the side of the book project. I’d write about beautiful moments and hard moments. More of the beautiful moments made it to the blog; there were things I wrote about because I needed to get them out, which I didn’t want to write about for an audience. I worked on some longer essays for publication.

When she was maybe about three, I began to envision that I could be writing a book. When I published the essay “Superbabies Don’t Cry,” within the same week, both an editor and an agent contacted me. I was so fortunate the agent worked with me on the book proposal. We submitted the proposal to that one editor first. Who said yes!

SB: How much did the material you had, from essays and snippets and blog posts, contribute to the book in final form?

HL: I guess I’d hoped it would be easy to write the book, because I had written so much material about parenting Fiona. It wasn’t so easy as the stitching together of blog posts. I had to write the whole book. There were small sections I could kind of lift up from what I’d written, though.

SB: Do you feel like you’re done writing about Fiona and special needs parenting or will you continue to do so?

HL: I think I will keep writing about these issues. It’s nice, now that she’s more independent—in non-pandemic times, at least—to have room for my mind to be occupied by other things, too. Still, being Fiona’s advocate will be part of my life forever, and I’m sure I’ll have more to say.

SB: I loved the way your husband, who is a very religious person—a priest and former monk—and a spiritual leader, appears at first as kind of a superhero of acceptance. He then becomes less heady and more like a sincere, exhausted parent surviving. I was captivated with how spirituality infused this book.

HL: Spirituality and religion brought us together. We met as college students in a religion class. Early on, I drunkenly declared my frustration with Christianity. The book I was working on before Fiona was born was a spiritual memoir, reflecting upon how I grew up and how I grappled with spirituality anew being married to Justin. My agent encouraged me to let some of that material and perspective into the book. What it means to be on a spiritual journey, to be on a religious journey studies of Buddhism and the Bible, these are all important not just in Justin’s life, but mine.

SB: Have people reached out to you since the book was published, and if so, how?

HL: I’ve gotten emails from special needs parents and also from adult children with special needs. People tell me what the book meant to them, how seen they felt. Often, they want to share their stories.

SB: How has the pandemic affected your sense of being part of a community?

HL: One thing I miss about everything being virtual is never getting to stand in a room and feel the collective experience of being amongst a community that shares this common experience. I was supposed to give the keynote at the 4P- conference, which would have felt very powerful to me. There’s a wide spectrum of experience, even amongst this group with this one thing in common, the missing part of one chromosome. But there are more commonalities than differences. Justin describes the dads of special needs kids to have “thrown out normality” and experiences them as “tender-hearted.” It’s really a beautiful thing, such an essence of what love and humanity are all about.

Sarah Buttenwieser’s work has appeared in Motherwell, as well as TueNight, What’s Up Moms, and other publications. She didn’t get halfway through Heather Lanier’s gorgeous book, which she read in just a couple of days, before texting friends that they had to read it.

You can buy a copy of Raising a Rare Girl here!

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