Whole and Holy

with Heather Lanier

What if your life hasn’t turned out like you thought it would? When writer Heather Lanier’s daughter, Fiona, was born with a rare genetic syndrome, she learned that the world will not always see her beloved as good. In this conversation, Kate and Heather discuss how it’s okay that we are not summed up on bell curves. Perhaps the bodies in which we dwell are whole enough.




Heather Lanier

Heather Lanier is a poet, essayist, teacher, and the author of a beautiful memoir, Raising a Rare Girl. She is a graduate of Ohio State University's MFA program and is now an assistant professor of creative nonfiction at Rowan University. Her essays and poems have been published in The Atlantic, The Sun, Salon, Brevity, Vela Magazine, and elsewhere. Her TED talk, “’Good’ and ‘Bad’ Are Incomplete Stories We Tell Ourselves,” has been viewed over two million times.

Show Notes

Watch Heather’s TedTalk.

Find Heather’s gorgeous memoir, Raising a Rare Girl: a Memoir.   Join Kate as she discusses Heather’s book in her book club!

You can also read Heather’s latest book of poetry about reckoning motherhood and religion, Psalms of Unknowing: Poems.

Read the New York Times beautiful review of Heather’s memoir entitled What Happens When Your Baby isn’t Who You Expected?

Read more about Wolf Hirschhorn Syndrome.

Heather mentions that moms have been blamed for their kids for centuries. Read more about the New Science of Blaming Moms.

Access Lennard Jay Davis’s essay Constructing Normalcy on Google Scholar, or buy it on Amazon in the Disability Studies Reader edited by Davis.

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.”

Discussion Questions

1. Writer Heather Lanier grew up with a mom and a step-dad who subscribed to the belief that “your thoughts make things.” Did you believe similarly growing up? What did your family put its faith in?

2.Heather’s daughter Fiona was born outside the bell curve of “normal.” The message discerned from doctors and nurses was “This baby is wrong.” When have you or someone you’ve loved been made to feel bad for not fitting the mold? How are you reclaiming what’s right about y/our humanity?

3. There’s a long history of the medical establishment blaming mothers for their children’s “deficits.” Do you see evidence of this kind of magical thinking in your life and community? What do you think is the remedy?

4. Fiona was eventually diagnosed with a rare syndrome caused by the deletion of genetic material. It’s a process, Heather says, that actually happens to all of us. Meiosis has to be this messy to create human diversity. How does this celebration of diversity allow you to see disability differently?

5. Using the book of Genesis as her inspiration, Heather understands our work as learning to see every creature as good. What do you see differently through this divine lens? Describe or draw the scene.

6. “The problem is not the disabled body. The problem is the way normalcy is constructed to make a problem of the disabled body.” These words from a beautiful essay by Leonard J. Davis called Constructing Normalcy helped Heather acknowledge the limits of growth charts to measure a human life. Where do you need to be freed from the “supposed to’s” so you can celebrate the “can do’s” in your own life?

7. Eventually, Fiona learned to walk and talk, neither of which were guarantees. However, Heather is careful not to frame this reality as a victory narrative. Instead, she uses the phrase, “It happens to be…” as a way of holding her daughter’s progress lightly. How might you play with the phrase “It happens to be…” in your own story?

8. We want to give our kids mobility and communication, Heather admits, but how exactly they claim those tools for themselves is less important to her. What do you know about the space between infinite possibility and human agency that Heather and Kate want to live in?

9. “No one’s achieving amazing things here” isn’t just a great would-be bumper sticker. It’s also an acknowledgement of the spiritual truth that being awesome may not be the point. What do you need permission not to be awesome at today?

10. Kate’s closing hope is that everyone could feel the wholeness of what they’ve been given. “We are not inherently and cellularly a problem,” she says. Where are you feeling the hope of wholeness in your own body?

Bonus: After listening to this week’s podcast, what part of Kate and Heather’s conversation resonated with you most? What insight will you carry with you?

Discussion Questions written by author, editor, and facilitator Erin S. Lane.


