Discussion Questions for this conversation are available, here.
Find Heather’s gorgeous memoir, Raising a Rare Girl: a Memoir.
Heather mentions that moms have been blamed for their kids for centuries. Read more about the New Science of Blaming Moms.
Thomas Armstrong came up with the theory of petal deficit to explain that there is no normal brain. This article by Armstrong explains the theory well. The article ends with this moving and important line: “How absurd it would be to label a calla lily as having ‘petal deficit disorder’ or to diagnose a person from Holland as suffering from ‘altitude deprivation syndrome.’ There is no normal flower or culture. Similarly, we ought to accept the fact that there is no normal brain or mind.”
Kate Bowler: Hi, I’m Kate Bowler, and this is Everything Happens. Look, the world loves us when we are good, better, best. But this is a podcast for when you want to stop feeling guilty that you’re not living your best life now. We’re not always having an eat, pray, love experience. I used to have my own delusion of living my best life now. I’m a Duke professor, wine and cheese enthusiast, wife and mom. Instagram gold. Then I was diagnosed with stage four cancer. That was four years ago and I’m still here. And now I get it. Life is a chronic condition. The self-help and wellness industry will try to tell you that you can always fix your life. Eat this and you won’t get sick. Lose this weight and you’ll never be lonely. Believe with your whole heart and God will provide. Keep this attitude and the money is yours. But I’m here to look into your gorgeous eyes and say, hey, there are some things you can fix and some things you can’t. And it’s OK that life isn’t always better. We can find beauty and meaning and truth, but there’s no cure to being human. So let’s be friends on that journey. Let’s be human together.
Kate Bowler: We all long for a predictable future that bends toward our hopes and dreams, especially when it comes to our kids. Even if we can’t follow or afford them, we know the rules. No junk food. Limit screentime. get them into the right preschool. Join the summer sports league. Get them an S.A.T. tutor. Save for college. That’s the equation for the perfect kid, apparently. But what about when our lives are undone by a diagnosis, an accident, infertility, divorce? What happens when our kids and our lives as a whole don’t follow the trajectory we thought they should? Today, my guest is the gorgeous essayist, memoirist and poet Heather Lanier. A graduate of Ohio State University’s MFA program, she’s now an assistant professor of creative nonfiction at Rowan University. And if you haven’t, go watch her TEDtalk. It’s perfect. She’s the author of a beautiful memoir, Raising a Rare Girl, where she tells the story of her daughter, Fiona, who was diagnosed with a rare genetic syndrome. Heather, what a gift to be talking with you today.
Heather Lanier: Thank you. It’s a huge gift to be talking to you.
K.B.: I was pleasantly surprised to realize that your understanding of like the history of the prosperity, gospel and New Age spirituality goes right back to your childhood. So if you don’t mind, I’d love to start there.
H.L.: Yeah, I got to wear two religions. One for the first ten years and one for the second. So for like eight years, I was raised Baptist and learned some solid atonement theory. But but my family changed patriarchs. And so we also changed religions at that time. So my mother married my step father and he was more new age guy and he was an Episcopalian, technically. But but they both kind of started subscribing to this idea that that your thoughts make things to put it in, like the short language. So, for instance, like there was the ceiling fan spinning above me in my bedroom and as a child, and it was sort of a violent ceiling fan. Like it sort of shook around and I thought, like, this thing is going to fall off and cut me. And I told my parents that. And their response was like, well, if you think these things, you can make them happen.
H.L.: But there was this real sense of like, you can heal yourself through your mind and through your emotions. Like you can be the like the captain of your body through your head and heart.
H.L.: And I had pretty much shed that theory by the time my stepfather died because he died. So, you know, like, he he got cancer. And I think some of those theories kind of ran dead end for him, you know, like he was still dying of cancer.
K.B.: Yeah. I’m a huge fan of, like, just understanding the scope of cultural scripts. And you just think so clearly about that. And I just for like my own experience, when I wonder, like when I got sick, why did I blame myself? Well, you know, look, I know it feels kind of embarrassing. I have a pretty sophisticated set of beliefs, I hope, about how cancer works. And then when I think of the wide range of people from the chiropractor I saw who was giving you one set of explanations to the preachers I was listening to on Sunday to the nurse, that right before I was wheeled into my last procedure said must have been something you ate. When we get the same message in so many varieties across a whole series of experts, like it’s not, I just want to reiterate, like it’s not strange then that we come away with these beliefs. Like that you were supposed to have like the you know, myth of the super baby and like that you’re supposed to be like the best pregnant person. And it’s hard to disentangle ourselves from these big comprehensive stories.
