Good Life Project - Heather Harpham: Life and Death, Love and Family.

Episode Date: February 12, 2018

She wanted a family, he didn't. What happened next, neither saw coming.In this week's conversation, Heather Harpham takes us into her whirlwind romance with a writer that led to a seemingly endless series of unexpected turns. Heather always saw her life with children, but her then-boyfriend saw no room for a child. His life was devoted to his craft as a writer. Fate, however, brought them a daughter.The idea of bringing a child into the world, alone, cultivated emotions ranging from joy to trauma, and eventually cut deep personal divides between the two. Harpham's life was turned upside-down. But, when their daughter was born with a near-fatal illness, the small semblance that was left of Harpham's handle on normalcy was tossed out the window.In today's conversation, Heather shares her whirlwind romance turned harrowing story of life-and-death motherhood and evolving quest to redefine what family is and can be. This journey is also detailed in her memoir, Happiness: The Crooked Little Road to Semi-Ever After.-------------Have you discovered your Sparketype yet? Take the Sparketype Assessment™ now. IT’S FREE (https://sparketype.com/) and takes about 7-minutes to complete. At a minimum, it’ll open your eyes in a big way. It also just might change your life.If you enjoyed the show, please share it with a friend. Thank you to our super cool brand partners. If you like the show, please support them - they help make the podcast possible. Hosted on Acast. See acast.com/privacy for more information.

Poof! There was a little girl and she was beautiful. I went into that, you know, that inner dance of joy, that indescribable euphoria that new parents go into. And that lasted a very short time. Before we were interrupted with the news that they were worried about the baby and she needed some tests, and it wasn't really more than an hour after they took her to do testing that they came back and said, she's really in trouble. Her red cells are falling apart. She doesn't have enough.

So imagine for a moment you're a young woman coming out of school on the West Coast, moving to New York City to make it, to build your career, to study, to go deeper into building a life. And somewhere along the way, you fall in love with a guy and it's a wonderful mad love affair, except there's one really big difference in the way that you see what you want. You want a family and kids and you see that as your future. And he is deeply devoted to his craft and his career. And that includes no space for that. And then one day you get pregnant

and that sets in motion a whole new story between you. Well, that's what happened to this week's guest, Heather Harpum, who's also the author of a new memoir called Happiness that details this powerful journey, what happened as she ended up moving back cross-country and back home without him, and then giving birth to a beautiful baby girl and finding out shortly after that things were not okay

and that in fact things were quite dire. What unfolds from that moment forward and how she and he dealt with it and how eventually the family came to define themselves very differently in the world, that's where we go in today's conversation. I'm Jonathan Fields and this is Good Life Project. it even more comfortable on your wrist, whether you're running, swimming, or sleeping. And it's the fastest charging Apple Watch, getting you eight hours of charge in just 15 minutes.

The Apple Watch Series 10, available for the first time in glossy jet black aluminum. Compared to previous generations, iPhone XS or later required, charge time and actual results will vary. Mayday, mayday, we've been compromised. The pilot's a hitman. I knew you were going to be towards the end of my second grad degree which was was in creative writing, I met someone and fell in love as people do. It was a very thrilling and totally absorbing experience. It was that kind of everything is changed in your world and you feel like your life is orbiting in this new way around the center of feeling for this person. And that feeling was mutual. From very early in our relationship, we articulated is Brian, was a writer and was, you know, deeply dedicated to that work. And that doesn't have to do with anything external. He was absolutely devoted to the internal process, internal relationship that he had with writing to allowing, setting up his life in a way that allowed time to be at the desk, to try to

get the world that he felt inside onto the page, however he would articulate it, which I'm sure would be in a more complex way than I can. And so that meant a life that was relatively free of, or as free as possible of exterior responsibilities and family is, you know, the whopper of them all. He made that really clear that that's not what he wanted at the same time that we were, you know, more and more engaged with each other. And I was equally clear that I simply had never imagined a life without having kids. It just, it wasn't so much that it was just like, this is what you do.

It wasn't that. It wasn't extrinsic. It felt intrinsic. I want this. And I'd always wanted this to parent, to be part of a family. So those were two very different models. And yet you're like falling madly in love.

Yes. Try that. It's not that easy. It's like trying to bike across a tight wire rope or something. I'm going to suspend my disbelief enough to keep following the trail toward you. And it was tricky and it worked until I got pregnant. And then we both did precisely what we said we would do. And that was excruciating for each of us. I decided to go back to California, actually, because that's where the base of my support was. I was, you know, I wasn't young and I was certainly well-educated by then I'd finished these two master's degrees. And I'd been working at NYU for a while as an actor teacher in the school. So I had good work in New York. I had an apartment, but my family was in California and my two best friends, my two best women friends were in California.

