‘I wanted to buy her time’: A mother looks back on her daughter’s terminal cancer

Transcript:

TERRY GROSS, HOST:

This is FRESH AIR. I’m Terry Gross. Parents want to protect their children, but how can you possibly protect your adolescent child from a terminal illness and inevitable death? My guest, Sarah Wildman, realized the inevitability after her older daughter, Orli, was enrolled in hospice. That was after three years of treatment for a rare form of liver cancer that had metastasized. Orli was 14 when she died in 2023. She endured several rounds of chemo, a liver transplant, two brain surgeries and a tumor that pinched her spine, leaving her unable to walk.

Wildman is a staff writer and editor for the opinion section of The New York Times, where she wrote several pieces during Orli’s illness and after her death, reflecting on what it was like to be a parent of a child facing mortality and the differences between how hospitals, hospice and Judaism deal with illness and death of a child compared to an adult. She described the expert medical care Orli received and the reluctance of some doctors and nurses to speak openly and realistically about what Orli was facing. She also wrote about the impact on her younger daughter, Hana, who was 9 when Orli passed away. Several years before Orli’s diagnosis, Wildman wrote the book “Paper Love” about her grandfather, who fled Austria after the Nazi invasion, and his girlfriend, who he left behind. No one in the family knew what happened to her, but the book describes how Wildman spent years tracking down the story. She is no stranger to writing about death and the importance of memory, whether it’s the memory of an individual child or genocide. Let’s start with a video that Wildman posted on Instagram when Orli was 12 in sixth grade, and Sarah interviewed her about what she was experiencing. It was 16 months after the initial diagnosis. She was in the middle of a second round of chemo, and as a result, was bald.

(SOUNDBITE OF ARCHIVED RECORDING)

ORLI: People just assume that I’m not confident with how I look. And I think that’s just really strange because I’m really happy with being bald. Like, I think I’m beautiful. And not everybody has to agree, but that’s what I think about myself. And I think a lot of people don’t see that as the norm, which it obviously isn’t. But people think it’s not beautiful, so they try to remind me over and over again, which is really nice. But I already know that, so I find it really strange because you wouldn’t tell, like, a normal person, you know, that they’re beautiful over and over and over again. And eventually, that makes me feel like, oh, you’re only saying that because you think I’m not. Does that make sense?

SARAH WILDMAN: Yeah, it does. It’s interesting. It’s like they’re somehow reinforcing its non-normativity by constantly telling you you’re beautiful as though you’d think it was strange. I mean, you happen to look really good with a bald head. I’m just going to say that (laughter). Do you feel like that regular life is just sort of continuing on and you’re still in this cancer space?

ORLI: Yes. I think it’s also because it was really, really big chemo. Like, when I got diagnosed for a whole month, like, everybody talked about it. Everybody tried to help. And then after that, a lot of people ditched me. I mean, I just think that it was – cancer helps me also see how real friends are. But just so many people went out without me and just forgot that I was going through all this stuff. I think that, yeah, it goes on without me. And sometimes I feel alone.

WILDMAN: Everybody feels like this year has been hard. We actually did that – you know, when you made your Reels the other day, you know, everybody felt that 2020 was really tough. And even the beginning of 2021 hasn’t been terribly easy. So does that make you feel like people get it more, what it feels like to be in isolation, or do you feel even more distanced?

ORLI: No.

WILDMAN: No.

ORLI: More distanced because I feel like I see so many people complaining. And then I’m like, well, you really have nothing to complain about. And then I realized that it’s just what they think is, like, the end of the world. But really, my world ended two years ago. It ended.

WILDMAN: That makes me sad, really, for you to say that. But, I mean…

ORLI: But, like, what they think is the world ending.

GROSS: So that was Sarah Wildman interviewing her late daughter, Orli, when Orli was 12 and in sixth grade going through her second round of chemo. Sarah Wildman, welcome to FRESH AIR. You write so beautifully about your daughter and your family. Thank you for coming to our show. Why did you want to do that interview with your daughter?