Kate Bowler: Oh, hello, I’m Kate Bowler, and this is Everything happens. And this week we are continuing to revisit the conversations I have cherished the most. 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 screen time. Get them into the right preschool always called like, Perfection Academy or Li’l Scholars with like a little apostrophe. Join the summer sports league. Get the SAT tutor for college. When they’re five, there’s just an 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, I want to go back to my conversation with the gorgeous essayist, memoirist, and poet Heather Lanier. She’s still an assistant professor of creative writing at Rowan University. You really should watch her TED talk. It’s, it’s… perfect. That’s, that’s what it is. And when we spoke, she had just released a beautiful memoir called Raising a Rare Girl, where she told the story of her daughter, Fiona, who was diagnosed with a rare genetic syndrome. And since then, Heather has also released a book of poetry that’s called Psalms of Unknowing. I love it. Heather, what a gift to be talking with you today.

Heather Lanier: Thank you. It’s a huge gift to be talking to you.

Kate: 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.

Heather: Yeah, I got 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 my family changed patriarchs, and so we also changed religions at that time. So my mother married my stepfather and he was more a 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 this ceiling fan spinning above me in my bedroom as a child, and, it was sort of a violent ceiling fan, like it sort of just shook around and I thought, like, this thing is gonna 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.

Kate: No.

Heather: 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 of your body through your head and heart. And I had pretty much shed that theory by the time my stepfather died, because he died. So, you know, 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.

Kate: 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? You know, it’s feels kind of embarrassing. I have a pretty sophisticated set of beliefs, I hope, about how cancer works. And but then when I think of the wide range of people from the chiropractor I saw, who was giving me 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 like I just want to reiterate like it’s it’s not strange then that we come away with these beliefs. Like 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.

Heather: Yes.

Kate: But these beliefs unraveled when you and your husband, Justin, started a family. You had Fiona, and at first everything seems normal until doctors and nurses started getting a bit concerned. What happened?

Heather: She was 4 pounds, 12oz born at term, which is really outside the bell curve. Like outside of anyone’s understanding of normal, which makes everyone freak out. Well, they kept us longer because she was so small, even though she presented zero health concerns, you know, they’re like all her blood sugars fine. And her heart is good. And, you know, things seem we can’t find anything wrong. We cannot find a reason for this smallness. It can, it should be like a helpful reminder that, like something could, there could be something to pay attention to, medically. But 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.

Kate: Yeah. I do think like when you have a backdrop like yours, there’s just this. There’s like, I’m using ping pong hands right now, but like, it’s the double edged-ness 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 we’re constantly re-absorbing the blame of accident like just sheer life.

Heather: Yeah. So it’s the last day of supposedly being in the hospital and we’re trying to get out because my husband and I are like, this place is broken. Yeah. 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 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 other, you know, other doctor. So he comes in and and he checks Fiona and she’s 4 pounds, 12oz. Well, he just kept asking, asked me things like was the placenta, what was wrong with the placenta or what was the placenta like or what what about the cord? And then he said, well, it’s either bad seed or bad soil. And I, you know, I knew what he meant, even though I was like three days out of giving birth, and super sleep deprived, she 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. So bad soil would be me and bad seed would be her. It would be her genes, which is like textbook eugenics, you know.

Kate: Yes. That’s right, that’s right.

Heather: And then I, you know, I cried, I cried and we left, and and I carried that home with me. 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 it was like this clear—even I was super sleep deprived—this clear understanding of what my work was, which was like, I’m loving a baby. That for some reason people tell me is wrong. And some of that work continues. I’ll it 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, which is helpful. But that was the work. So I drove home with that assignment. You know, you’re, you’re loving a child that people consider bad.

Kate: Yeah. Don’t go anywhere. We’ll be right back after a few words from our sponsors.

Kate: Fiona is eventually diagnosed with this rare syndrome called Wolf-Hirschhorn. So what does that mean?

Heather: 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, this part of the fourth chromosome. 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. 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, or in the process of meiosis, like enough is stuck or missing or whatever, that you’ll, you can notice it in a person.

Kate: I’m just wondering how you process that information, because I, I met, cancer statistician a few months ago, and he, his name is Christian Thomasetti, and he like studies… He just had some really brilliant thoughts that I’m not going to be capable of fully duplicating about how 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 incidences 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, oh, 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 it. 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.

