What is a meaningful life? Does thinking about disability change your answer? Heather Lanier, author of Raising a Rare Girl, talks with Amy Julia about her daughter’s diagnosis and subsequent reactions from medical professionals, parents’ expectations for their children, the gift of vulnerability, the power of language, and the truth that love is stronger than fear.
Heather Lanier “is a poet, essayist, teacher, and speaker. An assistant professor of creative writing at Rowan University, she is the author of the memoir, Raising a Rare Girl.”
On the Podcast:
Season 5 of the Love Is Stronger Than Fear podcast connects to themes in my newest book, To Be Made Well, releasing Spring 2022...you can pre-order here! Learn more about my writing and speaking at amyjuliabecker.com.
*A transcript of this episode will be available within one business day.
Note: This transcript is autogenerated using speech recognition software and does contain errors. Please check the corresponding audio before quoting in print.
Heather Lanier (5s):
Such a great gift to hear this is a genetic deletion, not a genetic defect. Once you call someone defective, once you talk about a birth defect, you're likening a human to an item on a factory line. It's a very post-industrial revolution way of thinking about a human person. Well, we're humans, we're not machines and we're not mistakes.
Amy Julia (33s):
Hi friends, I'm Amy, Julia Becker. And this is love is stronger than fear. A podcast about pursuing hope and healing in the midst of personal pain and social division. In this season, we are talking about all things, healing, personal healing, spiritual healing, social healing. We'll explore the role of faith and medicine and healing, the intersection of mind, body, and spirit. The way our personal experience of healing is wrapped up in our participation in a wider work of social healing. We'll talk about how healing fits into conversations about disability and so much more on that last point today's episode is my conversation with Heather linear author of the beautiful memoir, raising a rare girl.
Amy Julia (1m 16s):
I do get a chance in our conversation to gush a little bit about how excellent I think this book is, but I want to say it again right here at the top. Before we even dive into the conversation, Heather is a beautiful writer with a really important things to say, and she does all of that through honest, relatable stories about her life as a young mother and wife and a person of uncertain faith. Who's learning about love and disability and vulnerability and what it means to live a meaningful life. I'm so glad you're here and I'm so glad you'll get to hear from her today. I am so excited to be here today with Heather Lanier. She is the author of raising a rare girl, which I had the chance to read this summer.
Amy Julia (2m 0s):
And it is definitely my favorite book of the summer and probably longer than that. So I just want to recommend those of you who are readers out there. You want to find raising a rare girl. So Heather, thank you
Heather (2m 13s):
For being here. Thanks so much, Amy Julia, for having me,
Amy Julia (2m 17s):
I'm so excited to talk with you. And I had had a little chance. I feel like to get to know you, even though we've never met in person because I got to read your book, but that is not true, obviously for most of the people who are listening in. So I just want to start by asking you to share the outline of your story and then we'll dig into some of the details. Yeah, sure.
Heather (2m 38s):
Well, as I start in the book talking about, I got pregnant in my early thirties and, and, and really like did all the things that the pregnancy culture tells you to do to like try to make what I call a super baby. You know, I got kind of swept up in this, the sense that like I had to avoid all mercury at all costs of course, and like always microwave my lunch meats and things like that. So it's sorry, there was a ding. So I got very swept up in, in making a, what I call the super baby. My daughter was born really tiny and we didn't know why. And it was unexpected and her name is Fiona and she was four pounds, 12 ounces, which I later learned is just very, it was like, you know, four ounces shy of what they consider a normal span.
Heather (3m 27s):
So it's like if a baby's under five pounds, they are concerned. The doctors and midwives nurses were concerned. And three months later we learned that she has a doctor, looks at her and says, okay, there's enough markers here to indicate that maybe there is a genetic syndrome or an explanation for her tininess for her. She had, she struggled eating. And we eventually learned she had something called Wolf, her Shoreham syndrome, which is incredibly rare, one in 50,000 births. It occurs in, in that instance. And it's a genetic deletion. So on the short arm of the fourth chromosome, each chromosome has a short arm and a long arm.