WILDMAN: I wanted to do that interview with her because I had actually just written a piece about how she had used TikTok despite my reluctance about how incredibly public a TikTok account could be and did become. But also, because I wanted people to see what it meant to be a kid in cancer care, a really articulate kid, a kid who was really grappling with it and thinking about it and considering it, especially at a time in the mid-pandemic where people were weary of lockdown, really feeling quite sorry for themselves. And what Orli does in that interview, in addition to sort of winning over everyone who watches it, is to sort of realign the way people are thinking about their own sadness, their own sense of isolation, and to show how she was so joyful, even during extremely hard experiences.

GROSS: Were you able to ask her questions because this was an interview that you wouldn’t otherwise have asked her, because it’s a more formal situation that kind of begs for a serious conversation that reveals things? So I’m wondering if the interview format gave you a kind of safe space to ask things that would be uncomfortable to just bring up at dinner.

WILDMAN: I think it did. It also allowed us a different kind of focus. When you’re chatting with your kid, you’re often multitasking. You’re making dinner, you’re driving, you’re getting them from one place to another. And a focus 30 or 40 minutes where you’re asking question after question, waiting for the answer, it’s sort of an unusual format for parent and child. It’s just not exactly how it goes, you know, outside of how is school, tell me something interesting, who did you sit with at lunch? And in this context, it also allowed us a total lack of distraction. A lot of the time, we have our phones on us. Something is dinging. You say, let me just quickly check this text. And both of us had to put aside all devices and just focus on this question.

GROSS: Did she have difficult questions for you over the years that you had trouble answering?

WILDMAN: Yes. She would often ask me, starting at the very beginning, had I ever experienced pain like she was experiencing. And at first, I said, well, you know, I’ve had two pregnancies and two rounds of childbirth, long labors that ended in C-sections. I thought I understood pain. But she was facing a kind of pain I realized I really had never encountered and I didn’t know anyone who had encountered, a physical pain. And she would sometimes ask me, what do you think I did to deserve this? And of course, that’s not an answerable question. There was nothing. And it really challenged us to look at this question of, is there such a thing as deserving pain? She would ask me about God, you know, both girls.

We had a very severe experience where Orli ended up in the ICU in Hawaii. We were on Make-A-Wish trip. It was brutal and terrifying. And Hana said, do you think God doesn’t love us? The kinds of questions that they asked during this really showed my hand, if you will. I was not able to really offer a concrete answer to any of these things. I would say, I don’t think that there is a God that is that activist in this way because there is so much pain around the world. And we’re experiencing this, but I don’t think it’s about God not loving us. You have to see divinity in the people who are helping us. I would try to turn it into thinking, how can we see good in the situation? But sometimes I was really stymied.

GROSS: Did you have your own questions about God and your child’s suffering?

WILDMAN: You know, at the very beginning – we have a very close relationship with our rabbis. And early on, one of them asked me, are you angry with God? And that’s a question that actually has come up again and again within the family. But for me, it wasn’t angry. It was more as my grandfather would’ve said, (imitating grandfather) where is God? Like, where is God? Can you even see God in this? How does it even – what does it mean to have come from a faith tradition and feel like you’ve done the right things, whatever that means, you know, whether it means religiously – because, you know, we actually have Shabbat. We keep a kosher house. You know, we follow many of the rules. We thought of ourselves as relatively good people.

I mean, what does it mean, you know, to face this question and have the whole world turned upside down? It felt like there wasn’t really a space for God within it, and you had to constantly search for what that looked like. I had to really see it in the divinity of people who went out of their way to help us and that weren’t afraid of us. It is very easy to be afraid of a family going through a catastrophe.

GROSS: Yeah, you describe in one of your pieces how sometimes when friends or neighbors would see you, they would just kind of break down into tears. How did that make you feel when friends saw you and just started to cry?

WILDMAN: It’s really difficult because sometimes I also felt that people wanted me to cry with them. And I cry a lot, but I can’t cry every time someone cries to me. And I sometimes felt that it was hard. I didn’t know who to comfort in that space. Sometimes what ends up happening if someone cries to me is that the roles reverse. I end up comforting them. I can’t say it’s OK because it’s not, right? And I think one of the really difficult things about facing a parent who has lost a child, facing anyone who’s lost anyone, but particularly in parental bereavement, is that you cannot make it better.