Heather: Yeah. So the first time we met with that geneticist, he said, like, nothing about this was something that you did, mom. And I can’t think that they must they must do that, 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 like 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. But it turned out that, yeah, I wasn’t— I still kind of carried this sense of like magical thinking, kind of like, well, I did take that one plane ride.

Kate: Totally. Yeah.

Heather: Even because, you know what? Because, because I was raised above a really scary ceiling fan, you know, like, just there’s just some things you can’t uproot.

Kate: Yeah, totally.

Heather: So she when she explained it, I was like, “Huh. So this just is 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. ‘Cause the way she explained it was that these DNA chromatids, I think, like, 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? And she said, because it creates the most diversity. And then I was like, huh. So my kids’ just a celebration of diversity and any environment in which she’s not seen that way is not okay.

Kate: Yes. That’s right.

Heather: Any school environment that sees her as deficient because she’s not going to fit into your bell curve, that’s not an okay environment. Any doctor who looks at her and says, and has this sort of deficit thinking is not an okay doctor. And that thinking is all over the culture. So we have to do a lot of work.

Kate: 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 seem to change everything, just said, “She’s perfect.”

Heather: 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…

Kate: Yes, Sorcerer’s apprentice. Yeah.

Heather: 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, joyful creation. And then I used to, as a kid, I thought that I thought the line was, God declares each thing good, like God is like a now you are good. But instead it’s God sees, God sees. It is good.

Kate: Yeah, yeah.

Heather: So it’s like the the glasses of the divine see every creature is good. 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.

Kate: Yeah, that’s right. I don’t know. I felt that way when I felt, a very strange, surreal ness 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 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 don’t we do need to be reminded, like, no, we were 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.

Heather: Yeah. We’re on board.

Kate: We’re going to take a quick break. We’ll be right back.

Kate: You talk so beautifully about all the ways that there are, that we use 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.

Heather: Yeah. There is this beautiful essay by Leonard J. Davis called Constructing Normalcy. The quote that just, like, brought me to my knees and singing in praise was 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. I think I lived that out. I think anybody in a minority body lives that out. I’m not in a minority body, but like, loving someone who is in a very minority body. And seeing how often, yeah, 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, okay, she’s here on the chart. And, and it would be, it would always be months or years behind where she should be. Because I loved her so deeply, as any mother loves their kid, suddenly that seemed really disturbing that we have, that yeah, 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.

Kate: 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.

Heather: Yeah. Well, thanks. I feel like Justin and 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 kind of like, just look at all the things she couldn’t do. I understand the relevance of developmental charts, you know, they, they help kids who need services get them, help kids who need extra support, get them. But yeah, we encountered some great therapists who knew those charts, like they knew what kids tend to do, doesn’t mean it’s what a kid is quote “supposed” to do. And then they would say, okay, 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 then we moved to Vermont and a new person came in. I was just trying to get Fiona set up with more, you know, more supports, more therapy in the new state. And the therapist, like instantly, so she walks through the door. Fiona is on the couch. Fiona, I think like claps or waves or something. And the women’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, he seed of pressure from these Ohio therapists that, like, my daughter, was not making G and P sounds. And she said, okay, well, how does she communicate? And 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 who honor humanity in all its forms. Like, you 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 your own, in your back pocket.

Kate: Yes. Yeah, yeah, I’d love to talk about some of those distinctions, which I found really helpful about capacity building versus deficit building.

Heather: 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 petal deficit syndrome. You’re not like, oh, there’s just not enough petals on that flower. The same thing goes for kids. So, so, you know, I just I think that attitude is important. Like what, 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—and this is the really, 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 you have a capacity or strengths-based approach. And so a person who looks at a person, looks at a kid and says, well, here’s all that she can’t do, they’ll set lower goals. And they’ll have lower achievement.

Kate: 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?

Heather: I always come up against, like, how to tell this story in a way that doesn’t fit.

Kate: A progress narrative.

Heather: Yep.

Kate: No, I totally hear you.

Heather: And also the walking as victory narrative. The talking is victory narrative. 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 incomplete sentences, which is statistically for a person with Wolf-Hirschhorn syndrome rarer. But for me, it meant that raising her meant that I had, that I really wanted to hold those goals very lightly. Because of course, being able to walk makes things, makes this world much more accessible to you, to anybody, because there’s steps everywhere. 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. 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. She 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 planning where she like, sit up, roll, sit up, roll. And that’s how she got across. And then she toddled. She like cruised, I guess they call it, like, grabbed onto things.