Heather (4m 7s):
The, her, her short arm of the fourth chromosome has a little kind of spot that's that other people have that she doesn't. And that sort of expat explains a lot of different things about her. So she, we had a lot of unknowns in those early years. And a lot of that is what I write about in the book. All like navigating all the unknowns you have, most parents have certain expectations for their kids and about abilities to do certain things like, like chewing, you know, doing food and walking and talking. And, and all of that was thrown into question. So kids with Wilford horn syndrome, half of them do walk half of them.
Heather (4m 47s):
Don't half of them, less than half actually do speak, talk. So it was just a lot, there were a lot of, a lot of uncertainties. Yeah. And then as in the course of that year, while we were learning about Fiona and learning more about her diagnosis and really sitting with all those questions, I got to then sit with all the expectations I had about her life. What I thought her life would be, what I thought a meaningful life meant was and how that all got kind of flipped upside down in what I consider a really good way. You know? So I know some, some of the story absolutely.
Amy Julia (5m 24s):
And amen. I, I wrote a memoir now actually almost 10 years ago. And the subtitle of it is faith expectations and a little girl named penny because of having such a similar sense of, I didn't use the words creating a super baby, but, you know, yes, I'm going to do this right. And I'm going to follow every rule and there are charts and graphs, and I know how to do that and like get a good grade on the test and all of these things. And then I'm given a child who is essentially going to make me aware of expectations. I didn't even know. I had, like, I didn't know.
Amy Julia (6m 4s):
I expected her as you just said to chew and walk and talk like I just did. And then once I became aware of those expectations too, again, in a good way, call into question, all of them, especially the value that I placed on her humanity in relation to those expectations has changed significantly since she was. Yeah. We'll get to talk about more of that in a minute. I wanted to just pause and ask you two other things like one, can you tell us, just give a little bit of background on you, not outside of being Fiona's mom, but at the same time, you are in fully realized human being and passions and interests outside of motherhood.
Amy Julia (6m 49s):
And so, and that comes through in the book as well in this, I think kind of subtext of what does it mean to be a female and a mother and a thinker and a worker, you know, all of those things, fill us in a little bit about who you are
Heather (7m 1s):
In that way. Yeah. I'm a writer, I'm a pro. Now I work as a professor of creative writing in New Jersey while I was parenting for a number of the years of like the early years of parenting. I was adjuncting. So I was working part time while the kids were in the preschool hours, like squeezing class times into those like little three hour beds, looking back, I'm amazed that I was trying to juggle all of them.
Amy Julia (7m 25s):
I couldn't believe what you were like, do you have one scene where you're like pumping and pumping milk and also trying to be interviewed for a position with like this board table of men? And it's like, oh my gosh,
Heather (7m 39s):
We did attempt to, we were, we were, we attempted to nurse her in a Harold's chicken shack in Chicago. Fiona was like seven or eight months. And she was also starting to indicate it had her first seizure, which we knew it was likely for kids with wool first one syndrome. And then I had to try to nurse this baby who was feverish and was starting to really not want to nurse anymore. Yeah. In a Harold's chicken shack, which is a greasy place and a delicious greasy place for a nursing session. And that I would had to rush off in a black suit to an interview. So yeah, I was trying to maintain it. I mean, I've always been a teacher since, since I graduated college, I started teaching in Baltimore city and then was got studied, creative writing and poetry and creative non-fiction at Ohio state and then always loved teaching.
Heather (8m 26s):
I loved teaching people how to write, how to tell their stories. And I liked to write about my own life too. So yeah. I was always kind of writing while parenting, even if it was just journaling, you know, trying to figure out a way to make sense of this life.
