A Heart that Works is a Heart that Hurts

with Rob Delaney

Comedians have the ability to be unsparingly honest in ways that buck all cultural norms. It’s a truth-telling that so many of us crave.

Cue Rob Delaney.

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Rob Delaney

Rob Delaney is an American comedian, actor and writer. He is widely known as the co-creator and co-star of the critically acclaimed Channel 4 and Amazon Prime comedy Catastrophe, which broadcasts in over 130 countries around the world. In 2016, Rob was nominated for a Primetime Emmy alongside his co-creator, Sharon Horgan, for Outstanding Writing for a Comedy Series. In 2018, Rob was a breakout star as the fan favourite "Peter W." in Deadpool 2 - the newest (and beloved) member to the X-Force who has no powers but "just responded to the ad." Also in 2018, Rob hosted Comedy Central UK's Rob Delaney's Stand Up Central, an eight-episode stand-up comedy showcase. In 2013, Rob wrote his first novel and bestselling memoir, Rob Delaney: Mother Wife Sister Human Warrior Falcon Yardstick Turban Cabbage. In 2022, he published his memoir A Heart That Works, about the loss of his two-and-a-half-year-old son Henry to brain cancer.

Show Notes

A Heart that Works, is Rob’s memoir about his two-year old son Henry, who died of a brain tumor.

Rob Delaney and Sharon Horgan write and star in this R-rated comedy about an accidental pregnancy that leads to cross cultures clash and hormones flare in this romance comedy, Catastrophe.

Are you looking for people who are ready to be honest about grief and great loss? There are Grief Share groups near you, where people come together to find support, comfort, and peace.

Not sure you are ready for a grief group? Learn more about the potential grief groups in this conversation The Magic of We, where Kate talks with Justin Yopp and Don Rosenstein who created their own grief support group.

If you are parenting a medically-complicated child, we have put together some resources that we hope will support and encourage you, Parenting Happens Resource.

Kate mentioned how hard it is to switch between the kingdom of the living and the kingdom of the sick. Kate goes more in depth about this in her podcast with Suleika Jaouad, The Kingdom of the Sick.

Want to learn more about how cussing can help you medically? Frankly, we do give a damn: improving patient outcomes with swearing.

Tig Notaro, is a brilliant comedian whose real life informs her comedy and has a lot to teach us about living honestly in the face of reality. Listen to Kate and Tig’s conversation in, The Luckiest Unlucky Person.

Discussion Questions

  1. Have you ever been a caregiver for someone you loved—a grandparent, child, parent, or partner? Or perhaps you are a caregiver as your job? Or perhaps you witnessed someone in your life in a caregiving role. Share what it is like to be a caregiver in your personal life or as a career.
  2. When Rob recalls what it was like to care for his son, he remembers each act of love with great detail and intimacy. Rob says, “I miss it so much. I want to do it all. When I think about it, I don’t think about him pre-surgery, pre-disability. I want him back with his horrible tracheostomy, which allowed him to breathe. So I also loved it. I wish I was sleep deprived because I was sleeping on the floor of his room, listening to his breathing and his machines and stuff.” What have you learned about love from the act of caring for someone?
  3. One of the most condensed descriptions of God’s love comes from 1 Corinthians 13:4-7. The love of God is described as patient, kind, honest, gentle, humble, forgiving, protective, trustful, hopeful, and persevering. How do we see these qualities in Rob’s story of caring for his son? How do you see it in the stories you heard from others today? Can you imagine how much more we are loved and cared for by God, if humans have the capacity to care for others in these ways.
  4. Kate states, “There is nothing redemptive about suffering, period. But there is, I think, a hope of sanctification. When you love and you love and you love and then you do all the hard work of loving, just the act of loving makes you into a person.” Sanctification is a sacred act of transformation. How has loving someone or being loved by someone transformed you?

Transcript

Kate Bowler: Hi, I’m Kate Bowler, and this is Everything Happens. Okay. Confession. Some of my very favorite humans in the world have one job, and their job is comedian. There is just something about their ability to be unsparingly, sometimes painfully, honest, that just destroys the cultural scripts we get about what nice or polite looks like. And it’s the kind of truth-telling that I think that so many of us crave. Like, we don’t want the niceties. We don’t want the platitudes. We want honesty and maybe a second to laugh about how ridiculous our lives have become. We want the kind of truth from people who have the eyes to see. You know, like they get it. They get the joy, they get the absurdity, and they get the kind of tenderness underneath about what makes us all human.