I was lucky that they were both in the same place at the same time. And between the two of them and my mom, they were saying, we will help you. Ultimately, you'll do this in whatever way you want, but let us gather around. And it's what I wanted. What was it like when you stepped on the plane knowing that you were leaving? Honestly, I don't remember. You know, there are certain moments that sear forward and stick with you. That moment, I don't remember.

And there were certainly some going back and forth. You know, there was in the early part of that process of figuring out how to respond to my pregnancy, Brian and I were talking and there was some, I was sort of moving back and forth to California and coming back here for a couple of weeks. But when I finally went, I mean, really, really went and had packed my apartment and knew I was not going to be living there anymore, that I was moving back to California. I don't remember that plane ride. I just don't. I do remember how hard it was to be in California. When I first got back there, I had rented a studio, sublet it, from a friend who was

traveling. And one of my two good women friends, Cassie, had arranged that for me. And she made it beautiful. She had flowers and fruit and like, you know, she made it beautiful. She had flowers and fruit and like, you're going to be okay. But I remember feeling like, whoa. And, you know, people go through tremendously more difficult circumstances, pregnant on their own, pregnant without any resources, pregnant, and they're struggling with an addiction, pregnant, and you were facing an illness. I mean, there's so many ways to be toppled off of your axis

when you're pregnant. Whatever is happening in your life, the pregnancy acts as an amplifier, you know? So mine was relatively small compared to a lot of situations that are going on every minute, you know, all over the globe. And I knew that, but it was also that little world I was living in. I was sad. There was, you know, no other way around it. And it's odd to be sad when you're pregnant because pregnancy has this kind of inherent hope in it, right? Here comes this new person. There's joy attached. And I felt that, that I was kind of living two ecosystems at the same time. Yeah. Well, I mean, it's like you're on the one hand celebrating a new life and on the other hand mourning a loss, you know, and holding that duality,

especially at a time when your body is completely screwing with you from a chemical standpoint. Yeah, I mean, it's got to be somewhat of an altered state, I would imagine. And that, you know, I love that you use that word duality. And I think that that's one of the things I really wanted to hold on to at that time and still do is the sense that when you are experiencing tremendous and kind of countervailing feelings, you know, these two things that are moving against each other and in opposite directions, one doesn't necessarily cancel the other out. Things coexist. My grief didn't eradicate the love I had for my baby's father, and the disappointment didn't tank the joy.

I felt that a new life was going to come into this world, and I was going to get to know my child. And neither could the joy of the optimism or the love, you know, wipe off the board. There was anguish in the mix. So somehow it feels to me like, especially in this cultural moment that we're all trying, you know, struggling to make sense of, that there's more and more sense that things are one thing or the other. You're right or you're wrong. You know, this is good or it's bad. You're happy or you're sad. And that kind of monotone way of looking at the world or way of being, I don't think fits with most of our actual lived experience. wired to yearn, like we yearn for black and white. We yearn for yes or no, you know, because when we're in, you know, like that gray space in the middle, we kind of freak out because we don't know exactly what to do. I'm curious whether mixed in with this sort of, you know, like the

smorgasbord of emotion was anger in any way, shape or form. Oh, sure. Oh, yeah. I was really angry. I mean, I'm not saying it felt like righteous anger. I'm not saying it was. And I think that's another thing we get confused by a lot of times, especially right now, culturally. You know, righteous anger is this terrific currency, and it has its place. There are scenarios where righteous anger is called for, and it's a beautiful thing to behold. Mine wasn't one of them. It was a complicated situation. I was angry, and I was hurt. You know, we're all wired differently.

Very unfortunately, I'll say that the way I seem to be wired is that when I'm hurt, what leads the way is anger. That's pretty common wiring. It's common wiring, but it's too bad. You know, I mean, I remember I had a friend who used to say to me sometimes, could you put that in a more vulnerable way? That's a nice way to phrase it. Like, okay, let me try. I could learn something from this friend.

Yeah. Like, okay, let me try. I could learn something from this friend. Yeah, yeah. So you're back in California and you're carrying a baby and you have your baby. Take me to that moment. I do. Well, you know, I was in California, so we had to go about the birth in this very Californian way. I had a doula. You know, I was going to give birth in a hospital. It never

occurred to me to give birth at home. I guess I wasn't that daring. But within the hospital setting, I wanted everything to be as minimally medicalized as possible. You know, I had tried to get a tub you could labor in. That was a non-starter. As it happened, I had this very intense long labor at home. And at home by that point was the studio that was next to my mom's house. She had converted her garage years before into this little rental studio and kindly rented it to me when I needed it most. So I'd been there laboring for a very long time. And the doctor knew she was saying, you know, it's going to take forever. This is a first baby. Just stay at home, stay at home. And then finally, my mom realized that, no, like the baby was coming. And this sort of stay at home, stay at home advice