Amy Julia (8m 40s):
Yeah. I hear you on that. And your skills as a writer come through, it's not your stories. Beautiful and interesting. Your thoughts are interesting, but you also actually have not actually, but you have a wonderful way with words that just makes the book all the more compelling. So the other thing I wanted to ask just, just kind of background is if you could just give us a sense of who Fiona is now and you know, it makes her beautiful and lovely to you and what challenges she faces as particular human
Heather (9m 11s):
Fiona is currently in a season of no way. That's a phrase that she's saying a lot. So I say it's time for lunch. No way. And you know, it's time to do this. No way
Amy Julia (9m 21s):
She's saying no, I don't want to. Or like, whoa, no
Heather (9m 25s):
Way. She's saying, she's saying, yeah, that's a good question right now. It's reading is no, I don't want to, I'll have to listen to see. It's not like I'm so excited, but it's like, it's dead pan. It's a dead pan joke. She delivers no way. I'm not doing it just now. I said, Fiona, stop disagreeing. And she said, I'm not disagreeing. So, you know, that's where we are right now. She's great. She's 10, which is wild. Yeah. I know books take a long time.
Amy Julia (9m 54s):
Patty was five when my book came out in its infancy. So yeah,
Heather (9m 59s):
Yeah, yeah. She's she? Yeah. She's 10 she's if you met her, you would, you would perceive her as probably much younger because she's smaller. She'll, she's just designed to be small. As I write about in the book, she's very verbal now she's very mobile. She runs now, all of which is, is, is great, but also not contingent on like it being a, you know, a great life. So we're grateful for it, but we, yeah, it's, it's just a part of who she is and she is she's in, she's going to move into fifth grade. So that's all just pretty mind boggling.
Amy Julia (10m 35s):
Yes, absolutely. Well, there's so much more we could say just on that, but I want to move into some of the thinking that I think you express in the book. And so this there's lots that I underlined and starred and put exclamation points by. But one of my very favorite, if not my favorite quotation from your book is when you push away vulnerability, you push away your humanity. And what I was thinking about is the ways in which your life, which I think aligns with my life in many ways, pre Fiona taught you not to be vulnerable. Yeah. And then how you've come to see vulnerability as like so essential to being human.
Heather (11m 18s):
Yeah, yeah. Yeah. That's such a good question. It's hard to capture in a podcast answer. I'll do my best. Yeah. I think that it was, there was this, I just had this like go just achiever mindset, you know? And even now, I mean, I was just like scrolling through Instagram today. Like a favorite person that I follow was sending this message. Like never give up, don't give up, never give up. And I think about that message, like in relationship to say like Simone Biles, who I'm so glad it was like, I am not, this is not the right time for me to be competing that I think we're being more generous with ourselves culturally in general, about when we know where our limits are and that there are limits to, to being human.
Heather (12m 3s):
You know, that there are, there are, there are barriers. There are we, our bodies fail us, we get diagnoses. And none of that means that we're bad or wrong. And it's just, it's actually just a part of being human. And it's such, it's such an important part. I think of being human because it teaches us so much. It's also just an escapable. So I think with Fiona was I had done sort of everything I could to make a baby who wouldn't experience the precarity. Like the very thing that life is, is like the thing I was trying to like, not give her, which is a paradox, like the pregnant woman, who's like care, just dating a life. And it's like, I will make the life of an armored fortress of, you know, it mortality it's not possible.
Heather (12m 51s):
And so then yeah, when Fiona was this child who was, was tiny and worrying and she didn't have any major diagnoses right away, but, but people were concerned. She clearly was not the robust baby that like the doctors were, would, would be comfortable with that. The doctors would actually would've probably congratulated me for, cause they didn't, you know, some of them didn't, there was a sense of like, this is concerning. What did you do? And I wrote about in the book, a nurse said like, did you do drugs while did you take drugs while you were pregnant? Which was such a face lap that's after, especially all the things I had done. I think for me, I just came really close to, I just got really intimate with the truth that we cannot escape this sense of precarity, the sense of fragility and that there is there's, there's something there to really move closer to.
Heather (13m 46s):
And I do think that a disability is, is a way of accessing that truth.
Amy Julia (13m 52s):
Well, and just that whole idea of vulnerability, I think the root word is the ability to be wounded. That sense of if I'm open enough to be wounded, I'm also open enough to be loved. And to me, I mean, similarly with penny, I came face to face with vulnerability, not just in her, but in myself in a way that I had ignored or denied or been able to shield for much of my adolescent and adult life. And on the one hand that was really scary and it meant confronting hurts and pains and you know, precarity in a way that I didn't want to have to. But I do think it also was that, you know, peeling back the armor means there's at least theoretically there, like there can be a lot of freedom and joy and promise and possibility in that space.