Kate: So this episode is really special to me because I’ve been really hoping to meet this guy. Rob Delaney is one of my very favorite funny people. He’s a comedian and he’s an actor and writer, so he co-created, costarred this critically acclaimed, Emmy-nominated, BAFTA-winning comedy called Catastrophe. And it’s just basically perfect in every way. And if you haven’t seen it, you must. And I apologize that it’s very spicy. But Rob is also a gorgeous writer. He’s the kind of person that obviously writes to think clearly. And so his memoir, it’s called A Heart That Works. And it’s an unsparing account of the death of his beautiful son, Henry. He lives in London with his family. And that’s where I sat down with him. He rode his bike there. He’s very tall. And if you want to see video of me just losing my mind, either laughing or crying, we’ve got video clips of this whole interview (if you subscribe to my newsletter, that’s katebowler.com/newsletter). He’s the kind of person who doesn’t pull punches. He also doesn’t say kind of the typical kosher thing. His response to pain is very guttural and honest and frankly, incredibly funny. And so you’re going to hear that in our surprisingly intimate chat today. It’s a lot of dark humor, so prepare to feel mildly offended, but just know, you’re my people and the great tragicomedy is is one we all understand. All right, Rob Delaney, everyone. Rob, I loved, loved, loved your book. And I think the thing that is so striking about it right away is it doesn’t spare you anything. It’s intense and funny and wry and throat punchy. And it seems like you’re already practiced in unvarnished truth-telling. So I wondered if before all of this happened, were you like that?

Rob Delaney: To a degree. My boy Henry died right before he turned three. So we knew him. You know, he wasn’t a tiny little baby. He was a person with thoughts, feelings, opinions, tastes, you know, idiosyncrasies. And so when we knew he was going to die, and then when he did die, we were just destroyed. And I thought the best thing that I could do for people who haven’t experienced this is not try to protect them from it, which is a very powerful impulse. You want to like protect people from your crazy story sometimes or like ease them into it. And I just had developed, I guess, sense of like storytelling instincts from the other stuff that I’ve done that I was like, you know what? Maybe I shouldn’t. And maybe I shouldn’t worry about anybody else when I write this. But I was conscious at the same time that if I don’t do that, it’ll probably be the better book. Yeah. And so I just wanted it to be a disaster and I wanted it to hurt. Because if you read this book before something incredibly terrible happened to you, you might be in better shape than if you read something that was like, “Here are three mantras that you can do just even in the in your car before you unpack your seatbelt ” or any of that stuff. Because if you gave people something real, then they could like hang their hat on it, you know? And then for people who had been through it, I figured it would be like getting into a, you know, a GMC, you know, at sunset. So that was the goal, to give them something they recognized and said, “Yep, that’s what this is.” And then for people who hadn’t been through it to be like, “Why did you do that to me with your book, you monster?” And have me say “Yes, correct.”

Kate: I found that so refreshing. Something someone said to me recently, when I was having really debilitating pain and I didn’t want to finish that part of the story. Because I just thought because I can keep my voice up here and look how great it is when I keep my voice up here! And she said, “Oh, you clean up quick.” Yeah. And I’m like, Yeah. No, I think that is why it’s been. It is practiced now for me just even to let people feel the weight of the thing I want to tell them. Because it it is hard to say. Like right now I need this to hurt. When I tell you I want it to land.

Rob: And the weird part is, is that if they take it and hear it and and then they might not even have to say anything, but they sit there and I keep eye contact with you and they don’t hold their breath and let it in. Then you can move through it and then you can talk about like what to order for dinner or whatever. But if they don’t and they close off and they don’t want to hear it, then there’s going to be discomfort there that’s going to sour the rest of your interaction. Because it’s almost like somebody threw a handful of paint at the wall. Your story with cancer or death or both. And then they are like, “We shan’t look at it.” You know, there’s a big crazy orange star pattern dripping, you know, coagulating on the wall. Let’s acknowledge. And then then we can do our thing. But if you don’t acknowledge it, then. Then you go crazy.