didn't fly anymore. The hospital we had intended to go to was over the bay. We were going to have to cross a bridge. And that whole plan was jettisoned. And I just sort of crawled to the car and got in. And we drove to the nearest hospital, which in theory is like 10 minutes away, but it took us 45 because I kept making my mom stop the car while I had contractions for the length of the contraction. And then she could go again. After I got there, the baby was born in 20 minutes. I mean, she was just, boom, surprise, here I am. So I had imagined the whole time that I was carrying a boy, I think because I wanted a girl unconsciously. My mom had raised me as an only daughter, and I thought that if I was going to single parent a child, it would be easier to have a daughter. And so I had sort of hedged against that because I didn't think it was a good idea to want one gender or another and convinced myself that I was having a boy and embraced that.

And then poof, there was a little girl. And she was beautiful. I went into that, you know, that inner dance of joy, that indescribable euphoria that new parents go into. And that lasted a very short time. some tests and it wasn't really more than an hour after they took her to do testing that they came back and said she's really in trouble. Her red cells are falling apart. She doesn't have enough red cells and her bilirubin is rising, you know, all these issues of the blood. And the urgent, immediate message was get up, get dressed. It's time to go to a bigger, better hospital. Basically, he transferred to UCSF, which has a phenomenal neonatal care center and was just about 45 minutes away. And so that's what we did. The Apple Watch Series X is here. It has the biggest display ever. It's also the thinnest Apple Watch ever, making it even more comfortable on your wrist, whether you're running, swimming, or sleeping.

And it's the fastest-charging Apple Watch, getting you 8 hours of charge in just 15 minutes. The Apple Watch Series X. Available for the first time in glossy jet black aluminum. Compared to previous generations, iPhone XS or later required, charge time and actual results will vary. Mayday, mayday. We've been compromised. The pilot's a hitman. I knew you were gonna be fun.

On January 24th. Tell me how to fly this thing. Mark Wahlberg. You know what the difference between me and you is? You're gonna die. Don't shoot him, we need him! Y'all need a pilot. Flight Risk. Did they telegraph in any way in that first moment what they thought the prognosis was? Oh, what an interesting question. If they did, I didn't pick up on it. You know, I was just,

I was back a beat. Kind of like, what? You know, get up? Like, get dressed? Right. Like, that's not the mode you're in. Yeah, no. And also, like, the baby's fine. Like, look at the baby. Smell the baby. The baby is fantastic.

That was kind of my line. They disabused me of that notion. And I believe them. They could look on the inside of her. I could only look at the outside of her. And the news was not good from looking within. But no, there was no, I had no sense of future in that moment. It was just get to the ambulance, get to the hospital, get admitted, get through the next days. Weeks and months down the road, I came to understand that she had a serious blood disease that was both intractable and undiagnosable.

The result of that was an insufficient number of red blood cells in circulation. She just did not have enough. And red blood cells are non-negotiable. They carry oxygen. You've just did not have enough. And you know, red blood cells are non-negotiable. They carry oxygen. You've just got to have enough. And so she was dependent on blood transfusions. And that dependency began in her first week of life and continued for the next three and a half years. So she was continuously being transfused. As I've said in other places, she was depending literally on the kindness of strangers, whoever these people were who were donating their blood. She was surviving on the kindness of strangers. How often would she actually have to get them?

It depended. Left to her own devices, she could only go about three weeks, maybe four, but I think closer to three. At one point in her infancy, they put her on the drug Epigen, which some long-distance runners have taken to boost their... It's like a doping drug almost? It was, I think, designed for leukemic patients or it's designed for patients with blood disorders to boost red cell production. It's been, you know, kind of co-opted, I think, in some sporting communities is giving you an edge. She, with Epigen, which by the way, and this really is not just a by the way, required a daily injection, she could go much longer, like six weeks, maybe eight weeks. It's hard for me to remember precisely. I'd have to go back and look. But it extended the time between transfusions significantly. However, giving a, I think she started on that around six months, maybe eight months, but giving an infant an injection every day is just like no fun.

It is no fun for the injector and it is certainly no fun for the infant. And I felt just miserable. I mean, again, you know, kids are experiencing much worse things ongoingly and in huge numbers. But this was my girl. Yeah, I mean, and I think that doesn't minimize what you personally are experiencing, like when you're going through it. It's hard to contact yourself with relatives. Right, it's like in the greater context, yes,

you can always look at the universe and say, in this country or in this place, like there's far more traumatic things going on. And at the same time, when you as a parent see your baby struggling for her life and suffering, nothing else outside of that exists. Yeah, that's true, actually. It does. The world gets very small and very localized. that particular action of giving her the shot was a misery because after a while they trained me and I was the one giving the shot. And it just felt so wrong for me to be both her loving, nurturing

mom. And then without any way of giving her context or explanation as an infant, also the purveyor of pain. You know, this person who's good to you all day long is now going to turn around and, you know, pierce your skin with this. Anyway, it was ultimately, at the same time, you know, you couldn't explain to her we're doing this because it's life-saving. But ultimately, I asked our physician after she'd been on the drug, oh, again, maybe six months or so, you know, what are the side effects for infants on epigen for this amount of time? What would you expect? And she said, we don't know. This has hardly ever been done. And so we backed our way out of that racket. You know, I just didn't want to keep doing that to her when we didn't know what the long-term side effects would be.

