Heather Lanier, RAISING A RARE GIRL

Zibby Owens: Welcome, Heather. Thanks for coming on "Moms Don't Have Time to Read Books" to talk about Raising a Rare Girl, your amazing memoir.

Heather Lanier: Thanks for having me. I'm so thrilled to be here.

Zibby: Of course. For those who don't know, could you please give a quick little synopsis of what Raising a Rare Girl is about? Also, what inspired you to write this memoir?

Heather: It's about raising my daughter for the first five years or so of her life. She was born very, very small. That shocked everybody in the world, in the room, me. I had ventured to have this absolutely super healthy baby and did all the right things. I went overboard to do all the right things. She was incredibly tiny. At full term she was four pounds, twelve ounces. We eventually learned that she had this very rare chromosomal syndrome called Wolf-Hirschhorn syndrome where she has little deletion on one of her chromosomes, on the fourth chromosome. The book is about, a lot of it's devoted to the first year and the disorientation of learning about that diagnosis in the midst of parenting, the lack of normality in my life as -- parenting is really mapped by normal, a map of normal, like what the baby does and when the baby does it. Even when you can't find common ground at the playgroup about politics or jobs, you can usually find common ground on when your baby put something in his or her mouth. I just wasn't in that club at all. I wasn't in that club of typical development. My daughter had a lot of other things to teach me. The first year is a lot of processing that, feeling disoriented, feeling grief for the trajectory I thought that child would have. That takes up about half of the book. Then the other half of the book is devoted to life after, reorientation. What does it look like to advocate for her? What does it look like to be a good medical advocate, to encounter doctors who belittle her, to give her language and communication when her mouth wasn't capable of it at the time? That's the book.

Zibby: I couldn't believe the reactions, how greatly they differed among different doctors and people who so rude and so negative without, almost, regard for how you were feeling at all and then doctors who were sort of minimizing. I don't know how you go from all these different spectrums of advice. It's a lot.

Heather: We encountered a lot of different doctors. I had never had a condition that required me to show up for regular appointments. I went for an annual checkup. I saw more doctors with Fiona in her first several months than probably my whole life. What I learned really quickly was, get a second opinion should you ever need one. There just are so many different approaches. So much of someone's personality comes into play when they actually give you medical advice. I learned quite a bit about doctors and reading the room really quickly. The doctor that would come in and be enthusiastic about her and treat her like a kid, they were good doctors. They often gave us really good advice in the end too. The doctor that was troubled by her various ways that she was different, we didn't want to return to them.

Zibby: I can imagine. You captured so well how expecting moms try to do everything right and the pressure that we feel. I have four kids of my own. I had a twin pregnancy, so that was a whole nother thing. Just the pressure that we have on ourselves that if we eat this turkey instead of that turkey, what could happen to our child? Just the pressure in addition to the physical that moms are under to have these perfect pregnancies and therefore expect these perfect outcomes, I feel like you share this belief, but we cannot control anything. No matter how much you do all the right things in any part of life, it's all just kind of a hoax. [laughs]

Heather: Yes. I think there's a lot of illusion of control that's really put on contemporary motherhood. Sarah Menkedick's book, Ordinary Insanity, it just came out in April, it's about postpartum anxiety and depression, but it's about so much more. She writes a lot about the pressure that women feel to produce perfect children or the pressure that we feel to ensure that our kids are developing normally and also the combination of that as a natural thing and how that, it can be the perfect storm for anxiety. She writes a lot about anxiety and does all these interviews. I didn't have postpartum anxiety in any sort of clinical way. Sarah Menkedick's argument is that baseline motherhood is anxiety and that we've sort of accepted that as normal, and it's not. It's not. It shouldn't be okay that we're all feeling this sort of pressure to keep everybody perfect or suffering free or pain free. There's very little we can control.

Zibby: I did not even know postpartum anxiety was a thing until fairly recently. I was like, that's so funny. That's just life. How is that a thing? That's not even a medical term. You did such a good job too when you were in the hospital at the very beginning. They said that you were supposed to rest. You kind of even felt guilty for that despite just having had a child. You were like, I've done all these things. Now that's my one mandate. I've spit a child out of me, and now I can relax. Then of course, you quickly realize that you can't just rest. Now you also have to worry, which is something that people try to control. You're like, no, now I have to take this on because what's going on?