There is no betterment of this. There’s no it’s going to get better. She’s not coming back. What’s easier, though, is when people aren’t afraid of mentioning her name or reminding me of a story or telling me something I didn’t know that she’d told them, or that she’d done for them. It’s very hard when people cry to me, and I am a little bit at a loss as to where I fit in their grief.

GROSS: Well, let me reintroduce you here. If you’re just joining us, my guest is Sarah Wildman. She’s a writer and editor in the opinion section of The New York Times, where she wrote a series of articles about being the mother of an adolescent with terminal cancer and what it was like at the end 3 1/2 years after the diagnosis. Her daughter, Orli, died in 2023 at the age of 14. We’ll be right back. This is FRESH AIR.

(SOUNDBITE OF SOLANGE SONG, “WEARY”)

GROSS: This is FRESH AIR. Let’s get back to my interview with Sarah Wildman. She’s a writer and editor in the opinion section of The New York Times, where she wrote a series of articles about being the mother of an adolescent with terminal cancer and what it was like at the end, 3 1/2 years after the diagnosis. Her daughter’s name was Orli.

You write about how doctors and nurses tend to treat children who have terminal illness or who are at the end stage differently than they would treat an adult. What are some of the differences you observed?

WILDMAN: My sense is that the medical establishment sees the death of a child as a failure.

GROSS: Their failure, the doctor’s failure?

WILDMAN: As the doctor’s failure, yeah. I think there is a reluctance to face the idea that medicine has limits. Children’s hospitals really are always advertising that they will cure children. As a result, they don’t invest in psycho-emotional care for the end of life or the transition from curative care into maintenance care, and then finally end of life care, which means that families are left sort of reading tea leaves, if you will, you know, trying to figure out, between the lines of what is being said, what’s truly happening.

When I was told that Orli’s cancer was incurable, hearing incurable didn’t necessarily translate to me to and now she’ll die. I think it was very hard to absorb, but it also went somewhat unspoken. And part of the reason why it’s so hard to absorb is that you sort of have to hear it again and again because it feels so catastrophically impossible that you can’t fight it, especially because I had spent so much time researching. I’m a journalist. I sort of applied all those journalistic skills. I read every paper. I made myself into an expert in liver cancer, as did her dad, Ian. We thought we could outsmart cancer in some way. But it turned out the type of cancer that Orli had, hepatoblastoma, which is typically seen in toddlers, does not have a good cure rate for children who are older. They do very well under the age of 3. And then older children – Orli was 10 at diagnosis – they don’t tend to survive.

GROSS: You know how you were saying that, you know, terminal is the kind of thing you have to hear over and over before you’re capable of absorbing it because it’s so catastrophic? I mean, you write that conversations about death were discouraged in and out of the doctor’s office. Maybe that’s why, because they have to give you a small dose at a time before you’re ready to hear and comprehend the full reality.

WILDMAN: It’s hard to say. I think there are a couple different stages that I would’ve liked a different type of conversation. For example, in the spring of 2022, when Orli was feeling really good, she had a metastasy to her lung. And we asked if we could travel before she had another surgery. It was to be her third lung surgery, and the lung surgeries were very, very painful. And then we were beginning an experimental treatment. And at that time, actually, she was doing really well. And they were concerned to wait. But they didn’t say to us, well, there’s a new calculation here, which is to say, you’re facing a third metastacy. We don’t know if delaying surgery will affect our ability to get on top of this cancer. They weren’t yet talking about it being incurable. Instead, they said we should make sure we do everything we can. And what I would have preferred was to say let’s let her travel, let’s let her do something while she’s doing well, because I actually think they knew then the trajectory wasn’t great. And I think there’s a way to do that that still allows for hope. Orli’s cancer metastasized to her brain in June. And Ian asked providers, does this mean she’ll die? People really were reluctant to answer that question. And I was reluctant to hear it. So I think to your question, if they’d given it out in small doses, what they could have said was this is resetting the table. She won’t outrun this. We don’t know how much time we have. What are the things you want to do? If they had started to say that when she was still able to do more things, it would have been terrifying and I think it’s part of the reason why it’s really hard to have those conversations.