Kate: Yes, that’s exactly right. You can tell when someone’s scared of you. You can tell when someone’s like, I’m going to keep a really tight script right now. Or all else we might fall off the edge and talk about something real. And then there’s times I think, I just don’t know how to manage the children’s birthday parties. I feel a part of, like, something growing inside of me where I want so much to answer everyone’s questions they didn’t ask, like, why do I need to do this here? I do, all of a sudden.

Rob: I have almost a hobby because you mentioned children’s birthday parties. I love it when a child will hear that Henry died and then ask me about it. And this has happened more than a couple of times where their parents’ radar will go up. But unfortunately, they’re about 15 feet away. And in the time it’ll take them to cover that distance to prevent their child from hearing about death, I’ve already told the story to their little child and they know that my child died and then they have that knowledge and their shitty parent can do nothing about it. And I’ve given them a gift because that child can handle it. They can handle it like nobody’s business. It’s that friggin brittle adult who thought, “Oh, I can control what type of truth reaches my child.” Well, you didn’t count on me coming to the party, did you?

Kate: There are moments that feel intolerable. I think once you know things, like your description of needing to not pretend anymore that an old person passing away is the same thing, right? Like playing the game. Everything’s the same because everyone wants a moment to relate and like, yes, we all have this deep desire to say, “Me too.” And yet things are not the same. And being able to parse those differences is insanity.

Rob: Yeah. Yeah. It was interesting. Like Tina Turner died and I think she was 83, if I recall. And when I heard that, I was like, wow, she made it to 83. How amazing. And now I’m reminded to listen to Tina Turner. Yeah. You know, amazing! And when I heard people being like, “Oh, my God, Tina Turner has passed away.” And I was like, yeah. At 83. After climbing the musical equivalent of a variety of Everest’s. Why are you not dancing, you know? And so that’s always strange to me. I mean, I get it, you know? But for me, it’s a whole different bag. Or that my dad died three days after A Heart that Works Came Out, and that’s my dad. And he was 74. I’d like to live longer than 74, but I’d rather live to 74 than not quite three like Henry did, right? And also, I didn’t want to be like the guy who, if I love you, you die. You know what I mean? Like I think I did on Morning Joe. They were like, “And your dad? How’s your dad?” on live morning TV. And I was like, “Oh, I hate to tell you this on live TV, but he did sort of die.”

Kate: Sort of is the most …

Rob: He’s mostly deceased and look I wish he wasn’t dead. I love him so much. And he took such good care of Henry. Oh, my God. And also the one-two punch of having the book come out and then my sweet dad die. My dad, Bob, after whom I’m named and who I look like and who took such beautiful care of my son. You know, he died.

Kate: He got the training. I mean, all the little tubes and processes.

Rob: I know. And now, like, I love that people can read the book and get to know him. Yeah, but the reason I wanted to talk to you about it is because it’s like Henry’s death and the grief for that is like Jupiter. Right. So your son dies of cancer, and that’s, you know, you barely survive that, you know? And then my dad dying is like, I don’t know, Neptune? Or maybe Earth. Let’s go. But it’s still a celestial body that would take you forever to circumnavigate. But it isn’t as big as the Titan. But it’s like the earth of my grief for my dad is, like, on the other side of the Jupiter. So I’m like, with Henry. So I’m having to really consciously talk to myself about my dad, like, out loud and talk to him and think about it because you got to grieve your dad, you know? But it’s like the fact that he died at 74, it just fundamentally isn’t as anywhere near as devastating as your two- year-old son dying, you know? So it’s been really weird. Yeah, I guess I just wanted to say that to you, that I’m, like, trying to, like, force myself to not as necessarily have certain feelings, but allow him to, like, be close to me.

Kate: Yeah.

Rob: And in my thoughts and in my heart. Because, like, in terms of mental-emotional hygiene, you better grieve your parent regardless of the type of relationship that you had. And we had a good one. You know, so that’s just a weird thing that happened.

Kate: Well, the affront of it. I mean, I have a friend who wrote a gorgeous book about the death of her child. She she talks about like the affront of the out-of-order-ness. And so, like, there’s grief that knows how to follow like A to B and B to C and C, D, and then when there’s no there’s no discernible alphabet.

Rob: I think I said that grandparent and pet deaths are like warm-up deaths for when you get like hit really hard. Those are like all little training wheels. Grampy dies, your grandmother dies … not coming to Christmas cause you’re dead. I’m so sorry. I was like raised by our grandparents and they’re calling and being like, “You son of a bitch!” And I, please understand. I don’t care.