Amy Julia (14m 40s):
And I think that's what you also write about really beautifully. Sure. This is scary stuff, but there's also a possibility of opening your heart to a whole new way. Not just daughter, but the world. Yeah.
Heather (14m 56s):
Well it gives me this, it's this feeling of like, it's this feeling of like, oh, this is what I meant for. I don't mean like I meant to be Fiona's mother. I mean, we are meant to both be, have the possibility to be wounded and the great opportunity to love. Like that's actually, I think what we're meant for yeah.
Amy Julia (15m 13s):
Yeah. And to care for each other in our woundedness too. I mean, that's part of the, there's this hyper independence that I think was related to the ability to not be vulnerable. It's like, I can just protect myself, but vulnerability actually can open up love because we have to care for each other in our woundedness or even just in our limitations, like the can't do because we're humans and we can't do it all. Yeah. I want to go back to just what you were saying about the doctors would said congratulations with a different baby, right. And you, I think do a great job of just speaking to the way in which language frames reality and the narrative that the medical establishment was giving you.
Amy Julia (16m 0s):
And actually there were two different ones. The different therapists were giving you the different you, you have. These one example was having a resident who talked about Fiona having a genetic deletion rather than a genetic defect. And that, that was a really big difference. So this is you, right? This was that moment when he said that, I think it was a man who said that when I first experienced disability as a flexible reality bent and twisted by our notions of the body and by our assumptions about which bodies are worthy of life. And I just loved the idea of disability as a flexible reality, that has certainly been my experience as well. But I'd love to have you just speak to that a little bit, what you mean by flexible reality and how has that realization played out over the course of Fiona's life and your life as her
Heather (16m 48s):
Mom? Yeah, well, I, I, I, I write too and that, that's the, that's a moment where we met with a geneticist. The first time we met with the geneticist, he was kind of giving us the official face-to-face understanding of what Wolf Hirshhorn syndrome meant. And his delivery of that syndrome to me was much more fluid and possible rather than comparing to like what other, some other parents of kids with the same syndrome heard. So some of them heard this, they, the doctors gave them very definitive and negative portraits of who their children would become. It was like this child will never do XYZ this.
Heather (17m 28s):
And it was also the sense of like also there was a lot of focus on what the child can do and how that can, or what we're will be able to do and what that means for their life. You know, like they won't be able to do this and therefore it'll be very difficult for you. And so that is a certain kind of reality that, that P you know, that that's like a, it's a, a portrait, it's a frame around the future, but that parent then has to live with a sense of, oh, the, the medical profession, the person who was telling me about my child is describing a future that is closed down and tragic. Right. And so I'm so grateful.
Heather (18m 10s):
I'm so grateful to any doctor or diagnosing doctor who can give people possibility who can give people neutrality in language to that, like in this case, yes. It was such a great gift to hear this is a genetic deletion, not a genetic defect. Once you call someone defective, once you talk about a birth defect, you're likening a human to an item on a factory line. I mean, it's a very, post-industrial revolution way of thinking about a human person. You know, like the cleft palate being the defector, you know, it's like, oh, we sent, send this machine back. We're we're humans. We're not machines. And, and we're not mistakes. And there's everything about us as an expression of, in my own spirituality and expression of the divine.
Heather (18m 54s):
And you don't have to, you don't, but you don't have to, you could be atheist and still like, still feel, see the inherent goodness of being human. So that's what I mean about the flexible reality that like there, it, depending on who's framing the story, it just, it, it explodes or shuts down so much. And the language is a way of indicating or conveying what that frame is. So,
Amy Julia (19m 22s):
And shaping the imagination about the future. And I need to do a great job of writing about this too. And you've even spoken to it already today. That sense that, okay, it is not, the piano is valuable because she is walking and talking at the same time, having a doctor come in and say, she's never going to walk. She's never going to talk. And her life is there for a miserable. And so is yours like, yeah. And so it, isn't the message of she's going to walk, she's going to talk like, it's not just a, we just need a cheerleader, but someone who says her life is valuable and meaningful, and you as a parent, get to participate in the unfolding development of that. However, she gets to express herself.