Heather: That was definitely communicated to me in the hospital. They literally wrote, what's your agenda for today? Rest. I was like, yes. Also, really? I've never rested. I'm better at resting now that I'm a mom, or at least trying to take an hour to be like, you need to do nothing. It was clear that they didn't mean that at all. They were so concerned about her size that they meant, if you want to breastfeed, we have to start getting you a lactation consultant. She has to be fed around the clock. There was a lot of stress on me. It was interesting even in my postpartum fog to read the cultural cues there. Rest, mom. Take care of yourself. Breastfeed your baby or she'll be doomed to live a non-breastfed life. Lots of pressure.

Zibby: Of course, you raise the issue that over time different groups of people have had different culturally accepted child standards in a way. In the olden days, they would send off babies with down syndrome to a home. They would say, don't have this child, or all these horrific things. What is really the meaning of a child? I feel like you looked into that from a sort of religious angle, a spiritual angle, medical angle. Who's to say a child has to be perfect according to these random set of standards that some people in society think is really important?

Heather: For sure. It was important to think about why we become parents in this book. I think the pressure to make children who are supercharged with health and wellness and resilience -- resilience is good, but the nonvulnerable human being, first of all, it's impossible to be nonvulnerable. Second, it's not the main reason we become parents, is to create this person that transcends us. At least, I don't think it's the reason we should become parents, is to make a little super baby or mini-me, I guess you'd call it, someone who climbs up the ladder even further than we were. At least from my experience, it felt like the reason that we become parents is just to be absolutely leveled. [laughter] Even if you have the typical kid, you will fail miserably at something in the course of it. Wow, it just levels you. It's so humbling. You always think you're going to be a certain kind of parent. Then you have the child you have. They require a different kind of parent, a different kind of parenting. They don't breastfeed or whatever it is. I wanted to bring that angle into the book. I wanted the book to not just be a story, but also to be some reflection and some essaying, as we would say. Luckily, my editor was great and allowed me to do that. I know some readers will think, I just want story, but I wanted there to be both.

Zibby: It didn't feel choppy in any way. It was all seamlessly integrated. Whatever you did, you did it well. You talked here about this moment where you were like, I didn't sign up for this, but look what I got. I feel like any parent in some way, shape, or form has said at some point, oh, my god, what do I have to deal with? You said, "Of course I signed up for it. Every parent does. When we venture to become parents, we sign up for the fragility of life. We sign up for the precariously vulnerability of being human. We just don't always know it," which is so key. I just had to read that quote because that was no nice.

Speaking of this religious aspect to your book and spirituality and everything, you talked a lot in the book about your relationship with your husband and how he was actually ordained during a time when you couldn't even be there and the fire alarm went off and all that and also been training to be a monk and how he can take ten minutes to make tea and you're like, what are you doing? You said you would've titled a memoir about your relationship Red Wine and Green Tea, which is so funny. Just tell me a little more about what it's like having that kind of influence. I do think in any stressful situation, whether it's something with your child or something in your life, the personality or temperament of who you choose as a partner is so key to how you get through it. Just tell me a little about that dynamic and how it's affected your parenting.

Heather: I want to create an environment where people can improve a lot. Every day at the end of the day, I think about, what could I do better tomorrow? My husband Justin is much more relaxed about that, particularly in parenting. That works out really well because we create this balance. When Fiona was really little, she was six months, the advice that we got constantly was, she needs to do more tummy time, more tummy time, more tummy time because it strengthens the baby's core. I was like, we have to do tummy time all the time. Eventually, I asked the early interventionist, "How much? Just give me a goal. I need a goal here so I that I can hit the goal and I can rest," which I'm not great at. Then she said, "Oh, there's really no amount of tummy time that's too much," which was the worst advice for me. Whereas my husband, he just didn't feel that same pressure. It doesn't mean that he didn't also integrate therapy, but he didn't have this sense of needing to do it and then taking all the joy out of it. He would find ways to make it fun. He would have her on his chest. He would just enjoy her. She would look up at him. He'd play music in the background, lots of reggae. It ended up being great for Fiona to have that balance because she had this very accepting relaxed person and this person who was more worried. That worry, I was the engine behind getting her language. It was me home with her and not being able to communicate with her as clearly as I wanted or as she wanted that made me think, we need to find more people. Justin was busy working. He was a priest. I think it's helpful to have two very different people in a kid's life. That's what happened in this case.