Kate: There is something that goes to this. It’s funny that like. I mean, because there’s no justice to the way tragedy visits us. I think there’s a bit in there, at least my experience, where there’s a part in which I want an understanding of what it cost before I’m even like, that’s the that’s the price of admission. For for just understanding. Like, when I got sick, I had a little baby. And I would have to kiss him on his soft, little fuzzy head before going to chemo every time. And. Every time I found that it was it was just so surreal to toggle between like, you know, the kingdom of the living and then the kingdom of the sick. And because you can’t create a bubble around your loves. I don’t know. There’s something about all the medical stuff where you can’t really protect everyone from knowing, even if you wish, you could take a break from it. So your description of like the intimacy of caregiving and the privilege and the burden of it was really beautiful to me.

Rob: I miss it so much. I want to do it all. When I think about it, I don’t think about them like pre- surgery, pre-disability. Like I want him back with his horrible tracheostomy, which allowed him to breathe. So I also loved it. I wish I was sleep deprived because I was sleeping on the floor of his room, listening to his breathing and his machines and stuff. And I wish I was changing his tubes and, you know, dealing with the weird, permanent infections you can get. Like if you have stoma, like, holes that aren’t natural in your body, there are bacterias and stuff that can come and live there and you kind of can’t get rid of them. So you have to you know, I want to be doing all that because you learn all that stuff and now I can’t do it. Now I’m like, whenever I hear like a car crash, I’m not like, “Oh, scary.” I’m like, “Oh, I hope I can help someone.” I hope, you know, I was on a plane not too long ago and they were like, “Is there a doctor on board?” And I went up to the flight attendant and was like, “I’m not a doctor, but like, if there’s blood, I don’t care. Look how big I am. I can lift your biggest passenger, like, use me.” And they were like, “All right, weirdo.” You know? I mean, that was like in the first year after Henry’s death. But I’m constantly … like, if I weren’t exactly as busy, I am with a career that I’m really lucky to love, I would absolutely be, like, a part-time overqualified paramedic.

Kate: You describe a feeling that I’d not ever heard anyone say about suffering. The aftermath of suffering. You were like, I don’t know how to describe it. It’s this like you. You know how to dig in really fast? Like, there’s something about a long-term relationship with fear and then having and being like, I love you. I am rising to this, that you’re like, I have a higher pain threshold. Because I have this feeling like I could kill a man. You know, because I do now have a really, really high pain threshold. Even though there’s so much Little House on the Prairie content here, I have like a like a murderous ability to manage impossible situations and get it done. Like, I would happily volunteer to perform field medicine. You know?

Rob: Yeah. And then when I hear like, well,what if you died in the emergency scenario? Well then I would be dead. Like, that doesn’t even faze me, you know? I’m like, well, yeah, you might die. I mean, I’m not saying you’re not going to die. Or like, when I hear about a problem out in the world, I’m like, well, okay, yeah, sure. So totally people died, but also life will continue. So it’s so weird. What happens to your…

Kate: Yes. Frame of reference.

Rob: Emotional triage and everything. You’re like, okay, how do we get through this? You know.

Kate: I do feel that way when I meet people that you see it behind their eyes and you’re like, Oh, you and you and you. We have been handed a passport. And I like being around those people. I seek it out. And I sometimes that’s the only thing that makes me relax.

Rob: Yeah. I love hanging out with my fellow bereaved parents so much. Um, yeah, but I’m always calling, texting, hanging out with my bereaved parent friends because we can just chill around each other and get it, and it’s just easier.

Kate: In the before times of you, it seems like you were kind of on a big upswing. There’s a feeling I get sometimes where things are busy and things are wonderful and they kind of have competing loves and they take up a lot of space that I can almost overwork or overdo something. I think I’ll just pay it back later. Life is so full. Was that the season you were in?

Rob: When we moved here to London from Los Angeles nine years ago, I started doing the sitcom Catastrophe, and we did the first two seasons back to back. And it didn’t occur to me because I was going through kind of what you’re talking about, that I could say like, what if. Yeah, what if we took six weeks off between the two seasons of television? I know that we both write executive produce and star in? And so we just drove right in and that was a very bad idea. And my wife said towards the end, when we were editing Season Two, she said, “So do you have a second?” She said, “This last year and a half has been a waking nightmare. You have not been present. You moved me here with a three-year-old and a one-year-old, and I was pregnant. And I am incredibly unhappy and I’m going to divorce you unless you change the way that you work immediately.” And I thought about it for a second, and I said, “Okay.” And began to set about to do that. And then days after that, you know, not even a month, Henry became sick. And then we found his tumor.