GROSS: You know, with hope and with optimism, it’s sometimes hard to tell when hope and optimism are really more like denial and not helpful. And it seems to me that’s one of the things you were grappling with.

WILDMAN: Yes. I think hope can be a form of denial. It can also be a motivating force. It can mean that you do seek out treatments that do give you days, months, maybe even years. I think that the hope is essential because cancer care is grueling. It can be demoralizing to face the consequences of cancer care. The cancer care itself comes with pain, it comes with nausea, it comes with, obviously, hair loss. It can come with all sorts of indignities.

GROSS: It must be so hard to watch as a parent.

WILDMAN: It was brutal because she really tried to live each moment in such an enormous way. She really, really loved living. And she would try to make life different in the hospital. I mean, she made every single nurse do TikTok dances with her. She would make the music therapists sing Lizzo and Olivia Rodrigo and Taylor Swift, and she would play Taylor Swift and Lizzo in every operating room, and she had many, many surgeries. She would force people again and again to see her not as a patient but as a person. And to see that she wasn’t able to do that as much as she would have liked outside of the hospital – for example, she loved acting. In the fall of 2022, she’d already had two brain surgeries, and she won a lead in “Twelfth Night,” and I have videos of her practicing for the part. But by late fall, she felt too tired to go to rehearsal. And It’s these indignities, as well, to not get these small pieces of joy that are really easy to take for granted and to not be able to give her that. I wanted to give her everything. I wanted to buy her time.

GROSS: If you’re just joining us, my guest is Sarah Wildman, she’s a writer and editor in the opinion section of The New York Times, where she wrote a series of articles about being the mother of her daughter Orli, who had terminal cancer. We’ll talk more after this short break. I’m Terry Gross, and this is FRESH AIR.

(SOUNDBITE OF SONG, “BIGGER THAN THE WHOLE SKY”)

TAYLOR SWIFT: (Singing) No words appear before me in the aftermath. Salt streams out my eyes and into my ears. Every single thing I touch becomes sick with sadness. ‘Cause it’s all over now, all out to sea. Goodbye, goodbye, goodbye. You were bigger than the whole sky. You were more than just a short time. And I’ve got a lot to pine about. I’ve got a lot to live without. I’m never going to meet what could’ve been, would’ve been, what should have been you. Could’ve been, would’ve been you.

GROSS: This is FRESH AIR. I’m Terry Gross. Let’s get back to my interview with Sarah Wildman. She’s a staff writer and editor for the opinion section of The New York Times, where she wrote several pieces during her older daughter Orli’s illness and after her death. Orli died of metastasized liver cancer in 2023 at the age of 14. Wildman’s writings reflect on what it was like to parent a child facing mortality, and the differences between how hospitals, hospice and Judaism deal with the illness and death of a child compared to an adult. She described the expert medical care Orli received and the reluctance of some doctors and nurses to speak openly and realistically about what Orli was facing. She also wrote about the impact of Orli’s ordeal and death on her younger daughter, Hana, who was 9 when Orli died.

When it was time for tough conversations about turning points in Orli’s health care, including, it’s time for hospice because there’s probably no cure, are those things you wanted to tell Orli yourself, or did you want, like, the professionals – the doctors, the nurses, the hospice care people – to tell her? Which did you think would be easier for her to digest?

WILDMAN: So I’m going to back up to before hospice on that one. When Orli first presented with a brain tumor in June of 2022, it was after a week of vomiting and terrible headaches. And her oncologist pulled me into the room and was really upset and said, it’s her brain. We had just gotten a scan. And then she led me back to Orli’s room and she walked away, and I said, are you going to come and tell me with her? Am I telling her alone?

And the doctor came in with me and said, Orli, it’s your brain. And Orli said, so I’m going to die. And the doctor said, you’re so mature. And I was shaking. I would have these physiological responses to really extreme moments where even if I was extremely calm, and I was always really calm for her sake – and, in fact, very early on, she had asked me not to cry in front of her. And so I really didn’t for a very long time. But sometimes I couldn’t control shaking.