Kate: Yeah yeah yeah yeah yeah.

Heather: So it’s it’s been, it’s interesting because. Yeah, she walks and talks but that’s not, that’s not you know, it’s not, it’s not the point. Right?

Kate: 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.

Heather: What do you mean by that, people who don’t know how to frame agency?

Kate: You know, I get beautiful mail and I get beautiful messages that let me know, like from 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 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 try hard to say that I’m an anti self-help brand, but people were like, well then are you just hopeless? Like, no, 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.

Heather: But like, that’s why I’ve been so, I love listening to you when you do Instagram Live 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 because it’s like, yeah, you have all the control. That’s awful, because it’s not true, and, it feels horrible to have to try to carry that.

Kate: 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 too… It’s hard not to be a maximalist. It just is. Where you’re like, well, do the most, and that’s better. As if 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 expand-y 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.

Heather: Reading, disability scholars, following, disabled people who who write about life in a wheelchair and the oppression that they faced, you know, and like the egregious treatment from doctors that they face because people think their lives aren’t worth living like, all that was helpful in kind of like neutralizing, neutralizing ability. So it’s like… And that’s I don’t know if other people need to do that or what, but for me not to love her, well, I had to neutralize bipedal mobility. Like, I just had to be like, okay, sure, 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 people with other minority bodies.

Kate: Mmhmm. 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 holy and good that that can be different work than, say, the grief around parenting in a medically complicated situation or not having the experience as a parent that you, you know, that we just imagine that will have. What do you say to people who are like, when you see the other person that’s the tired parent who, like, needs a word of encouragement. What do you tell them?

Heather: Yeah, I think just acknowledging how hard things are is what I need to hear. Acknowledging what I’m being asked to bear socially or like structurally, like, we don’t have respite now that we moved. Just to acknowledge, like, this actually is a situation, a parenting situation where many states will provide us with 12 hours of one one-on-one support. 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 aide 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. So I guess for me, I just take that as my work. The late Friar 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 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, it’s really easy for me to like, screw up or, or like, not be able to rise amazingly to the challenge. Like, no one’s achieving amazing things here. That’s that’s that’s God being my infinite friend and being like, yep, maybe achievement’s not actually the goal here, Heather. You know, maybe being awesome isn’t actually the point.

Kate: Oh my God, can we just, like, mail out banners for everyone’s house that says no one is achieving amazing things here? Yeah, it’d be so fantastic. I would love that so much.

Heather: I would too.

Kate: Permission granted. So great. I think at the center of this conversation and of your work in your book, and I think, like your witness, I would say, is like one of these great fears that we’re all carrying around that if we’re vulnerable or fragile, the 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, like 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 just I would love that for everybody if they could feel the wholeness of, of what they were given. 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 giving me a lot of comfort to see the world from your vision.

Heather: Oh thank you. Well, your work gives me lots of comfort too, so I’m glad that I could give back.

Kate: 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 and this cannot be good. I cannot be good in this scenario. But Heather gave us permission to say, look, we’re not all plotted on a growth chart. Our humanity is not being mapped against some ideal. We’re not inherently or cellularly a problem. As Heather writes, it’s okay 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. We’re stuck inside. And let us just be honest about that. There is nothing in the world that makes me think, oh great, a new perspective. Thank you. I didn’t realize cancer was actually just kind of a bonus feature instead. But our gorgeous fragility is also nothing to be ashamed of today. So 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. And also, hey, I just got the best update from Heather on how Fiona is doing. She’s now 13 years old and she’s doing great. She takes an adaptive dance class, has joined the Junior high chorus and is super into doing at-home workout videos. Like how adorable is that? To follow along on Heather and Fiona’s journey, find her online at @HeatherKLanier. We’ll have links to her website and books in the show notes of today’s episode. This podcast wouldn’t be possible without the generosity of the Lilly Endowment. Huge thank you to my team Jessica Ritchey, Keith Weston, Harriet Putman, and J.J. Dickinson. This is Everything Happens with me, Kate Bowler.

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