K.B.: But these beliefs unraveled when you and your husband, Justin, started a family. You had Fiona, and at first everything seemed normal until doctors and nurses started getting a bit concerned. What happened?
H.L.: She was four pounds, twelve ounces born at term, which is really outside the bell curve, like outside of anyone’s understanding of normal, which makes everyone freak out. But they kept us longer because she was so small, even though she presented zero health concerns, you know, all her blood sugars fine. And her heart is good. And, you know, things seem we can’t find anything, quote, wrong. We cannot find a reason for this smallness. It should be like a helpful reminder that like something there could be an or something to pay attention to medically. But though the message we got from nurses to doctors was like, this baby is wrong, like this baby is wrong. There was not the celebratory feeling we got when I had my second child.
K.B.: Yeah. I do think, like when you have a backdrop like yours, there’s just this this like I’m using ping pongy hands right now, but like it’s the double edgedness of our positive thinking culture that it’s so easy to enjoy the empowerment that, like, you can do it, lean into all the things that are available for you to try. Feels positive and like progress. But then the negative side is so unbelievably punitive. That, like, we’re constantly reabsorbing the blame of accident. Like, just shear life.
H.L.: Yeah. So it’s the last day of supposedly being in the hospital and we’re trying to get out. My husband and I are like this place is broken.
H.L.: These people don’t understand that our child is a celebratory gift. So we need to bust out of this place. And like all that’s standing between our ability to bust out is this pediatrician who’s going to do a final check. And I didn’t know him yet. He was the other doctor, you know, so he comes in and he checks Fiona and she’s four pounds, 12 ounces.
K.B.: Yeah. Yeah.
H.L.: Well, he just kept asking, he asked me things like what was wrong with the placenta? What was the placenta like? Or what about the cord? And then he said, well, it’s either bad seed or bad soil. And I knew what he meant, even though I was like three days out of giving birth and super sleep deprived. He meant like your uterus Mom is bad soil or your body or whatever. I mean, another nurse had asked me the day before if I had done drugs, you know, while pregnant.
H.L.: So bad soil would be me and bad seed would be her. It would be her genes, which is like textbook eugenics, you know.
K.B.: Yes, that’s right. That’s right.
H.L.: And then I you know, I cried, I cried and we left and. And I carry that home with me.
H.L.: I didn’t carry it home like I am either bad seed or bad soil. I carried home the knowledge that that’s how people were viewing this new precious dewy skinned life. And that like to me, it was like this clear even though I was super sleep deprived, this clear understanding of what my work was, which was like, I am loving a baby that for some reason people tell me is wrong. And some of that work continues. All will probably continue as long as I’m a mom, you know, it’s not nearly as gutting because I you know, I’m not as tender and postpartum. But that was the work. So I drove home with that assignment. You know, you’re loving a child that people consider bad.
K.B.: Yeah. Yeah. Fiona is eventually diagnosed with this rare syndrome called Wolf Hirschhorn. So what does that mean?
H.L.: Yeah. So it means that she has a detectable deletion on the short arm of the fourth chromosome. It’s about 100 genes that she is missing. But people with Wolf Hirschhorn Syndrome can be missing different amounts of genetic material. Along this part of the fourth chromosome.
H.L.: It means that she belongs to a second family, like she belongs to the family of people who also share that genetic trait. It wasn’t inherited so it’s something that happens spontaneously.
H.L.: And and then I later learned that it can it happens to everybody, actually, like we all have teensy additions and subtractions to our genetic material. But they’re just so small that nobody notices. Right. But sometimes enough genetic material sticks, in the process of meiosis, like enough is stuck or missing or whatever that you’ll you can notice it in a person.