Heather (20m 4s):
And so well said, thank you.
Amy Julia (20m 6s):
Well, sure. I mean, again, I've thought about these things myself a lot, not just as it relates to penny, but as it relates to all sorts of people who are expressing themselves and the ways in which we were all given different bodies and different ways of being, which actually leads me to my next question. So one of the things that my husband Peter said early on in Penny's life was that disability was like a magnifying glass. Like it was like a way to see humanity more clearly because her vulnerabilities and limitations were more clear in the world's eyes than ours were. And yet it was like, oh, I have that too. Like, that's also true of me, but I couldn't see it until I could see it in her. And similarly her giftedness and beauty, and kind of the wonder that I experienced in knowing her well, gosh, what if that's true for me as well?
Amy Julia (20m 54s):
So we've kind of talked about disability as like a magnifying glass. And I was, and I think about this a lot because on the one hand, I feel like we have this experience that is very different than that of other families, right? Like through, out the milestones early on. And I knew the road to the children's hospital by heart and, you know, just had all sorts of things as a part of my life that none of my friends did in raising their typical kids. And on the other hand, I feel like it's really important to talk about the shared and common humanity of our children and ourselves. And you write about this and this kind of temptation to compare, and also almost like a temptation to put yourself in a different category.
Amy Julia (21m 39s):
What does it mean to be similar? What does it mean to be different? How do we think about those things? So I'm just curious to hear what you would say about yeah. How do you think about comparisons as a parent and, you know, kind of from person to person and child, to child within this framework of a different experience of our common humanity?
Heather (22m 4s):
Whew. I don't know. I think one thing I thought of, as you were asking that is this idea, and it might not be, this might not be connected, but I think it is this idea that I do think that there are, there are two kinds of parents. It seems like in, in my world, like when I meet other parents who have kids who have kids with some kind of neurodivergence or disability, there's the person, there's the parent who is still striving for normal for like what normal could look like or for, for passing on even, you know, like trying to catch the kid up or move them along to be in this sort of trajectory of, of what we think of as like the American dream life or the, whatever it is, the, the traditional grown up pattern or trajectory.
Heather (22m 52s):
And then there's the parent who who's totally, totally given that up often because of like, like they've had to, and I always find greater comfort in that the second company, you know, the person who's like, oh yeah, normal, we're done with that. I don't know what's going to happen. You know? And, and who lets go of this? The, the yard sticks that the culture uses for success. I think that's a little different than what you're saying, but I still find it that, that those categories are helpful. They, we, we don't have, we, we don't parent kids that are similar to typically developing kids in many ways. And yet they have all of the, they have all of the, the, like the rights to belong, the rights to community, you know, the rights for French, the need for friendship, the need for being, for who they are and how they're valuable in a community and offering what they have to value what they have.
Heather (23m 52s):
That's valuable, whether that's for Fiona, she went through a phase where she really liked pushing heavy objects, as heavy as she could. She's 30 pounds now pushing things around the room. So during like a meeting with the general ed, her general ed teacher, she, she watched, he watched him, she, he, the teacher watched you on a push, like chairs around and he was like, oh, that's really interesting. I've never seen her do that. Like what she loves, if you want, if you want furniture move, she loves to do it. Like, cause she was in an inclusive setting at that point. So how can she be able to yeah. To be like appreciated and valued for her? I think all of that, that is like an essential requirement for kids across, across abilities, you know?