Rob: And then, of course, you know, another thing we haven’t mentioned yet is that my beautiful young brother-in-law died by suicide one year before Henry died. Right? So Henry’s getting chemo in the hospital at Great Ormond Street Hospital, and I’m on the double-decker bus with my older boys. And when I say older, I do mean three and five. And they’re like my lieutenants, you know? So I’m heading home from the hospital. My wife has tapped me out and is at the hospital, and I’m on the top of a bus with my boys and my sister calls and tells me that her husband, my beautiful brother-in-law, has jumped off a bridge in Boston and is dead. And so all these things happening were, you know, just staggering. And my sister and I are are the only two in our family. And I’m five years older, and she’s a girl. I’m a boy. So, like, there was never really rivalry or real fighting. We’re just always like super pals, you know? And so it was so weird to, in the space of 15 months, have those things happen.

Kate: You both have unspeakable problems to people who don’t know how to speak about it. Yeah. And then you’re both cast out into outer darkness together.

Rob: Like you’d wish just one of those things would happen. You know, if you got to pick, like, do you want both to happen or just one, you would pick one. But that isn’t what happened. They both happened. Yeah. And so now she and I have a means of communication that is, you know.

Kate: Deep.

Rob: Insane.

Kate: Yeah.

Rob: And. And then our poor mom. It took me a minute to extend for the, I don’t know, shock waves or mushroom cloud of sympathy to reach and include my mom because she’s like one step too remove. But because it’s both her kids that happened, that’s so incredibly awful, you know, so that she’s still truckin and has been so amazing for both of us. I would really like to salute her resilience and beauty of spirit.

Kate: When we think about the shape that our families and our friends and our lives become. I mean, there’s not a lot of Mother’s Day cards that are like “As the years go on together, we will find …” Trying to think of a lot of rhymes for “together.” Just on the fly.

Rob: Leather

Kate: “Tears will…” Something. I mean, I’m just thinking of the the kind of ways we all have to change or learn to change roles over the course of each other’s lives and loves to be like I know how to be your mom. I know how to take care of these functional primary needs. And it’s like, oh, I need to learn to be your friend so I can let you go to college. I need to learn to let you have a career that is … Oh, wait, Now I need to learn how to be around catastrophic grief I cannot possibly solve in a way that is not annoying.

Rob: My mom told me about someone that she knew not terribly well. There was like a dinner party where there were people who weren’t like best friends or whatever, but whatever. A dinner party. And one woman was asked, “Hey, how are you doing?” Because she kind of seemed down. And her answer was, “Well, my daughter is in the fucking ground, so I’m not really doing that well.” And my mom wasn’t in the blast zone, so she didn’t have to. Maybe she wasn’t, but she overheard that and she knew that that woman’s daughter had died and was just like, “I’m really glad I wasn’t the one who had to respond to that.” Because who who would be, right? I mean, me. I’d be like, “Yeah, what the fuck?” You know? I’d be like, “Why don’t we go out? Let’s just get, you know, instead of like shooting b.b. guns at beer bottles? Let’s go throw other beer bottles at beer bottles. Let’s just throw beer bottles at cars. That will make us feel better.” But then my mom recently told me she was like, “Yeah, I remember that and everything that happened to our family.” And I was like, oh, yeah, she’s fantastic. Daughter’s in the ground. Not doing too good. How are you? How is your evening going? Do you like the rice pilaf? You know?

Kate: That Tig Notaro opening. When she was like, “I have cancer. How are you? How’s everybody doing? I have cancer!” I thought the cheerfulness of that just slayed me.

Rob: Yeah. She’s so wonderful. Tig. I love her.

Kate: I’m thinking about all the responses to terrible things that I did not love. I wonder if we could think of things say and things not to say for a bit.

Rob: Okay!

Kate: Things to say: I really like it when someone says some version of like, “I’m so sorry that happened to you.” The “to you” kind of gets me very emotional because it’s not like I’m some generic person in the world. I do really like when someone’s sorry for this specific reason.