Zibby: I feel like I'm in your camp of personality types. I can never rest. I was on bed rest with my twins. I was like, no, I don't think so. How am I going to do this? What do you mean relax? I don't even allow myself to watch TV unless it's pouring rain. I have all these rules.

Heather: Me too, like don't eat dark chocolate in the morning, things like that.

Zibby: Yes, wait until the afternoon.

Heather: He'll just break those. What are you doing?

Zibby: I'm like, if I start this chocolate thing too early, the rest of the day, what's going to happen? [laughter] Forget it. The wheel's off the train. Also, with the advice that the OT therapist said about there's never enough tummy time, then you cannot accomplish it. If there's no end goal, then you can never cross it off the list. That's the worst thing too when you're trying to get things done.

Heather: That reminds me, he was really good at just saying, this person's advice or their influence in our lives isn't helpful. let's just cut that voice out. He didn't mean let's just cut [indiscernible] out, but he would be like, let's just sweep that away. I would still hear that voice. I don't know if this made it into the book, but I had this therapy session where the therapist pointed out a lot of things that Fiona wasn't doing well. By therapy, I mean physical therapy, gross/fine motor therapy. The therapist left. I leaned against the door and slid down the door and just sobbed. I felt like it was impossible to do a good job in this job of motherhood, which is what I mean when I say we're leveled. In this case, I was trying to get Fiona to make some gross motor gains. My husband said, "I noticed that when these people come --" They came every two weeks. By these people, I mean these particular interventionists. There are amazing early interventionists out there. The one we had was really stressing me out.

He said, "I noticed that she takes away your intuition. She's there, you start to doubt yourself. You start to listen more to outside voices." He's like, "You know what to do." It was really helpful to have him say too, just get rid of the voices. "If this person is causing you to second-guess yourself constantly, which is one of your most important tools as a mother, is the knowing, this deep inner knowing," he's like, "it's not worth it. We should just cut them out." That particular person he thought we could just not have them over. I still was like, no, we have to do what we can. It really did make me think the most important thing is that, at least in parenting and particularly parenting when there's no real clear map or other parents aren't doing what you're doing because their kids are very different than yours, that inner knowing is key. Anything that interrupts that, it's okay to get rid of that.

Zibby: That's good advice. I'm going to take your husband's advice. I have had many a door slide in tears myself. I feel like many parents have had that downward moment. You had another -- hold on, let me just flip to this quote. This was one of my favorite parts, this one particular moment because it really speaks to how none of us really know what's going on and why in the world, and so all we can do is go with what we have as information. Your mother -- was it your mother or your mother-in-law? Your mother, you said, "One morning during her devotional time with her Bible opened on the kitchen table, the prayer she offered was a tear-filled and desperate, why? As in, why did you give this child Wolf-Hirschhorn syndrome? The reply she heard was so striking and clear, so separate from herself that it stopped her straight. The voice said, you have no idea what I intend to do with this child. After that, my mother trusted the body my daughter had been given." I loved that. I read it out loud to my husband. I was like, this is it. This is the answer. You don't know. You don't know why. Maybe there's a bigger purpose to everything, for every struggle. Now I'm sounding ridiculous and all woo-woo, but I feel like with every struggle and with every challenge, maybe there's a reason why. Maybe there's not. Maybe some is just bad luck. I don't know. I just loved that part.

Heather: The why question is apparently one that Americans ask a lot. There was some famous Zen master who came to America to teach Zen. He was like, wow, these Americans ask why a lot. It is a question we like to ask. I think there's great freedom in just saying we don't know. Perhaps there is bigger reasons that we could never, ever fathom. I was just talking to my kids about this. We were reading a book about space. I'm reading this kids book about space facts. Every once in a while, I'd be like, listen to this, there's a hundred billion stars in our galaxy. There's billions of galaxies. I can't even fathom that. The human mind just can't fathom a lot beyond our world. Actually, just for writing purposes, I had my mom read that section. I asked her if she was okay with it. She actually tweaked the voice that she’d heard. She's like, "No, it wasn't quite that. It was this." Just in terms of the writing process, it was important for me to not to share other people's deep, personal, divine moments without actually getting their permission.