Amy Julia (24m 34s):
Right, right. And that's where it goes back to that sense of commonality. Even if that's going to be expressed in a different way, because of her particular body and ability, it doesn't mean that there's not a common need to belong. Or as you said, this is taking a different tack, but I would love to speak a little bit about the spirituality that you express in the book. And it seems, it's really an interesting story because you have this pretty broad experience at least within Christianity, right. In terms of both more conservative or fundamentalist evangelical background, as well as being a part of a progressive wing of the church and in different ways. And I'm wondering if you can just share a little bit of your story there, but also how Fiona's presence in your life has, you know, whether it's prompted questions or conclusions or, you know, thoughts, experiences, doubts, like how she's affected you when it comes to your spiritual
Heather (25m 31s):
Growth. I mean, Fiona, I always had a hard time. I got baptized late in life cause I was raised Baptist and I had the so, so they didn't baptize an infancy. So I had the freedom to walk away from the church and then return. And so I was baptized, I think I was 30 and in my like catechumen sessions, we read Genesis and there's this passage, you know, there's a part where humans are made in the image of God. And in my little group, people talked about how, how consoling that was for, you know, like how comforting it was to hear that we're all made in the image of God. And I didn't understand that at all.
Heather (26m 13s):
So this was like 13 years ago. I thought that that, that sounded like we assumed we were God, you know? And I was like, well, isn't this the very justification for a lot of the harm on the really wrong. Yeah. Yeah. And so it didn't, it didn't like comfort me the same way. Other parts of Genesis that positive Genesis did, which I actually very briefly mentioned in the book. Like
Amy Julia (26m 35s):
I actually have, I have a quotation from front of me, so yeah. We'll get there. But
Heather (26m 41s):
Yeah, so, so it wasn't until I held Fiona and, and also held Fiona in the context of held this tiny baby in the context of other medical professionals indicating to me that she was from in their perspective, she was wrong. Like, you know, at one point I mentioned the doctor who says, why is this baby so small? It's either bad seed or bad soil. In other words, like she is a bad plant in his metaphor. And meanwhile, I'm holding this, this, this person who came from me, but not, you know, and that's when I got a much clear, she was my first child.
Heather (27m 22s):
I got a much like a deeper bone deep understanding of what it means to be made in the image of God, because it, it, she was so beloved and, and not just <inaudible> from me, but by me, but, but just seemed so beloved, you know, but I got, I just felt much closer to what what's that central Christian teaching. And since then, I mean, since, since being her mother, I've continued to, to just better re understand the gospels, what it means to love one another, you know? So, so all of that for me, I mean, I has like, as flourished, my Christian practice has flourished in tandem with being her mother.
Amy Julia (28m 5s):
Yeah. That's, that's really, I mean, you get a sense of that in the book. I just, and I think you do some really interesting theological work, honestly, in terms of there's a passage where you write about the God as a verb from the passage in Exodus, where God says, I am, that I am. And then the idea of like love being the nature of God's essence and love being what fuels the universe, right? Like if God is love and that is an action, that's a verb. What did that say about what it even means to be made in the image of God? I think that goes back to what you were saying before the capacity, the love is what makes us human and to be loved, right.
Amy Julia (28m 47s):
To give and receive love and that all ties together and ties in also. So that passage from Genesis one that you mentioned, so you're writing about the place where it says, God saw that it was good. And you say, you know, I always remember that as God declared that it was good, but it actually says God saw that it was good. And so then this is the quote I wrote down when we perceive with the lenses of the divine. We see goodness. So I would just want it to hone in on that for a minute. Like, what does it mean to perceive with the lenses of the divine, like to see with God's eyes and how has that, how has that worked out in your life obviously?
Amy Julia (29m 30s):
Well, I don't want to speak for you. I don't see with God's eyes all the time.
Heather (29m 34s):
No, no, no. I think that was partly in response to those doctors who were looking Fiona and saying, this is wrong. This doesn't measure this, this body of this baby doesn't measure up to our, to our charts. It doesn't fall in the bell curve the way we like that, that like comment, you know, if you're looking at a human life, like a brand new human life and you're going, oh, this is wrong. Something is off with your lens. You know? So I think it was a way for me to express yeah. To express the, the importance of kind of seeing that inherent goodness in, in all life and all humans.