It's serious. You're pressing on the marrow to make more red cells. You're really sort of stoking the furnace in a way that you don't know what else is going to happen in the body as a result of that stress you're placing on the system. And then also the stress for Gracie of receiving an injection every day. So we gave that up and went back to blood transfusions on a fairly regular basis, close together. Of course, one of the questions that pops into my mind, and I'm sure, you know, everyone listening is,

at what point does Brian get a call? Oh, I called Brian right when I went into labor. I mean, we were, you know, angry and upset with each other. He wasn't angry with me. He was upset and he was going through a, I think he was very unhappy to be a witness to how miserable I was. And I think he wished with all his being that it could be different. And I know he himself was miserable. It's not like I went back to New York and he was, you know, the toast of the town here. He was hunkered down in a state of real unhappiness.

And the first, and we were in some contact while I was in California and during the pregnancy. We hadn't spoken in a while when I went into labor or hadn't, I don't remember, you know, what the last contact right before then had been, but I called him when I went into labor. That seemed right. You know, if you're going to do something that links you forward and back in time with someone, seems like you should at least give him a phone call. Let him know what's happening. He was very moved and responsive And, you know, memory is tricky. So it's easier to remember the things that you wish happened rather than precisely what happened. But I do know that we were in, if not daily, very frequent contact from then on. Brian was enormously concerned about Gracie's health issues, which presented themselves so quickly after birth, and very involved with trying to help find a diagnosis.

And even with trying to mitigate her pain, like I remember him researching madly pain management for infants and coming to me with different ideas or things he'd found in his research. And then when she was four months old, he brought up the idea of coming to meet her and did. What was that like? You know, it was one of those crystallized experiences where sort of everything feels intensely vivid, but there are so many facets of the experience that it's almost hard to take it all in at once. I mean, seeing him again brought back to me in a very surprising way my original feelings for Brian. So in advance of him coming, I was quite certain that it was right for him to visit. I was quite certain that the primary relationship now was between Brian and his daughter and between Gracie and her father. And that that relationship trumped whatever lingering feelings I had towards Brian that would cause static on the line.

I needed to put my feelings aside and make room for their relationship to develop in any way that it could. I wanted to nurture that for Gracie. And I'd sort of been, you know, talking myself through that in anticipation of seeing each other again. And kind of generally thinking like, put your feelings aside, which is where they belonged. But I think the thing that surprised me most when I just saw Brian, I happened to see him before he saw me. I met him in the town that I was living in, sort of on the main street of the town I had grown up in and was living in then, San Anselmo, California, was how familiar he felt to me. It was like, oh, Brian, not the person I'd been projecting all of my frustration or

disappointment or unhappiness onto in my imagination, which is not to say that there wasn't real hurt there. There was, but it cut through that and just returned me kind of in an instant to the impressions, the love, the affection, the respect that were original between us. And that's just my side of the equation. Then, of course, there was watching Brian meet his daughter. You know, that's something I describe in the book. And at the same time, I won't try to describe it again here now, because I do think that there are some things that are sacred, and not that they can't ever try to be described or written about or articulated.

It's beautiful. It's a beautiful act to try and describe the indescribable. And I certainly tried in the book. But there is a certain, you know, some things are sacred. They're just in a realm of human experience that's so profound that you can't even imagine the swirl of emotions from you, from him, that must have been flying around at that moment also. I mean, it's, you know. Yeah. If emotion were color, it would have been this, I'm sure, incredible, you know, panavision of Hughes. Yeah. And even from Gracie, I mean, I think infants, of course, have to be able to sense some of what the adults around them are feeling so intensely. And she was very calm, as I remember it, and very intent. She just really took in her dad. Did anything shift after that moment? Oh, I think everything shifted in the way that, you know, when you're anticipating something big, you can't really know what it is. You never do as much as you try and think it through ahead of time.

I think that for all of us, you know, who we were, the kind of trajectory that we'd seen ourselves on each. Gracie was a baby, so I can't really include her in this, but for Brian and I, that trajectory we had originally seen ourselves on, you know, me towards parenthood, him away from parenthood and engaged just with his writing life as the primary focus, those didn't just disappear. You know, those currents of self-assertion and creation versus obligation and family care, they're still there for both of us. We both possess both of those impulses. So they didn't just disappear, but I think that they were suddenly happening within the reality of family. Like we were that to one another, the three of us.