Rob: Yeah, I mean, and questions I love. If my son died at the age of two years and nine months. And you learn that you are, I promise, wondering why? Wondering how? Wondering the circumstances. What’s his name? You know. I’m happy to answer those questions, you know, and to people who are like, well, I didn’t want to bring it up? You’re not bringing it up. You think I’m not thinking about my son who died, whose dead body I held? You think he’s not here with me right now? You think because he’s dead? I have four sons. One of them’s dead. But he’s still receiving a quarter-ish of my parenting energy. I mean, I’m sure the percentages change between kids every day.

Kate: That’s a lovely image.

Rob: He’s my son. Yeah, I’m his dad. That’ll never change. Where is he? I don’t know. That I don’t know. Which is good. I wouldn’t want to know. You know, I want wonder for when we die, the idea like, I know what’s going to happen. Come on.

Rob: I’m an answer factory if you ever want to know. I’ll just kind of slip him the secrets. I think you probably like bossy people just don’t ask random crap and show up with lovely things. I hated it when people said, “Is there anything I can do?”

Rob: Oh, yeah.

Kate: Well, I mean, you could come up with something to do and then show up and then do it.

Rob: You could not give me a job by asking me that question.

Kate: To figure out how to fit you into my now disappeared life.

Rob: You just bring a mediocre /not-even-good casserole. And you put it in my fridge. You know what I mean? You come over, you say you’re going to be here with my children for a couple hours while you go for a run or go walk in the park or whatever. Go find a weird corner in the park and lie down, face down, and cry into the soil and have snails drink your tears, you know? That’s much better. Also, kids, again, a nice parent with their kid, a good friend of mine, was sitting there and their daughter asked about my son Henry. “Whose Henry?” And I said, “He’s my son. And he died.” And she just went, “What? He died?” And I was like, “Yeah.” And she said, and “He died and he’s dead?” And I was like, “Yeah.” “How? Why?” I’m being like, he had a brain tumor, which is like cancer in your brain. And like, that’s so much better because every adult is that curious, you know, and so fucking ask. So I like those, you know, or people who were like, “Jesus Christ, I can’t even fucking imagine.” You know what I mean? Profanity. That’s its best use.

Kate: It is its best use. I feel a deep calm. Yeah. I had this weird response too. I was just starting cancer and I was starting Lent and that was my, like, 40 days of F-bombs. I work in a very religious context. And I was like, “This is the new me!” I mean, they have those studies of like if you put your hand in freezing, cold water and you’re allowed a million expletives, the people who are swearing the whole time can keep their hands submerged for longer. And I thought that feels right. And the worst things that people say…

Rob: Just like the question was “How are things?” Things are very bad. We’ve recently learned that Henry’s cancer has come back and he’s going to die. “Oh, yeah. My grandfather had a brain tumor. He got better, but.”

Kate: They always do so well.

Rob: So, that’s bad for you. Another one somebody said. “How are you doing?” Not great. You know, first Christmas without Henry’s coming up, and I would prefer to just go into a medically-induced coma just for six weeks and skip it. But then our new son had been born because my wife — I mean, this is a not even one podcast; this is a series — my wife was pregnant when Henry died. I mean, if you can even imagine that. And so we had a new son who arrived before Christmas. And this person said, “Yeah, but, you know, first Christmas with the new guy!” Like, as if, deflecting the fact. And for me, the thing is, it’s so weird because, like, the arrival of our new son in no way addressed Henry’s absence. By the same token, Henry’s death did not lessen our joy that this beautiful new fella who’d entered the scene. So it was almost like when you see, like, an estuary where, like fresh water and saltwater and, like, one is blurry and one is clear. They aren’t intermingling. You know what I mean? Like, they’re right next to each other and you might feel them at the same time, but the arrival of number four did not lessen the nightmare horror of losing Henry, nor did Henry dying make this little nugget any less delicious. And, you know, and I was very worried. I thought, well, I don’t love anymore because my heart is destroyed. So I’ll go through the motions with him. Like I’ll tell him I love him. I’ll dress him and feed him. But it’s his experience is going to suck, you know? And then the second he came out, I was like “Give me. Give me him! Give him!” You know, just like rubbing him all over my face and my head. And licking and biting his ears. The amount of time that my kids ears spend in my mouth.

Kate: I know, it’s insane! We had to make rules, like we signed contracts, my son and I. So many biting rules. It’s the only sort of like ‘constitution’ of that relationship. It’s liike, number one, under these conditions, I will eat you up.