Heather (30m 16s):
So another example, an example of this really mundane would be today. I was, had to, had to go to work for the first time. I'd actually go, I teach I duck, walk into a university room and sit with people, some, some wearing masks and some not, and have a discussion for the first time in a year and a half. So it was a little anxious cause I taught virtually all last year and Petra, my, my other daughter, who's two years younger than Fiona is in the room. And she's brainstorming about something and just curious about something and has all these, all of these ideas. And I'm all in my head and I can feel my body's tense and I'm trying to listen and can't listen, cause in 20 minutes, I need to leave for this, this first meeting in a year and a half in person.
Heather (31m 2s):
And I just sort of stopped myself and tried to get into my body and try to look at her face and try to see how, how beautiful she was. And she was one of the most beautiful things or not things, but beautiful people, beautiful encounters that in my life. And I'm all in my body, all anxious and like sort of distracted. So that's a moment where it's like, just look at your daughter's face, just look at her delight in her enthusiasm about this thing that she's inventing in her imagination. Can you see that this is good right now? This is good right now. So I think that's a moment it's a real simple, like mundane moment of seeing with trying to see what those lenses.
Amy Julia (31m 46s):
Yeah. And just the, I've been thinking a lot about the ordinariness of love and grace and we live in this world where there's so much, that is spectacular, you know, like the iPhone and you know, it's all glitzy and in candy, it's all like sugar rush. I mean not, yes,
Heather (32m 8s):
Actually. Yes. Dopamine hits all
Amy Julia (32m 10s):
Around tests and I've just been thinking about the need for the ordinary, including what is actually quite miraculous. I think ordinary love ordinary seeing ordinary ordinary people. And, and that's just a moment of like ordinary grace, right? There's nothing. I mean, I looked at my daughter that's and yet what was that? That was like going back to Genesis one, like, and I saw that she was good and that's just the world. Right. So that's beautiful. Well, I wanted to end just by asking you the name of this podcast is love is stronger than fear, which is a, I don't know, a phrase, I guess I landed on at some point in being Penny's mom and having so much fear, especially when it came to her future.
Amy Julia (32m 60s):
And I think I was told to have that fear that's part of that framing, right? That narrative framing of like, what's going to go wrong with your child, which for your typical kids and there's two. Right. But so it's like be afraid, be very afraid to be heard. And yet at the same time, and I think this is similar to you, like holding this baby and being like, do we get to
Heather (33m 21s):
See her? And so there
Amy Julia (33m 24s):
Was also just this sense of, but if I just love her right now, it's not that the fear is like absolutely gone, but the love is more powerful than that fear. Like the fear does retreat to the corners and the love does come out and I've started to think about how that might be possible. Not just in my experience with penny. I've seen that again and again and again, but how that might be possible in my experience of even a scary world. And so I just wonder about your own thoughts on choosing to love instead of choosing fear in how fear might prevent us from loving and how love might overcome fear.
Amy Julia (34m 4s):
Like any, any of those thoughts, which again, come up in your book.
Heather (34m 8s):
Yeah. That's all really good stuff. That's those are great questions. Well, first of all, I mean, one of the most what it's like the most common phrase that Jesus says other than like very truly I tell you is which he loves is, is being out afraid. Right? I mean, we're constantly, so what that tells us is that the human, the human person is, is pretty well wired to be afraid. And, and that there's, there's a, there is a desire from, from our source to calm that like there's, you know, to say, okay, can you set that down? I know that your adrenal glands are designed for some, you know, all that stuff, but being, being on a Frank, you're not afraid of.
Heather (34m 56s):
So I think about that, comfortingly I also think fear is an opportunity for us to practice faith. I've been thinking about that, you know, like an anxiety is anxiety, especially, you know, like, oh, I'm incredibly anxious about something. That's an opportunity to surrender, to trust to, to believe that yeah, that, that grace, it could be, it could be around the corner, but I, but man, yeah. Fear could absolutely eclipse love. And I felt that in my body when Fiona was early on, you know, some parents talk about like the euphoria of early motherhood and some don't regardless of how their children, you know, what kind of babies they have.