And that was palpable. And that didn't mean that Brian and I were going to fall into each other's arms immediately and that things didn't play out that way. It took time. And beautifully, wonderfully, we did ultimately reach a reunion, a re-communion. But whether or not we'd gotten there, I think the sense that we were family was, I can't think of a better word than palpable, but I know there is one. It was manifest. It was the air. This is.

So he eventually goes back to New York. He did. That was a visit. It was the air. This is. So he eventually goes back to New York. He did. That was a visit. It was a planned visit, but it did change everything. And, you know, he came again very quickly. He asked to come again. He, you know, and I had some, I can't say there, you know, I really knew I had the sense that I didn't know that we'd succeed at a partnership, but I knew that absolutely was what I wanted. And whatever other feelings I had in the mix, they were overridden by this, my wish to have a family together. And that clearly was Brian's intention as well. And he made it very clear and made it clear that he was willing to move to California. He had a sabbatical coming up in his work, and we made that plan for him to come and live with us first there and see

if we wanted to all return. So that happened. He came and he moved. Prior to him moving out, we had, you know, he'd begun to go to Gracie's doctor's appointments. I mean, we were in a reunion and operating as a unit. And at one of the doctor's appointments, they told us that though they couldn't offer us a diagnosis for Gracie and they couldn't give us a clear prognosis if she stayed dependent on blood transfusions, they could offer us a cure for her in the form of a bone marrow transplant. And they likened it to a car in which you don't know what part of the engine is broken. It could be the carburetor, it could be the fuel line, but you're just going to pull out the entire engine and replace it with a whole new engine. That engine being her bone marrow, which would produce red cells, new red cells. The little hitch, the tiny little

hitch was that in order to have this life-saving procedure, you needed a donor. And they said, well, if you had a sibling for her, they could be her donor. We not only didn't have a sibling, the idea of creating a sibling, first of all, is fraught if you think you're bringing a baby into the world to cure another baby. That's a very queasy-making proposition, and people are in that position and make all different kinds of choices. We decided not even to attempt that. We decided not to even attempt wrestling with that question because the doctors couldn't offer us odds on whether or not the new baby would be born sick. So because Gracie didn't have a diagnosis, they couldn't even tell us what our chances of having another sick baby would be. So in your mind, there's a risk that you may have another child with the same. Yeah. I mean, she might have had some genetic anomaly that created this, but she might

have had a genetic disease that they hadn't yet identified that we would just replicate all over again. And then we would have this gorgeous, sick toddler and a gorgeous, sick infant to match. And of course, if the baby was sick, all bets are off. Nobody's giving anybody a bone marrow donation in either direction. So we just put that possibility to the side and decided, no, not going to happen for us. There'll be another way for Gracie, we hope, down the road. And having emphatically decided not to get pregnant, I was, of course, pregnant within two weeks. And then we had to make sense of that and live with the risk of having a new sick baby and imagine how to take care of an infant at the same time as we took care of our

very sick little girl. our chances of having the new baby match her and therefore be able to cure her were very low, actually. We only had a 25% chance of that happening. So it was a very confusing time. And at the same time, it was laced with joy because we felt the solidity and the growth of our family. Okay, this is it. We're in it. And we're going to have these two kids, whoever they may be. Our son is born. It's a little boy. He's gorgeous. He looked like an infant version of Mick Jagger, I say. When he was born, are you holding your breath? Absolutely. I mean, the thing with Madison is that things often take longer. They're more

complicated than you imagine. So you think of a cure and it's like, poof, and the bone marrow transplant actually took 10 months. There's nothing poof about it. You think your baby's going to be born and they're going to tell you he's a match like an hour after he's born. In fact, that took four months. But what we were absolutely on the edge of our seats about was the collection of his cord blood. So the beautiful thing is that we didn't have to touch Gabriel, our son, we named him Gabriel, in order to get a donation from him, in order to get these cells. All we had to do was extract them from the umbilical cord. And those stem cells that we drew back out of the cord could cure his sister. So it was great not to have to breach him in any way.

And also, I mean, you must have been wondering from that moment also, is he okay? Absolutely. That answer arrived very quickly, mercifully quickly. He looked great at birth. I mean, she'd look great right at birth, but he continued in the hours after to be strong, healthy, pink. Pink was the key. You know, she'd been very yellow. She was, her red cells were getting eaten up and churned out in the form of bilirubin. And early on in that process, my mom had been telling the doctors and nurses, it's okay. Like we're Greek. She, you know, we're all yellow. And we just didn't get it, what was going on with her. But with Gabe, he was never yellow.

He was pink and healthy and great lungs and an enormous life force. He still has that incredible urgency, exuberance. And he carried it in right from the first moment. And we knew he was well. So that was just total joy. Man, that must have been just like a giant exhale. So much so. He's like, I mean, there's still uncertainty about Gracie and all that.