K.B.: I’m just wondering how you process that information, because I met a cancer statistician a few months ago and he, his name is Christian Tomasetti and he like studies, he just had some really brilliant thoughts that I’m not going to be capable of fully duplicating about how a different organs reproduce cells at different rates. And he thought, wow, I wonder if that’s related to the overall rates of which cancers are more prevalent. So if colon cells duplicate faster, maybe there are more incidence of colon cancer. What an interesting thought. And he went and mapped it and it turned out that that was true and it helped frame how people understand. So it’s not just like colon cancer, it must be something you ate. It’s like, well, colon cells duplicate a heck of a lot. Therefore, there’s going to be more colon cancer. And when he looked at me and he’s like, so, you know, you are just sort of the end result of a series of random happenstance related to cell multiplication rates. That is not a sexy thing to say to somebody. But I felt great about. I did. I felt like explained without explaining me that there was no reason why something so terrible happened to me. But there was a reason why it might happen to someone. And that felt really intellectually satisfying.
H.L.: Yeah. So the first time we met with the geneticist, he said, like, nothing about this was something that you did, Mom. And I think they they must do that all the time. Many good doctors will do that with mothers I think when their babies have something, because there’s a really big history of blaming women like it wasn’t that long ago textbooks in the 50s, I think would blame mothers for Down’s syndrome and certainly for autism or having gay children. Like, there’s all kinds of maternal blame deep in the roots of modern history.
H.L.: But it turned out that I wasn’t, I still kind of carried this sense of, like, magical thinking, kind of like. Well, you know, I did take that one plane ride.
K.B.: Totally. Yeah.
H.L.: Even because you know why? Because I was raised above a really scary ceiling fan, you know, there’s just some things you can’t uproot.
K.B.: Yeah. Totally.
H.L.: So when she explained it, I was like, huh, so this just there’s a part of being human. It’s a part of living in a body. It’s a part like we need meiosis to be this messy. The way she explained it was the DNA chromatids, I think, stick together and rip apart. And she’s like, you can see how things would get left behind when they’re sticking together and ripping apart. And I said, yes, why? You know, why is it so messy? She said, because it creates the most diversity. And I was like, ha. So my kid’s just a celebration of diversity in any environment in which she’s not seen that way is not OK.
K.B.: Yes, that’s right.
H.L.: Any school environment that sees her as is as deficient because she’s not going to fit into your bell curve. That’s not an okay environment.
H.L.: Any doctor who looks at her and says and has this sort of deficit thinking is not an OK Doctor. And that thinking is all over the culture. So we have to do a lot of work.
K.B.: Yes. I love that you describe this as the work that like the moment you realize in your words, the world will not always see your beloved as good. And like the kind of like deprogramming we all have to do where we have to be more like that doctor who looked at her and said those absolutely, exactly right two words that seemed to change everything. Just said she’s perfect.
H.L.: Yeah. I draw a lot of inspiration from Genesis whenever I think of that part of the book. I always think about God is like this, what’s that Disney movie where like Mickey Mouse is dressed as a magician and he’s just like..
K.B.: Yes, Sorcerer’s Apprentice.
H.L.: Like, I just think of that, like, I think of a playful God who’s like Aardvarks, over there. You know? Narwhals hilarious. I think of that just like joful creation. And then I used as a kid, I thought that I thought the line was God declares each thing good. Like God is like and now you are good. But instead it’s God sees, God sees it is good.
K.B.: Yeah. Yeah.
H.L.: So it’s like the glasses of the divine, see every creature is good.
H.L.: And we don’t we don’t live in a world like that. We’re not raised in a world fully like that. But we have certainly glimpses of that and we can make corners of that and we can expand that lens.
K.B.: And yeah, that’s right. I felt that way when I felt the very strange, surrealness for me of like some of the more dramatic moments I’ve spent in the hospital is just how intensely I have felt God’s love. And I do sort of wonder if that’s just the thing that God does to show us that in our fragility, especially when our bodies don’t feel like they’re our own anymore or people don’t look at us and say like that is good. That’s the moment where God just like pops up to just like breathe love all over it. Because, like, we do need to be reminded, like, no, we were made in every way, like we’re just made for love and and made to be seen as good by each other. And like that reflecting doesn’t happen very often. But I am for it.
H.L.: Yeah, we’re on board.
K.B.: You talk so beautifully about all the ways that there are that we used to like chart kids, that we map them, we rate them, there’s growth charts and height charts and eye charts and reading tests. And you had to do this important work of divorcing yourself from this mode of mapping your daughter’s body against everybody else’s body.