Zibby: Tell me more about the writing. You actually teach writing. You even had little tidbits in here about highlighting details and just little bits of advice sprinkled through for writing itself. Tell me about your whole approach to this book and how you tackled the project and what it was like to write it.

Heather: I was actually working on a book about my husband and I and our falling in love and the fact that he had been a monk and that I was a recovering Christian or recovering from Baptist faith. I was working on this book and also had Fiona. She was about a year old when I really wanted to write about what I was experiencing, encounters we had with doctors, what I was learning about myself, what it was like to parent someone totally different from what the baby book said, any sort of developmental book explained. I started writing a blog on the side. It was almost like I was cheating on the main manuscript, eking out these blog posts. I wrote blog posts at three in the morning while pumping milk. I wrote it a lot when Fiona was napping. All the while, I was working on this other book. I started writing sometimes longer essays about parenting a child with disabilities, maybe five or ten of those. Then eventually, I think it got to ninety-some blog posts and ten literary essays. I knew that eventually I would write a book about Fiona. I really just wanted to reach readers easily rather than got through the slow route of literary publishing.

After an essay called "SuperBabies Don't Cry," an editor and an agent contacted me. I think it was the same weekend. Those ended up being my agent and my editor the book. That book just sort of fell into place. My agent said -- I said, "I don't love writing book proposals. I like writing the book." The proposal I worry can kind of kill the book idea because you're sort of planning the thing that I don't really want to be planned. I like to find myself in the writing or discover things in the writing. She said, "I'll help you." She did. I wrote it really quickly to try to get it over with. I wrote the proposal. I wrote it from July to August. Then she submitted it to that one editor at Penguin Press in September, and we had a contract. That's how it unfolded. Then this other book that I was cheating on, I haven't looked at in a while. I need to open that back up and figure out -- likely, it will be different now given that it's five years past.

Zibby: Wow. When you did you proposal, though, you hadn’t written it, right? You had just written the blog posts and all the supporting materials?

Heather: Yeah, that really only got you to the actual book deal. Then what happened was I thought, well, I got so much writing done. Surely, this won't be that complicated because there's just all of this material. That summer that I wrote the proposal I spent reading through the blog posts and the essays that I'd written. Sometimes I had just been writing, also, in a Word document that was accumulating pages of experiences that I'd had. I was cleaning out my garage at the same time, or my basement. It felt the same. Going through the basement and all the discorded stuff in boxes felt the same as sorting through all of these different pieces of writing. It was because there was no narrative consistency in the voice. The person who was a mother to a one-year-old who’d just been diagnosed with Wolf-Hirschhorn syndrome seven months before, however long ago before, that person was very different from the person who had a six-year-old whose kid was in kindergarten. I'd fully accepted and embraced my daughter and learned so much. I had to figure out chronology and what was important. What was the voice going to be? That all took time. There are moments that I had written about in the blog that end up in the book, but under very different -- they all got recast in this voice with different emphasis. Everything got expanded too because I got the large space of a book rather than a little post.

Zibby: How long do you think the writing took?

Heather: They gave me fifteen months for the first draft. I made my deadline.

Zibby: Congratulations.

Heather: Then it was nine months of revision rounds. My editor, her assistant, and I did three rounds of revisions. Two years after the contract was signed, the book was accepted as done. Then we did fact-check, legal review, stuff like that, fine-tuning, copy editing. They spent from September to this past July getting it all ready and figuring out a book cover and things like that.

Zibby: Now I feel like the uncertainty that you write about in the book and things not going according to plan -- I'm sure I'm like the eight thousandth person to ask you this question, but of course this is now what every parent and every person is dealing with, with the pandemic and how life is just not on track in any way for anyone. What do we do with that information? Now I feel like you're so uniquely positioned to handle that challenge.