But just knowing that, right. I mean, that's huge. Healthy baby. If you're at a point in life when you're ready to lead with purpose, we can get you there. The University of Victoria's MBA in Sustainable Innovation is not like other MBA programs. It's for true changemakers who want to think differently and solve the world's most pressing challenges. From healthcare and the environment to energy, government, and technology, it's your path to meaningful leadership in all sectors. For details, visit uvic.ca

slash future MBA. That's uvic.ca slash future MBA. That's uvic.ca slash future MBA. Mayday, mayday. We've been compromised. The pilot's a hitman. I knew you were going to be fun. January 24th. Tell me how to fly this thing. Mark Wahlberg.

You know what the difference between me and you is? You're going to die. Don't shoot him, we need him. Y'all need a pilot. Flight risk. The Apple Watch Series X is here. It has the biggest display ever. It's also the thinnest Apple Watch ever,

making it even more comfortable on your wrist, whether you're running, swimming, or sleeping. And it's the fastest-charging Apple Watch, getting you eight hours of charge in just 15 minutes. The Apple Watch Series X. Available for the first time in glossy jet black aluminum. Compared to previous generations, iPhone XS or later required.

Charge time and actual results will vary. It's a joy every time it happens. It's happening right this second, you know, in dozens of locations just from, you know, less than a mile from here, I'm sure. But it's still a joy every time. And it was for us. Yeah. Yeah. And also the understanding that, you know, you could, once you realize that, that yes,

you know, you may be able to, I don't know whether the word is harvest or not, but then, you know, the blood cells from the umbilical because isn't like more traditionally for somehow plugged in my brain. I have like a recollection that when you do this with adults and there's a bone marrow transplant from other people that it's a very not pleasant experience for the donor. That's that's true. I mean, it's a life saving gift to the person you're giving it to. But it's it's traditionally bone marrow has been harvested from the larger bones, like the hip or the thigh, but that's when you're using actual developed bone marrow. You're pulling marrow out of the bone. In our case, we were incredibly lucky to be just on

the right side of the pioneering movement to use stem cells rather than actual marrow cells. So it's not like we had to wait for our son to grow up and then face the awful choice about whether we were going to harvest, to take your word, or collect his marrow. He came in with exactly what we needed in the form of stem cells. I mean, some of the incredible research that has come out of studying stem cells and what they can do and how adaptable they are. They're really kind of, from my lay person's point of view, magical element of the body in that they can morph into so many things. I'm going to skip us ahead to say that when Gabriel's, you know, ultimately the answer was yes, he was a match for his sister. He beat the odds. He had that one in four chance and he took it. And therefore we

transplant her. And that itself took a long time. It was a very hard decision because we had to accept a mortality risk for her upfront. They told us, I think they told us between 10 and 20 percent. Maybe they only told us 10 percent. Is that because they have to essentially kill the whatever is left of the existing marrow? And then if the new one doesn't take or what was. There are so many ways that bone marrow transplant can go wrong, honestly. And the absolute key is having the closest match possible. Because bone marrow transplant requires you, yes, to empty out the bones. You hollow out the bones and then give this gift of new cells, which will engraft, embed in the bones and create a new matrix and produce new red blood cells, white blood cells and platelets, it's risky. Because in order to hollow the bones, you have to hit the body with

what I think Jerome Groatman has called in the New Yorker, carpet bombing the body with chemotherapy. You know, it's a tremendous amount of chemotherapy in a short amount of time. By the time we actually took her transplant, yes, she was three and a half. You know, like I said, it took us a long time to accept that there was this mortality risk and we were going to be putting her life on the line in order to save her life, that we were willing to do that and to cure her. She was three and a half. So there's that chemotherapy that the body has to contend with. Gracie had a particular vulnerability going into that chemo induction phase because her liver was quite weakened. When you give people a lot of blood transfusions, iron accumulates in various parts of the body,

including the liver, and that had weakened her liver functioning. And so we had a special worry about the chemo, but she did it. She weathered that. And then for a lot of kids in transplant, they have to deal with opportunistic infection or virus after they've gotten their transplant, but they haven't fully engrafted because the marrow isn't working yet, or they've gotten a donation that's so different from their own body tissue that you have to suppress the immune system very powerfully with all these immune suppressive drugs, and that leaves them vulnerable. So all of those are risks. In Gracie's case, she was incredibly fortunate. Gabriel wasn't just a match, a perfect match in which you match six out of six primary HLA markers. He was an extended match. So out of, I can't remember the numbers. I should know them.