And she was upset with me later that I didn’t contradict her, that I didn’t say, no, that’s not true. We’re going to be OK. I really didn’t know in that moment what to do. And to your question on hospice, hospice was introduced to us not as, she’s dying and she’s going on hospice. It was introduced because later that fall, after she’d actually bounced back, I mean, she had – after that brain surgery, after that first brain tumor, two weeks later she was on a surfboard. She read 15 books. She joined a pottery class. She traveled. She got a few weeks of life.

But that fall, she was in terrible pain, and in the hospital, they said to me, hospice in pediatrics is different for adults. In adults, you give up options of curative care. But for children, since Obamacare, you can have concurrent care. You can continue curative treatments. You can enter into drug trials. You won’t be giving anything up. You will just get some extra assistance at home. You’ll have home nursing.

But it turned out – first of all, where I live, there wasn’t a home nursing option within our hospice care insurance benefit, one. And two, when the hospice nurse called for the intake, I said, we’re starting a drug trial. You know, we’re not giving up concurrent care. We’ve agreed to talk to you because we need some home assistance. And she said, yes, but you know that they told me she has six months to live, right? And I said, no, you’re the first to tell me that.

GROSS: When you were wondering how much to try to talk with your daughter about the inevitability of death, did you try to feel her out and see, what is she ready to hear, and what is she not ready to hear? Did you wait for her to bring it up instead of you bringing it up?

WILDMAN: We often let her bring it up. And she actually had an idea for a podcast. It’s a little bit like what Shannen Doherty ended up doing herself, although this didn’t exist at the time. She told me she wanted to create a podcast, conversations with her until she died. They would have this sort of frisson of anxiety about it – you know? – how you wouldn’t know how long it would last. And so – and she was very, very funny. She once had a text argument with a friend, and the friend said, I think you’re being – you sound strange, and Orli texted, well, I’m literally dying. Because she was an adolescent, you know? And at the same time, she very much did not want to die.

And she would tell us sometimes she would cry about it. In one email that I read that she sent to someone that was not me, she said she’d learned how far the metastases had gone, and in that fall of 2022, the cancer spread further. And she said, no one is talking about a miracle. But there’s some small part of her, I think, that hoped we would. We did try three different last-ditch efforts of various drugs to slow things down. What the doctors would do is ask for her consent at this point in starting a new drug. And when the doctor said, are you sure you want to do this, are you sure you want to try yet another treatment, and she said – she really, like, yelled yes. Yes. You’ve given up on me. I think she didn’t want to give up, and yet, at the same time, she did want to grapple with it.

GROSS: Well, let me reintroduce you here. If you’re just joining us, my guest is Sarah Wildman, she’s a writer and editor in the opinion section of The New York Times, where she wrote a series of articles about being the mother of an adolescent with terminal cancer and what it was like at the end, 3 1/2 years after the diagnosis. Her daughter Orli died in 2023 at the age of 14. We’ll be right back. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. Let’s get back to my interview with Sarah Wildman. She’s a writer and editor in the opinion section of The New York Times, where she wrote a series of articles about being the mother of an adolescent with terminal cancer and what it was like at the end, 3 1/2 years after the diagnosis.

I’ve read so much about how family members grow closer when they know a member of the family is dying. You make every minute count. You love each other more. But unless it’s a sudden death or, you know, a few weeks before death, there’s still plenty of time to get on each other’s nerves and to argue. And you wrote that you still fought with Orli sometimes. What would you fight about? And I wonder how it would make you feel when you did fight about something.

WILDMAN: I mean, you know, she was 13, and then 14. We obviously disagreed about things. I mean, before things really took an extremely dark turn, and she was still trying to go to school, one day she emerged from her room and told me very proudly that instead of doing any schoolwork at all, she had watched every single Marvel movie back to back to back to catch herself up on the entire Marvel series. And I should feel extremely proud that she had reached this accomplishment.

(LAUGHTER)

WILDMAN: And I was little nonplussed, you know? She was very annoyed that I didn’t see this as the remarkable achievement of – you know, she’d barely slept. She’d read none of her assignments. And all she had done was catch herself up entirely and knew absolutely everything now about Marvel there was to know. She had this ability to do this. You know, she did this – I used to say she had a Talmudic relationship with Harry Potter, where she really started to read it against the grain and started to be very angry with Dumbledore for knowing all along that Harry would face the things he faced. It’s interesting, and she talked about the center on bat mitzvah that she struggled with Dumbledore as a savior character in the same way that she struggled with the idea of God because in her hospital room, no deity showed up.