Heather: There is a sort of surrendering to uncertainty that I practiced in Fiona's first years. In the early months in the pandemic, I feel like things have shifted so much in some ways and shifted not at all in others, but I did get the same feeling that I had when Fiona was six months or whatever. I would get this quiet feeling in my heart or in my chest that was like, there's nothing that you can do. All you can do is just fall into this and pray or hope or trust that something will be caught here, that you will be caught, that you'll be okay. Okay doesn't mean everything will work out great, you'll keep the job, your kid will walk. It meant it will be a different kind of okay than you would perhaps like, but still okay. I got that feeling again in the first month or two of the pandemic. It was comforting because I thought, oh, I have been here before. I've been in a place where I don't know if my kid is going to walk. I don't know if she's going to talk. I don't know if she's going to live past two. What does that mean? How can I go forward? At the time, what it meant was you love the hell out of life. You take it all in as much as you can and love your daughter as best you can. That doesn't mean I don't need introverted time alone to journal or what have you. I think it's still a good lesson. When things are really uncertain, it brings us closer to the sense of what things really mean and what really matters. It's not fun or comfortable. I wouldn't wish it on anybody. I think it does click things into focus in a helpful way.

Zibby: I feel like you have a whole passage about this at the end. I circled it. I was like, meaning of life. [laughs] You were like, "The point of this human life, I believe, is love. And the ridiculous and brave and risky act of love turns my heart into taffy, stretches it across the broad spectrum of human feeling. My daughter has given me a thousand portraits of grief and a thousand portraits of joy. I hurt. I long. I exalt. I rejoice. Loving my daughter tenderizes me, makes me more human. And yes, my chest sometimes aches from this work, but the ache in my chest is a cousin of joy." It's so amazing. It's so beautiful. Oh, my gosh, your writing. I love your writing. It's as if we're talking, but it's more literary than that. You just want to sit down and be your friend. It's so evocative. I'm not being very articulate myself in describing your writing. I can't even speak. Then you had these little funny lines like vacationing while parenting is kind of like juggling while sleeping. That's perfect. That should be on a pillow that every parent should be given in the hospital. Every airline should have that. Let's just make these difficult situations humorous because what else can we do?

Heather: Yes, they can just give that instead of those baggies of formula.

Zibby: Right? Who needs those? Come on. Forget the bibs. We'll get bibs. Do you have any advice for aspiring authors?

Heather: I was just talking to a friend of mine who wants to tell her life story. She writes poems. She loves writing poems because she can get lost in them. They surprise her. Then she comes out on the other side and she didn't predict that she would go there. She loves that about poetry. She's really overwhelmed to write her life story. I gave her this advice. Maybe it's useful. Sometimes we need constraints to feel free. For her, I was thinking, you have this twenty years she wants to tell in this memoir. What if she gave herself the constraint of, she's going to write as many sections as it takes, but they're only going to be three hundred words? It sort of feels like a poem. Write three hundred words. Write your way into it. Maybe it's a scene. Maybe it's a reflection. Be surprised by it, but it has to be over in three hundred words. That's not necessarily a constraint that works for everybody. I do believe as a writer in the enabling constraints. As a poet, if I start getting sloppy or uninspired, I'll go back to meter. I go back iambic pentameter or whatever form. I'll try to write a huzzle [sp] or some kind of obscure form. It's helpful for me and I think a lot of writers to feel constrained in one way. Then it feels liberating in another. I like that. I like to play with that as a writer.

Zibby: That's great. You could do it with timeframes too. You can only write about one year of your life or make it happen over one day, things like that.

Heather: Yes. Sonya Huber, a friend of mine, has a book coming. It's apparently a nonfiction book about one day. Inside that day is all of this other stuff woven into it. Constraints can be helpful. External forms can be helpful that you borrow. That's one bit of advice.

Zibby: Awesome. Thank you, Heather. Thanks for your amazing book. Thanks for sharing your story. I know your mom said a voice told her that who knows what this child is intended to do. At the least, it changed my time reading this book and my time meeting you and getting to know you and your story and feeling less alone in my slide down my down into the tear land.

Heather: You're calling it a slide. Now I'm envisioning a playground slide. It seems fun now. We just slide down our doors.

Zibby: Yeah, we're all sliding together. It's a wild ride down the slide. It's not just a descent into depression. [laughs]

Heather: And you're not alone either, particularly now. Everyone's doing it.

Zibby: Everyone's doing it. You got to do it to be cool. Anyway, thank you. Thanks for coming on.

Heather: Thanks for having me.

Zibby: My pleasure. Bye.

Heather: Bye.