But it's something, he matched something like 17 out of 23 or 25. I mean, he really was in alignment with her. And so we didn't have to slam her body with all these heavy duty immune suppressive drugs. And she was able to get her strength back after transplant. How long after the transplant did you realize that this, it really worked and it worked on the best possible level? You know, always and never. Can that be my answer? I mean, there was uncertainty all the way through it. I write in the book and I say now in conversation with friends often.

There is, you know, Joan Didion has that beautiful phrase about magical thinking, you know, her book, A Year of Magical Thinking, and her magical thinking is that her beloved will come back. And my magical thinking as a parent and many parents was that it was impossible for my beloved to go. I just disallowed that possibility from my mind, from the room, from the whole process. She would live. That was the primary mandate. Some rational part of myself understood that that was a fantasy and that parents, you know, two, three, five rooms over were all thinking the same thing. And we weren't all right. Families did lose their kids on that unit. I watched it happen. I watched it happen to deeply loving

parents. And it leaves you with a lot of unanswerable questions. But that way of thinking, even though I knew it wasn't rational, worked for me in a certain way. I felt it was what I had to believe to go through the experience. When did I know she was totally well, it had worked, and it was all going to be fine? So the first part of what I just said is the always half, the, you know, this next part is the never. It's so hard to totally relax as a parent once. It's hard for most of us to relax as much as we probably should, right? And honest to God, the world does not just feel, but it is more perilous than it has been in previous times. It's a wild, woolly, complicated, and sometimes scary place out there. There's so many uncertainties for our new generation. For those of us who

are parenting now, it's daunting to relax, even if you didn't have a really sick kid. If your kid has been very, very sick or been in an unexpected accident or you've really been forced to look right into the glass, it's all that much harder to relax and to know things are really okay. So both Brian and I live with a certain, we'll call it, you know, extra vigilance. When Gracie's sick, we snap to attention. But I think we also both know that she is exactly what she looks like, which is a really healthy, strong-minded, vibrant young woman who will go out in the world, find her way. Hopefully, in some tiny way, make it better, link hands with the rest of her generation and get this world together.

So zooming the lens all the way forward now, as we hang out here today, this is now 15, 20 years ago? Well, Gracie's 16, and she was really done with her treatment at five. So it's 11 years ago. Yeah. Two questions are spinning around in my head. One is, you know, and you're located in the New York area now and sort of like built this whole new life and raising a family, teenagers. When you sort of, and there's some distance, there's distance now between like those early days and you just living a daily life as a family. When you go back and decide to actually write the book, and which means you're dropping back into a lot of these same memories and emotions and experiences.

The two things that are spinning around for me are, one, what's that like for you? And two, what's it like for her and for Gabriel? That's a really fantastic question. I'm going to answer the second part first. So I've written about that very process. Not to some extent what it's like for them, but also these bigger questions of writing about your family and writing about a time, writing very vividly about a time in your kids' lives that's outside the reach of their memory. So it's now encoded. It's now inscribed somewhere, but they don't necessarily remember it or have access to it. For Gracie, what she said is that she appreciates the little girl in the book and what she went through. She feels for her, but she doesn't identify with her. There are maybe two, I think, actual incidents, things that happen that I describe in the book.

One, it's not really an incident. There's a phenomenon where Brian used to ask Gracie if she wanted to watch movies, and he'd do that by standing outside of her room and holding VHS cassettes up against the window for her to give a thumbs up or thumbs down to, so that she could exercise some agency from that little kingdom of the hospital bed where she felt so beleaguered. It was a wonderful thing he did with her. And she remembers that. And I write about that in the book. There's another moment where she saved Gabriel from a black widow spider. She actually really did.

She didn't know it was a black widow, but she knew it was a spider. And Gabe was trying to plunge his hands into this bag of bird seed where the spider was and she was pulling him back by the diaper, you know, get away, get away, get away. So those are things I've written about that she remembers. They might be the only two things. So, so much of what's described in the book things she said she thinks she did she's reading about herself but from an outside perspective it doesn't resonate as her own experience at least not within memory cognitive memory maybe there are ways in which the body remembers the spirit remembers and it resonates there not to to say that it wouldn't match her own experience. It's me describing her, you know, not her describing her, but it might encapsulate some

of what she's been through. So she says, you know, she appreciates this. She doesn't necessarily identify with it. I'm glad because she doesn't identify in any way, as the young woman she is now, as sick. She has this history. It's a part of her. She doesn't deny it. But she doesn't think of herself as frail or as any more vulnerable than the next Joe. That's how she relates to the book. About her brother, the nicest thing that she said about the book, from my point of view, was about her brother, for whom it was quite hard to be the sibling of a kid who needed all this medical attention.

And he was born into a war zone. I mean, we were not a literal one, obviously, but we were doing battle with this disease. And he just had to get in there and go along with all that that demanded from us. She said about her brother, Gabriel, she said, I feel for the little guy. So, you know, I think it definitely gave her a little bit wider view on some of the experiences he had while she was sick and just what we went through as a family, the gestalt of what we went through as a family. Gabe has his own feelings about the book. I've written about those as well.