H.L.: Yeah, there is this beautiful essay by Lennard J. Davis called Constructing Normalcy, the quote that that just like brought me to my knees and singing in praise with something like: the problem is not the disabled body, the problem is the way normalcy is constructed to make a problem of the disabled body.
H.L.: I think I lived that out. I think anybody in a minority body lives that out. I’m not in a minority body, but I like loving someone who is in a very minority body and seeing how often, someone would just sort of take a chart, a variety of kinds of charts, growth chart, weight chart, developmental gross motor chart, fine motor chart, speech chart, emotional chart and say, OK, she’s here on the chart. And then it would be it would always be months or years behind where she should be. Just because I loved her so deeply as any mother loves their kid, suddenly that seemed really disturbing. That we walk around with these charts and that measuring of a human’s performance is, is like the origins of that are with statistics and eugenics. So they’re not pretty.
K.B.: And you do such a lovely job. I love it when you say, like, she’s good, she’s whole and she’s holy. When I just like picture parental bubble wrap around a kid’s body, that seems like just the right bubble wrap.
H.L.: Yeah, well, thanks. I feel like Justin, I both developed a pretty strong sense of intuition about who was wearing those charts real heavily and would sort of look at Fiona and say, oh, not measuring it up at all. And then kinda like, just look at all the things she couldn’t do. I understand the relevance of developmental charts, you know. They help kids who need services get them, help kids who need extra support, get them. But we encountered some great therapists who who knew those charts like they what kids tend to do, doesn’t mean it’s what a kid is, quote, supposed to do. And then they would say, OK, well, kids tend to do this and what is this child doing? And then how can we build on what they are doing, for instance, like they’re lighting up at a at a song. They love music. How can we build on their love of music? The previous speech therapist had only ever told me, like, well, she doesn’t make G sounds, she doesn’t make B sounds. She basically doesn’t babble, which means she’s at a four month old level. And Fiona was like a year at that point. And we moved to Vermont and a new person came in and was just trying to get Fiona set up with more, you know, more supports, more therapy in the new state. And the therapists, like, instantly, she walks through the door, Fiona’s on the couch, Fiona I think, like claps or waves or something. And she’s like, oh, well, she’s a greeter. So, like, already was just like checking boxes of like, this is what she can do. She can say hi to people in her own way. And, you know, I’d said something like the woman and I were talking and she was kind of interviewing me about what Fiona does. And she said, you know, how does she communicate with you throughout the day? And I said, well, she doesn’t like use words or she doesn’t make these various sounds, because in my head, I’d already been carrying over this.
K.B.: Sure. Yeah.
H.L.: The seed of pressure from these Ohio therapists that, like my daughter, was not making G and B sounds. And she said, okay, well, how does she communicate? I said, well, she uses an M sound. And I just can tell what she wants sometimes, like based on the intonation of that. And she’s like, so she’s talking to you. And I was like she is talking to me, you know, it’s just like just finding people who validate capabilities. Who honor humanity and all its forms. Like who honor my daughter as a human in the form that she comes in. You can be aware of developmental charts and still keep them in only your back pocket.
K.B.: Yes. Yeah. Yeah. I’d love to talk about some of those distinctions, which I found really helpful about like capacity building versus deficit building.
H.L.: One of my favorite quotes is from, I forget who, but a special educator had said we don’t say that a calla lily has a pedal deficit syndrome. You’re like there’s just not enough petals on that flower. The same thing goes for kids. So, you know, though, so. I just think that attitude is important. Like what what is what is this child’s gifts and how can we build on them? And sure we can acknowledge, like, what they’re struggling with. But apparently this is the really it’s it’s like I am inspired and terrified by this fact. If you have a deficit lens and you’re an educator, you based on studies that I can’t cite right now, you’ll set lower goals than if have a capacity or strengths based approach. And so a person who looks at a person, who looks at a kid and says, well, here’s all that she can’t do. They’ll set lower goals. They’ll have lower achievement.
K.B.: Yeah, it sounds like you had to find a new way to parent like a form of parenting that was outside of the bell curve charts and outside of the meritocracy. What kind of progress has she made that might never have been thought possible?