And, you know, I think we all would argue, but I would try to make up with her immediately. I wouldn’t go to bed angry. I would apologize faster than probably I should. It really challenged parenting, and it still does because I didn’t know how to discipline in this space when all the rules seem to have been thrown out the window. I didn’t know how to put limits on things. How do you put limits on phone use when you have so little outside interaction? How do you say, you have to really focus on algebra, when you don’t know, actually, if any of it will matter? It’s really difficult. And I once said to her, well, isn’t it good that we have so much time together? We really get to bond. And she said, this is the time I’m supposed to be breaking away from you.

(LAUGHTER)

WILDMAN: She was hilarious and cynical and tenacious and would often really try to push the boundaries of permissibility when she could. You know, we had one perfect week and weekend right before her brain tumor. We went to New York. We were all extras on “Fleishman Is In Trouble,” the television series.

GROSS: Oh, seriously?

WILDMAN: Yes.

GROSS: How did you do that?

WILDMAN: I wrote to Taffy Akner, and I said, this is Orli’s dream, to be an actor, and she’s just gone through this third lung surgery, you know, one of many, many, many surgeries she’s had. What do you think? Could she be an extra? And she said, how about all four of you? And I ended up 9 hours on a television set in a bathing suit, which was not what I had planned.

(LAUGHTER)

WILDMAN: But…

GROSS: You both worked at the time, so you probably had some kind of connection to her.

WILDMAN: I did. Yes. I did.

GROSS: You did. Yeah.

WILDMAN: And I knew I knew her from the Times, and also, she had followed our story. And she was really happy to do something for Orli. But the thing that Orli did on that set was she left us and the extras, who were sort of corralled together, and she sat with the stars and the directors and watched the dailies and sort of insinuated herself among them. And no one was unhappy with it. It was such a gift. She liked to push boundaries as much as she possibly could. She liked to whenever she could seize a moment of autonomy.

GROSS: So, you know, Orli had her reasons to be angry at God. You had to, like, redefine for her and for you the meaning of God. What about your younger daughter, Hana, who was only 9 when Orli died? And that was, like, 3 1/2 years after her diagnosis. What did Hana make of this? And how did she interpret God, or was she angry at God?

WILDMAN: Hana was 6 when Orli was diagnosed and 9 when she died. And the week after the shiva, we borrowed a friend’s apartment in New York, and she started hysterically crying on the street one night. And we said, what’s happening for you now? What are you feeling? And she said she was so angry with God, she was worried she’d be punished. She was worried that there would be some consequence of this anger.

And we ended up calling up one of our rabbis and saying, let’s talk to Hana about this idea. And the rabbi said, Hana, we are all angry with God about losing Orli. And, in fact, in Jewish tradition, there’s a lot of anger with God. It’s not very strange to be angry with God. But sometimes Hana will get very upset. She really does not know how to have any relationship with God right now. And she’s very, very angry that God could have taken away someone as young, someone as vital, someone as important as Orli.

GROSS: You write about grieving and how the Jewish tradition is different when grieving for a parent than when grieving for a child. What is the difference?

WILDMAN: So Jewish mourning practices, many people know, you bury immediately. You have a weeklong shiva, period of time where people come to you, and you’re not supposed to cook or do anything. All that’s the same.

GROSS: Everybody is supposed to do it for you.