Kate: Henry’s pain, I imagine, was always on your mind. But then his absurd, gorgeous joy and personality. It feels like you’ve got a lot of strong feelings about joy and puppies and what makes life really beautiful and good in the middle of suffering.

Rob: Yeah, well, they can happen and coexist and stuff, you know? So we were having a lot of fun often when Henry was in the hospital. You know, there are many terrible things. Too many to list when you have a tumor next to your brain stem and cranial nerves. It messes up a lot of stuff, but like frontal lobe, totally undisturbed. So like, just, you know, minutia and finer things and tastes, and foibles and stuff were razor sharp in him. So he was very fun. He was very funny. He was very curious. He was very mischievous.

Kate: He’s like stealing things all the time?

Rob: Oh, yeah. Yeah. I mean, nurses will be like, where is it? And Henry would be hiding under his pillow, you know. He would come out and climb up and sit on the desk of like the ward nurse head and help him answer calls and stuff. I mean, he was ridiculous. And also he was sort of a combination of like third boy in a very short space of time. I mean, his oldest brother was four when he was born, and then there was one more in the middle. So we’ve got three boys under the age of five. So since he showed up third, he kind of wisely was like, okay, I’ll be very magnetic and sweet and smiley and lovely, you know, not like screaming for attention, but just like being such that you couldn’t ignore him, you know? So he’d be like a little cutie-pie conniver, drew you towards him. And then after they found the tumor and he had a surgery, then he had to be like, you know, Evander Holyfield of just ferocious aspiration and drive to learn and relearn things. So he was just like, I mean, it was like in the midst of unbelievable hard work, you know, learning to use his body under these new circumstances. So he was this like the sweetest and most driven. He really made a lot of other kids look like shit.

Kate: Yeah, yeah. Those garbage kids. You just got to feel sorry for them.

Rob: Not my other kids, though, because they were so amazing with him. I mean, the things that they learned. Our other little gentleman, they could set up a feed like through the stomach tube and they could do basic tracheostomy maintenance and care and were always in his hospital beds and playing and like the the number of pictures we have of our three kids in one hospital bed having a very good time is just so … they were amazing and are amazing.

Kate: Because I often wonder as a parent, you always were like, who is this going to make you?

Rob: Yeah, I sometimes call our ten-year-old — and he’s the second born — the mayor of the family. Because he’s just a smiley go-getter, you know, and likes to be in charge and is loud and makes friends easily and all that and it sometimes can be really annoying and awful and physically attack both his older and younger brother and things like that. You know, he’s a human being, right? And anyway, so not too long ago, he was playing football. (That’s what they call baseball here.)

Kate: You should just keep adding new sport. That’s what they call ping pong. That’s what they call cricket.

Rob: And the grandmother of another kid that he was playing football with came up to me and said, “I just want to let you know, he’s been so kind to my grandson, Timothy, when he plays football and not all the other kids are. And, you know, he just moved to town. What your son Diego has been doing — by the way, I love that name, Diego — it’s just being really encouraging to him. And he’s so appreciated that and he’s come home and told me that.” And I’m like, okay. So I immediately start crying to this woman I don’t know. I’m like, “Thank you for saying that.” And then I’m like furiously texting my wife and like, “You’re never going to believe what I just heard! Diego is so encouraging!” He’s a good boy! Like I’m freaking out. And then Diego came over and I didn’t know he’d come up behind me and saw me sending the text. I was like, “You weren’t supposed know that. I was going to use that later as ammunition when you’d made me upset. I was gonna look at it.” You know just how weird intra-family dynamics are. “But now, you know, I’m so proud of you!” It’s the craziest thing.

Kate: Where we’re all just looking for signs. Who are you?

Rob: Like he was doing a type of kindness that, like you don’t have to do as a ten-year-old boy, you know? And I was just so happy to hear that. And so yeah. So I don’t know. Would he have he done that otherwise? Who knows? But I do know that he when he was four, you know, knew how to feed his brother with a machine through a tube in a stomach and set up all the weird controls for it. So it parcels that out properly through the night and stuff.

Kate: That’s always the hope, right? It’s not just for change. We’re all going to change regardless. But for some kind of and this is like this is one of my favorite theological terms, which I actually find useful, which is just like, there’s nothing redemptive about suffering, period. But there is, I think, I hope, I hope, I hope of sanctification. When you love and you love and you love and then you do all the hard work of loving.