Heather (35m 38s):
But I definitely felt this, there was a lot of messaging about fear early on for her. I talked about like on the, on the whiteboard of the delivery room, the agenda for me was rest. That's what they wrote. Like what should you do today rest? But that was clearly not the, not the messaging I was getting from everyone who was really concerned about her size. There was a sense that like, I really needed to step up and be afraid about her tininess, but, but deep down there was still this, like I think that's why Fiona has really helped my Christian practice. Cause I've actually experienced the holy spirit much more than I think I ever have. I experienced this quiet voice that said, she's fine, she's fine.
Heather (36m 23s):
And it's very hard to trust that in, in the noise of be afraid, be very afraid and, and there's still, yeah. And there was also still legitimate, you know, people need nutrition and babies with Wolf Hirshhorn syndrome have a hard time receiving it. You know, there's still like some very practical things to tend to, but I have, I have found somewhere deep in the base of me of voice that that says this is okay or this is, you know, you're okay. This sort of comfort that, that I, I started experiencing in those dark, like late nights of nursing in her early months or lately be like first year and gosh, that really, yeah.
Heather (37m 8s):
That, that can get a person through that doesn't mean that most of the thoughts are peace and comfort in those times of tumble. It might just be you get a flash of that for a second on a, on a day, you know, a flash of, of, of peace and like a kind of an clearly steered ship and then everything around you is storm, but that's okay. That can, that can take you pretty far. I think
Amy Julia (37m 34s):
I agree. And I think even just thinking just how many times in the Bible, whether that's in the old Testament where someone protests and says, I can't do what you're asking me to, and God says, do not be afraid. I will be with you. And doesn't say, you're fantastic with you. And I think similarly, when Jesus keeps saying, they're not be afraid, do not be afraid. It's not because you can conquer the world as this independent superwoman. Right. It's actually, you're not be afraid I'm with you. And essentially I think going back to that capacity to love and if we can in our fits and starts and just that little glimpse or moment in the midst of the storms of every day, if we can begin to trust and love more than fear and not like, I mean, we have a capacity to love, but I think it's ultimately trusting in like the love that is underneath it all, as you were saying, and like tapping into that so that it can actually feel us and then equip us to be choosing love towards others.
Amy Julia (38m 42s):
That again, it goes back to making us more vulnerable. Yeah. So I think, you know, I've often said in this, but that yeah, penny broke my heart wide open, you know, that there was a breaking that had to happen, but then once it did, it was like, whoa, there's just a lot of love that. Not just I can give but much more so that I need and want to receive if I'm able, willing for it to that person. Yes,
Heather (39m 13s):
Yes. Yes. So well said,
Amy Julia (39m 15s):
Well, thanks. Well, Heather, thank you for your book. Thank you for your time. Thanks for having me. Yeah, absolutely. I will say I have, I will keep it and read it again because it's just really beautiful and there's a lot of truth contained in it and it's just wonderful to read that's I guess for me it's as much that sense of, you know, our kids do not have the same diagnoses, but that sense of there's a deeper truth running through this universe that we are in and it shows up in these vulnerable places. I think that's part of what I felt so connected to was just that sense of like, yeah, this is, she's just writing about truth and beauty and goodness and sure through the lens of being the mother of a child with an unexpected diagnosis and figuring out what it means to love in the midst of that.
Amy Julia (40m 13s):
But there's also something that is, there's like a uniqueness to your story, of course. And there's also a universal nature to it and really grateful to get to read it and talk to you. I enjoyed talking to, thank you. Thanks so much for listening to love is stronger than fear. We will be back in two weeks with a conversation with Dominic. Gillyard about his new book, subversive witness scriptures call to leverage privilege. Meanwhile, I would love to ask you to share this episode, subscribe to this podcast if you haven't already. And of course, it's always helpful to give it a rating or review wherever you find your podcasts, because that allows other people to find this show and benefit from these conversations.
Amy Julia (41m 3s):
Thank you. Also, Jake Hansen for editing Amber Barry, my social media coordinator, she does more to support this show than anyone will ever know. And I'm so grateful for her. And finally, as you go into your day today, I hope you will carry with you. The peace that comes from believing that love is stronger than fear.