I mean, what was it like also? I'm curious. I'm sorry. Go ahead. No, no. Just, you know, he's 14. When you're 14, you're not like dying to have the world know who you were at two. You're wanting to be taken seriously as the young man you're 14, you're not like dying to have the world know who you were at two. You're wanting to be taken seriously as the young man you're becoming. And you kind of like to pretend your parents don't

exist to a certain extent. You publish a book and now you need to like go around and talk about it. You know, come on. I mean, also because like part of it is sort of like, you know, having like the public medical side of things also, but also having sort of like the intimate nature of the relational dynamic between. Oh, yeah. Like as parents laid bare. Yeah. I mean, we are very open with the kids about conflict, you know, when we have conflict, I think that, I think one thing that made me feel okay about laying bare that relationship history and describing our relationship in some intimate

detail in the book is that the kids have a very solid sense of us as a parental unit. You know, they sometimes will think, you know, one of us actually said something and they'll mistake it for the other one. They really don't have a lot of like, we're going to play them off of each other or, you know, they sort of accept the solidity of us as the partnership at the core of the family. You know, we have got all the crazy, difficult dynamics of any other family, but that solid core is there in a way that's enough of a foundation for them to feel comfortable, I think, with hearing about earlier times or more complicated

decisions we had to make. In terms of how the relationship is described, it was very important to me that Brian be totally comfortable with the way he was portrayed, the way I portrayed him in the book and the way I portrayed our conflicts or points of view. And so he read the book, you know, closely. We read it together, sometimes, you know, always line by line, sometimes word by word to get to a point where we felt mutually comfortable. Yeah, it's got to be such a challenge. Danny Shapiro is a friend of mine who's also been on the show. And so her last kind of short memoir hourglass when it came out, it's all about her marriage. And I remember she said to me that her husband, she gave the draft to him to read.

And his first response back was, you're not being hard enough on me. He actually wanted it to be more true. Yeah, Brian definitely had that response in several places. Because he's a writer too. Yeah, yeah, yeah. He wanted it to be real. I mean, there were places where I think he felt his point of view was underrepresented and places where he thought I was sort of going soft focus.

So, I mean, memory is just so interesting. One specific example of that is at one point in the book, I described this fight we have. It's the biggest fight still in Knockwood. I hope that we ever had or that we've had to date or the most kind of dramatic fight, I'll say that, where we got into this hassle with each other in front of the Brooklyn food co-op. And Brian ended up throwing the groceries that I had just bought like over the car into the street. And that's what I remembered about that fight. And I remembered this phrase that I'd used that had sort of set him off in the first place, where I tried to excuse, you know, I'd been gone for this incredibly long time, much,

we'd made an agreement about how long I would go in the store for, and I like tripled it. So I said 15, I came out in 45 for an hour, whatever it was. Just left him in the car with these two kids. What I had forgotten is that I said to Brian something like, I was shopping for our family, which has now become this catchphrase at our house. I was doing it for our family. You know, that just didn't fly. Like, Brian is a member of our family, and he was waiting to write, and we'd been at the hospital all day long. I mean, there was a whole, you know, complicated context around this. He kneeled on the concrete in front of me. I mean, it's a very dramatic gesture for this very, you know, he's a very dignified man in every aspect.

Oh, it just made me so angry. I mean, I really felt mocked. And I had completely forgotten that. I'd totally forgotten that. I just erased that part of the fight from my mind, that act of his, of kneeling down onto the sidewalk and kind of bowing. You know, ironically, it was not an act of actual worship in any way. But when he read it, he read the fight scene, he reminded me of that. And I was going, I think that makes you look bad. And he was going, put it in, put it in. It's real. So I appreciated that. Yeah. It's so interesting so interesting especially it's actually just

popped i mean danny and her husband are both writers also and you're both writers so it's all it's interesting to sort of like see when people have like a really fierce commitment to creative integrity how that sort of like weaves into something like this when you're creating it's like you jointly hold each other accountable to the truth. Even when one person doesn't want to go, they're out of deference to the other. Or conveniently doesn't remember, you know, like the, you know, lesser. Yeah, amazing. Such a moving story. So I kind of feel like it's a good time for us to sort of come full circle.

So sitting here, the name of this is Good Life Project. So if I offer the phrase to live a good life, what comes up? Pollyanna, the world is ending. But harder and harder in a world with so many distractions and so many sensory blinging lights and screens and sounds to pull us in. But to me, to be happy is to be alive to what's happening around you, really awake. It's not always joyful what's happening around us, but it's, again, it's what's real. I think that's the thing I would most wish for my kids is a sense of awareness, really lively, ongoing, deep awareness. Thank you.

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