Rob: Yeah.

Kate: That just the act of loving makes you into a person.

Rob: Yeah, if the things happen that are hard and you, like, metabolize them and turn out to hate them then. And you acknowledge, yeah, that really happened; it hurt terribly. It hurts right now, thinking about it. But it did happen. Yeah, I did acquire some hard-won skills that I would give away in a second. But I can’t. So I might as well use them.

Kate: In religious words, that would be like, “That is a testimony.” And I’m so grateful to have met you. I enjoyed that so much.

Rob: Thank you.

Kate: I used to imagine that life was a series of choices. You know, by my sheer grit and charisma and advanced degrees that I’d be able to get through life unscathed. You know, and then. And then. And then. And then. And I wrote about that feeling in No Cure for Being Human. And it’s always such a gift then when I get to meet other people who have the same feeling like they were suddenly exiled from a world that they loved. And they wonder, well, then how do you live? I think that’s one of my very favorite parts about this listening community, is that you all get it. You are people who understand that things happen that just unmake us, unmake all of our well-laid plans and all of our best intentions and our greatest hopes. And no matter how hard we try, we can’t put life together the way it once was. But we have to find a way to live now. Forever changed. Maybe with love and courage and joy and hope. Because what other choice do we have except to move forward with a life we didn’t choose? And Rob gets that. He has been unmade by the death of his precious, precious Henry. And I feel so lucky that he shared a bit of him and his grief and his razor-sharp wit with us today.

Kate: So before we go, you know, my friends, that I love to bless the crap out of you. So here’s a blessing for those spaces of deep hope and unchangeable reality. And the who am I now? So here’s a blessing for when you’ve lost someone far too soon. And hey, that includes grandparents. You’re allowed to be very sad about grandparents. And I do like it when people are funny about everything. All right, love. Here we go. God, this. This is impossible. This grief is too much to bear. If there was a tight order to the world that you made, it’s come unspooled and no one will wind it up again. I feel it coming. That ache for the stories that will never be told. And an anger rising when I remember what never should have been. Worst of all. God, could anything be worse? It is so beautiful the way this grief is a language of love. I am lovesick with this much sorrow. Teach me to speak this new mother tongue. Show me how to memorize so I can never forget what they gave. And what has gone. And what we were owed by a world robbed of their presence. And hold me by the edges for I am coming apart. And nothing but love will find me. Bless you, my dears. Have a lovely week.

Kate: Hey, so this is the part where I get to thank everyone, which is my favorite because I have a lot of people to thank. I have really generous partners. I’ve got the folks at the Lilly Endowment and the Duke Endowment who loves supporting storytelling about faith in life. And I’ve got an incredible academic home at Duke Divinity School and a new podcast network called Lemonada. Their slogan is When Life Gives You Lemons, Listen to Lemonada. So yeah, big fan. And I have the most incredible team and it includes the everly — everly is now my new favorite word. Wonderful. Jessica Richie, Harriet Putman, Keith Weston, Gwen Higginbotham, Brenda Thompson, Hope Anderson, Kristen Balzer, Jeb Burt and Katherine Smith. We planned some really fun things for this fall, and I really don’t want you to miss it. If you go to katebowler.com/newsletter, you can get my free weekly newsletter and it’s got all kinds of stuff, insider information, video clips from these episodes. And these are fun because this is like me and them in person crying into every possible sleeve. It’s got discussion questions, must-read books, printables, all kinds of bonus footage like this one with videos of me and Rob. Also, if you could take a minute, it helps the podcast so much if you don’t mind leaving us a review on Apple Podcasts or Spotify. It just takes a couple of minutes, but it makes a huge difference to the success of the podcast. And if you’re there, if you click on the subscribe button (I’m making a button finger gesture right now), you can subscribe to the podcast and then it automatically gives you all new episodes when they air every Tuesday. We really love hearing your voice too, so if you want to leave us a voicemail, we might even be able to use it on the air. So give us a call at 919-322-8731. Okay, lovelies. Next week I’m going to be talking with the wise and gentle parenting expert, Lisa Damour. Seriously, you’re going to want to take notes on this one. She’s got it going on. But in the meantime, come find me online at @katecbowler. This is Everything Happens with me, Kate Bowler.

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