H.L.: I always come up against, like, how to tell this story in a way that doesn’t fit.
K.B.: A progress narrative.
K.B.: No, I totally hear you.
H.L.: And also the the walking as victory narrative. The talking is victory narrative.
H.L.: It it happens to be that Fiona not just walks but runs quite fast lately and that it happens to be that she has all kinds of things to say and speaks in complete sentences, which is statistically for a person with Wolf Hirschhorn syndrome rarer, but it for me, it meant that raising her meant that I had to, that I really wanted to hold those goals very lightly.
H.L.: Because, of course, being able to walk makes things makes this world much more accessible to you, to anybody, because there’s steps everywhere.
H.L.: And I wanted to give her communication in whatever way she wanted to do it because like everyone has the right to communication. So we did work with an iPad app for a very long time, but she did not want that as much anymore. And she wanted speech. And that’s what she claimed for herself. So it was really important to me that we think about like we want to give our kid mobility and communication or expression, whether that looks like the way regular people, you know, typical people mobilize themselves and and communicate or not. I don’t care.
H.L.: So I had this real neutral sense of like how that was how those things were going to happen. So she had a wheelchair for a while that she did not want to use and did not use. Instead she like rolled around the preschool classroom while her three and four year old peers were walking. She rolled and kind of crawled and she had this very fascinating motor motor planning where she’d like, sit up, roll, sit up, roll and that’s how she would get across. Eventually she toddled. She like cruised, I guess they call it, like, grabbed onto things.
K.B.: Yeah, yeah, yeah, yeah.
H.L.: So it’s it’s been interesting because yeah, she walks and talks, but that’s not that’s not, you know, sort of the point, right.
K.B.: Yes. No, exactly. This is the work I’m hoping, that this project gets to do like at the Everything Happens project, because it’s really important that we find the language between good, better, best progress narrative, things have to have an arc or a ladder or else they’re not good. And then on the other side, the daily experience of people who don’t know how to frame agency. But they need something beautiful to happen that day.
H.L.: What do you mean by that? People who don’t know how to frame agency?
K.B.: You know, I get beautiful mail and I get beautiful messages that let me know, like from people from a range of situations where there are like severe limitations on what they can do. Like, maybe they’re caring for an elderly parent or they’ve got kids whose special needs are, you know, put it in like putting their house up for, you know, for remortgaging for the third time. And the hope for this community is that we explore the space between everything is possible and nothing is possible without forcing people into the idea that they have to be getting better or else they’re getting worse. And like, that is a tricky space. I tried hard to say that I’m an anti self-help brand, but people were like, well, then are you just hopeless? No, no. It’s just like we find truth and beauty and goodness inside this space. But like so I really hear what you’re saying.
H.L.: But like, that’s why I’ve been so, I love listening to you when you do Instagram lives or anytime you speak because you somehow find that spot always where I’m like it is not hopeless, but it is not the despair of self-help, because honestly I find self-help sort of despairing. It’s like, you have all the control. That’s awful because it’s not true.
H.L.: And it feels horrible to have to try to carry that.
K.B.: Yeah. Everything you’re saying about parenting and loving the beauty and possibility in Fiona’s life just sounds exactly right to me. I’m just like struggling for the language because as parents you want your kid to it’s hard not to be a maximalist. It just is. Where you’re like, well, do the most and that’s better. Af it’s always, that’s the best thing. The best is the most. But like you’re always trying to figure out, like, how to. I’m just using, like, expandy hands right now. Like what is what is the most beautiful possibility we can realize inside this ecology? Like that is, that to me is what hope feels like. It just doesn’t always have to feel like you’re trying to push somebody up a hill that they maybe shouldn’t be pushed up.
H.L.: Reading disability scholars, following disabled people who who write about life in a wheelchair and the oppression that they faced, you know, are like the egregious treatment from doctors that they face because people think their lives aren’t worth living like all that was helpful and kind of like neutralizing neutralizing ability. So it was like it didn’t. And that’s I don’t know if other people need to do that or what, but for me to love her, well, I had to neutralize bipedal mobility, like, I just had to be like, okay, sure. Like that walking is helpful, but also not walking. There’s other ways of mobilizing. Kind of holding that those common expectations about what the human body should do. Holding all that lightly and realizing that I could stand in solidarity with with other minority bodies.