WILDMAN: And you’re not supposed to look in a mirror. I didn’t do that. I did look in the mirror. You aren’t supposed to make your own food. Everything is brought to you. And you sit. You’re supposed to really sit low, and every single day, the entire community is supposed to surround you. And then you emerge out of that and you have 30 day period of mourning, and then you emerge out of that. If you’re a child mourning a parent, you then have a whole following year where every single day for 11 months, you stand up and you say the Mourner’s Prayer, the Mourner’s Kaddish. If you lose a child, all the morning rituals end at 30 days. There’s nothing beyond it. There are no rules. If you lose a parent, you’re not supposed to attend a wedding, to go to a concert, you’re not supposed to attend concert, you’re not supposed to attend a joyful dinner. You’re not supposed to incur joy in some way. You’re not supposed to go out of your way to do something that’s particularly delightful unless it has to do with your work. As a parent who’s lost a child, you can do whatever you want. I found this completely destabilizing, I wanted them to tell me that I needed a policy of abnegation. I wanted them to tell me that you should be recognized as a mourner every day, because in truth, in the modern world, you are seen as a mourner. Someone who’s lost a child is seen differently, is sort of outside society all the time. And yet because these rules were set in antiquity when, unfortunately, child loss was far more prevalent, you had no rules. You could do whatever you wanted. And that felt like you were in free fall. And so we started to sort of change things a little bit. And, you know, one thing Orli did really early on after the first brain tumor and that – when she got back on a surf board and got back on a bike, one day she biked off from me. We had been gifted a house – a very, very tiny, beautiful little space on Martha’s Vineyard, and she biked away from me, and I found her sitting on a jetty, looking out to the sea with a book and a journal. And she said, this is what I needed. This is so good for my mental health. And it was just all this beauty, and she was able to take in that beauty. And I thought, OK, that’s what she tried to do. That’s what we’ll do in this first-year mourning period in free fall when we don’t have to do anything. We don’t have to say a prayer every day. We’re not recognized in the community in the same way. So we’re going to have to reset this and make our own path.

GROSS: Let’s take a short break here, and then we’ll talk some more. If you’re just joining us, my guess is Sarah Wildman, she’s a writer and editor at the opinion section of The New York Times, where she wrote a series of articles about being the mother of an adolescent with terminal cancer and what it was like at the end, 3 1/2 years after the diagnosis. We’ll be right back. This is FRESH AIR.

(SOUNDBITE OF GILAD HEKSELMAN’S “DO RE MI FA SOL”)

GROSS: This is FRESH AIR. Let’s get back to my interview with Sarah Wildman. She’s a writer and editor in the opinion section of The New York Times, where she wrote a series of articles about being the mother of an adolescent with terminal cancer and what it was like at the end, 3 1/2 years after the diagnosis. Her daughter’s name was Orli.

You continued to do your job at The New York Times, writing and editing for the opinion section. Did you feel this sense of guilt and inadequacy in both places – at home, feeling like you’re not doing a job at work and at work, feeling like you’re not home with Orli in the hours that she’s not in school and in the days when she couldn’t go to school? How did you handle that combination of having, you know, a stressful job and a stressful life at home that we’re both really time consuming?

WILDMAN: I mean, I think all parents feel, at some point, that they’re failing in both spaces. But strangely, for me, work was an enormous respite. For one, I leaned heavily into editing a lot of the time during Orli’s illness, and I would edit at crazy hours. You know, Ian and I would trade off every day at the hospital, 24 hours on, 24 hours off. But I could edit at 2 in the morning in the dark while she slept, and it would allow me to focus for an hour, two hours, five hours, in increments, away from the trauma of my immediate present. And I also think it gave me a different sense of the world’s vulnerabilities. I would often say this to people – after Orli died, that I understand loss differently. I understand pain differently in all forms. I think it made me – I hope it made me a better editor and a better writer. What’s really strange is that I sometimes feel that it has been some of the best writing I’ve ever done, which feels really awful in some strange way that it can – I write to write beautiful sentences and yet, in some way, I think it’s about honoring her with them. I want so much for people to know her. But yes, I think even now, when I’m working, I worry, am I giving enough to Hana? Hana needs a lot right now. Can I drop everything when she gets home for the day and pick it back up later at night? Do I just sacrifice, let’s say, sleep? Maybe I just won’t sleep as much. There is this sense that it’s impossible to do both, but I was in a really, really fortunate position in the most unfortunate of times to be working with a team of people who constantly said to me, if you need to take a break, take a break. If you want to step away and take a leave of absence, take a leave of absence. And that was very fortunate because it allowed me to be present and advocate for Orli in the hospital and outside of it in ways that I wouldn’t have been able to do in most other positions.

GROSS: At The New York Times as an opinion editor, are you focusing on editing people who have endured trauma or who are currently suffering or who are in the middle of a war? I mean, for example, you worked with Rachel Goldberg, the mother of Hersh Polin-Goldberg, who was abducted by Hamas on October 7, and in the attack, one of his arms was blown off. He was used by Hamas in a hostage video, and he died in captivity. Was Orli why you wanted to work with Rachel? Did you initiate that?

WILDMAN: Yes. In some way, yes. And I worked with – I was privileged to get to work with Rachel on both – two audio projects for The New York Times and edit her first essay for us. I met her across the airwaves the week of October 7. And what was remarkable to me was at the end of our conversation – and it didn’t make it into our audio production – was she said she was glad that it was me. She had read the Orli stories, and she was sorry for what I had been through. And it was really a remarkable moment of someone going through tremendous trauma being able to step outside themselves and then offer empathy outside of their space. I produced a number of the hostage stories that we ran, and I’ve also worked with Palestinians because I do think there is a commonality of loss and grief and pain that transcends conflict and to some degree is possibly one way out of it. Seeing our human connection feels, to me, one of the most important things that we can do right now. It sounds so cliched or, like, something that could go on a mug, but I actually really mean it.

I think it feels to me very important to hear the stories of these individuals. And yes, so yes, I am – I’ve worked on a number of these stories, in addition to right now, after this most recent inauguration, I’m working on stories of immigration, refugees, asylum seekers, and trying to look at this question of who are we as a nation? Are we a nation that welcomes in the huddled masses yearning to breathe free? Are we a nation that closes its doors? And I think all of this connects back to this question of what is our role to each other in the world? It goes back to your question of finding divinity. Do we have a responsibility to each other as human beings? What is that responsibility? How far does it go? How far can we take it?

GROSS: I have one last question for you and that is, where are you now in the process of mourning your daughter who died in March of 2023?

WILDMAN: You know, Terry, I think the thing to really know is that the loss of a child is not a one-time event – right? – it’s constant. You’re always – you sort of lose her again and again every day. You know, it’s every time you set the table. It’s in the way in which we all respond to the world and the idea of how people understand us or don’t understand us. It’s about this sense of, are we broken and how do we repair, understanding that the pieces don’t ever really quite fit the same way again because it’s the loss of both present and future? It shifts something about how you see the world, and it really challenges your optimism every day. She should have turned 16 on January 13, and Hana and I spent the weekend doing things we thought she would have done or would have liked. There are some days where I step outside and I want to cry my entire walk, and there are some days where something happens and it just makes me smile. When I spoke to your producer to prepare for this conversation, and I stopped the call, I looked at my phone and we had been speaking for 1 hour and 13 minutes, and Orli was born on January 13. And I sometimes see those moments as her.

GROSS: Sarah Wildman, I’m really grateful that you spoke to us. Thank you for sharing everything that you did.

WILDMAN: Thank you so much for having me on and letting me share a little bit of Orli’s story and mine.

GROSS: Sarah Wildman is a staff writer and editor for the New York Times opinion section where you can find her personal essays. Tomorrow on FRESH AIR our guest will be Grammy-winning pop star and actress Ariana Grande. She’s nominated for an Oscar for her role as Galinda in “Wicked.” She started acting on Broadway and TV when she was in her teens. I hope you’ll join us. To keep up with what’s on the show and get highlights of our interviews, follow us on Instagram at @nprfreshair.

(SOUNDBITE OF BILL EVANS’ “GARY’S THEME”)

GROSS: FRESH AIR’s executive producer is Danny Miller. Our managing producer is Sam Briger. Our technical director and engineer is Audrey Bentham. Our interviews and reviews are produced and edited by Phyllis Myers, Ann Marie Baldonato, Lauren Krenzel, Therese Madden, Monique Nazareth, Thea Chaloner, Susan Nyakundi and Anna Bauman. Our digital media producer is Molly Seavy-Nesper. Roberta Shorrock directs the show. Our cohost is Tonya Mosley. I’m Terry Gross.

(SOUNDBITE OF RHYTHM FUTURE QUARTET’S “IBERIAN SUNRISE”)