K.B.: Yeah, that makes sense. Like putting them on two separate tracks, one in which loving her and her particularity could mean. Seeing what is good and like really fighting for that understanding of that her body is good. Inherently, beautifully, wholly and good, that that could be different work than, say, the grief around parenting in a medically complicated situation or not having the experience as a parent that, you know, that we just imagine that will have. What do you say to people who are like your, like when you see the other person that’s the tired parent who, like, needs a word of encouragement? What do you tell them?
H.L.: Yeah, I think just acknowledging how hard things are is what I need to hear.
H.L.: Acknowledging what I’m being asked to bear socially or like structurally if like, we don’t have respite now that we moved and we certainly don’t in a pandemic.
K.B.: Yeah, that’s right.
H.L.: Just to acknowledge like this actually is a parenting situation where many states will provide us with 12 hours of one on one support. With that, the state acknowledges that this is hard and the school will teach one on one. You know, like if Fiona has a one on one aid, because I know she needs the support. So if you’re doing all of this on your own, it’s not possible to do well. And that’s actually really hard on my ego because I like to do things well.
H.L.: So I guess for me, I just take that as my work. The late father Thomas Keating was my husband’s spiritual director and he has some really great videos about contemplative life and Christian life. And the way he describes God is like God is once you decide to be on the spiritual path, God is is infinitely in support of that and is your friend all the way. So I consider the fact that I, I parent a kid who makes it really easy for me to, like, screw up or like not be able to rise amazingly to the challenge. Like, no one’s achieving amazing things here. That’s God being my infinite friend and being like, yep, it’s maybe achievements not actually the goal here, Heather. You know, maybe being awesome isn’t actually the point.
K.B.: Can we just like mail banners for everyones house that says no one is achieving amazing things here. It would be so fantastic. I would love that so much.
H.L.: I would, too.
K.B.: Permission granted. I think at the center of this conversation and of your work and your book and I think, like your witness would say, is like one of these great fears that we’re all carrying around, that if we’re vulnerable or fragile, that being dependent somehow means that we’re broken or we’re deficient. But I just I love the way you talk about parenting. And I’m loving Fiona as not coming from a place of brokenness, but from a place of seeing and loving, having a greater vision for our deep humanity, for the way that we can be somehow complete and lovely and gorgeous and holy. And that, I think I’d I just I would love that for everybody if they could feel the wholeness of what they were given.
H.L.: Mm hmm.
K.B.: Heather, you are a delight, and I am so grateful for the way that you have helped us, like, thicken up our language around the fear of not being whole. It’s like given me a lot of comfort to see the world from your vision.
H.L.: Oh, thank you. Well, your work gives me lots of comfort, too, so I’m glad that I could give back.
K.B.: When our lives don’t follow the trajectory we hoped, it feels like we’ve been handed a decline narrative. The diagnosis, the divorce, the job loss. The kid who doesn’t make progress. The never ending battle against our bodies through dieting or self-hatred or disease. It’s so much easier to say I’m off the paradigm. I, this cannot be good. But Heather is giving us permission to say we are not plotted on a growth chart. Our humanity is not being mapped against some ideal. We are not inherently and cellularly a problem. As Heather writes, it’s OK that these bodies we live in are not always the promises we’d wished for. Life is full beneath this cracked porcelain, inside this tender flesh. We may not find every joy in the limitations were stuck inside. Let’s be honest about that. Like, there is nothing in the world that makes me think, oh, new perspective. Cancer is great. But our gorgeous fragility is nothing to be ashamed of. Today, let’s let ourselves off the hook for not being magically better somehow. You found possibility inside this life of yours. And from where I’m sitting, that looks a lot like wholeness to me.
K.B.: This podcast wouldn’t be possible without the generosity of the Lilly Endowment. Huge thank you to my team. Jessica Richie, Keith Weston, Harriet Putman and J.J. Dickinson. OK, before I go, my team here at the Everything Happens project would love to learn more about you. Would you be willing to answer a few questions through a quick online survey? If so, head over to tinyurl.com/ehlistens. We’re so grateful for the gifts of this listening community and want to continue to bring you conversations and guests you’ll enjoy. Thanks so much. This is Everything Happens with me, Kate Bowler.