The Quiet Miracles of Pediatric Palliative Care
Pediatric palliative care reveals both the fragility and strength of the human spirit. In this deeply moving conversation, Dr. Robert Macauley—physician, Episcopal priest, author, and survivor—shares how his journey from childhood trauma to healing led him to care for terminally ill children and their families. Through his acclaimed book Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor’s Soul, Dr. Macauley reflects on how these young patients restored his faith, opened his heart, and showed him the transformative power of caring for children at the edge of life. Together, he and Irene explore how love, loss, and service intertwine to bring meaning, connection, and grace even in life’s hardest moments.
IN THIS EPISODE, YOU’LL HEAR ABOUT THINGS LIKE:
- The profound impact of trauma from child sexual abuse.
- The concept of “soul calluses” as a protective mechanism and the journey to regaining emotional sensation.
- The unexpected path to finding a calling in pediatric palliative care and how it can contribute to personal healing.
- Inspiring stories of families navigating grief and finding moments of joy and connection amidst unimaginable loss.
- The importance of expressing feelings and not leaving things unsaid to those you care about.
- The transformative power of vulnerability and sharing personal stories for collective healing.
- The redemptive aspect of pain and how past experiences can inform and enhance one’s ability to help others.
- The significance of supporting pediatric palliative care and initiatives for preventing childhood sexual abuse.
- The ongoing nature of healing and finding meaning in difficult experiences.
- The wisdom of “bringing forth what is within you” as a path to salvation and preventing self-destruction.
SOME QUESTIONS IRENE ASKS DR. MACAULEY:
- How did the child sexual abuse you experienced teach you to develop a sense of inefficacy, which is a lack of effectiveness in a world you could neither control nor understand?
- Could you describe what you called the “soul calluses” that formed as a result of the abuse you endured and how therapy not only brought you a return of sensation but also helped you to begin to emerge from this bizarre world where people said they loved you and then committed these unspeakable acts?
- What inspired you to become a pediatric palliative care physician?
- Tell us about how healing and transformation has taken place for people who have read your book.
- Why should people go out of their way, as you and I have, to heal? Why do it this time around and not wait for the next lifetime to finally get to it?
- What has your work helped you to discover about the unexpected ways that healing can come?
Don’t miss Dr. Macaulay’s Because I Knew You. Grab one here: https://bookshop.org/a/93249/9781594981517
💙 Every purchase of Because I Knew You makes a difference — all proceeds support pediatric palliative care through the OHSU Foundation and help prevent child sexual abuse through Darkness to Light.
GRIEF AND REBIRTH LINKS
✨ Irene’s new anthology book, Good to the Last Drop! Embracing Your Life’s Third Chapter, is now available on Amazon.
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✨ For a curated collection of Irene’s favorite books, music, healing events, and self-care essentials, head over to kit.co/GriefandRebirth.
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The Quiet Miracles of Pediatric Palliative Care
Unveiling Robert Macauley’s Journey: From Trauma to Palliative Care
I hope this message finds each of you so very well. I’m speaking to you from my studio in West Orange, New Jersey. I could not be more delighted to have the pleasure of interviewing Dr. Robert Macauley, who holds the Cambia Health Foundation Endowed Chair in Pediatric Palliative Care at Oregon Health and Science University. He leads the Bridges program for children facing life-threatening illnesses.
Bob is one of only a few hundred pediatricians in the United States specializing in pediatric palliative care. He trained in pediatrics at Johns Hopkins and practiced in Connecticut and Uganda. He spent fifteen years at the University of Vermont, where he directed both the Department of Clinical Ethics and the Pediatric and Advanced Care team. His academic credentials are as rich and varied as his clinical experience, holding degrees from Wheaton, Yale, Oxford, and even an MFA in Fiction from Vermont College of Fine Arts.
Bob has published widely on topics ranging from surrogate decision-making to civil disobedience in medicine. His textbook, Ethics in Palliative Care, is a cornerstone in the field. His newest work, a memoir titled, Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor’s Soul, offers a deep personal window into the transformative power of caring for children at the edge of life. If that weren’t enough, Bob is also an episcopal priest, having served congregations across five states.
I’m looking forward to a deeply touching conversation with Bob, who is joining us from Portland, Oregon, about his personal journey through the trauma of child sexual abuse, what led him to the calling of pediatric palliative care, and the powerful way grieving parents continue to give back, even in the midst of heartbreak.
We’ll explore how families find moments of joy and connection while facing unimaginable grief and share some of the extraordinary stories from his book, Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor’s Soul. We’ll also talk about the surprising paths healing can take, including how Bob’s heart-opening book chronicled his whole family’s shift from anger to deep sharing. This conversation will surely touch your heart in powerful, unexpected ways.
Finally, there’s so much to say about you. A truly heartfelt welcome to the show.
Thank you so much. It’s so nice to be here.
The Silent Acceptance: Childhood Trauma and Its Lasting Impact
Let’s begin with the beginning. How’s that? I’m so sorry you went through that. How did the child sexual abuse you experienced teach you to silently accept your fate, silence your feelings, and develop a sense of inefficacy, which is a lack of effectiveness, in a world you could neither control nor understand? How early in your life did all this begin?
Pretty early. When you go through things as a young child, especially, the whole world is outside of your control. You depend on other people for everything, for food, for shelter, and for telling you what’s right and what’s wrong. When you are exposed to things and endure things at a very young age, you don’t even know what you should be doing. You don’t even know who to turn to. Sometimes, you don’t know what is right or wrong. In the book that you mentioned that I wrote, I talk about the bizarre world that I grew up in.
I don’t think I’m alone as a survivor of abuse. The people who were involved in that, it’s not like they were like, “I know this is a terrible thing I’m about to do to you.” It’s veiled. It’s hidden. It is reformatted in ways that make it sound like, “That’s not such a bad thing.” The only way you know right and wrong is if you see it, learn it, and have a chance to talk about it. If you live in that world, you don’t know what’s right or wrong.
For me, the time I began to come to grips with that was when I got involved in therapy when I was in grad school. My first therapist, who was a remarkably wise person, took me aside as we were talking and began to reflect very gently back to me what I was saying. The reason I got into therapy was to say, “I had a great childhood. Why am I so desperately unhappy?” He nodded. It was surely not the first time he’d heard that. He knew enough not to come out and say, “Maybe that childhood wasn’t exactly what you think it was.” Then, things started coming out in huge blank spaces. I have 2 vivid memories from before I was about 10 years old. It’s a blank spot.
Gradually, things began to come back on some level. Even when they did, I would say, “That happened.” It was almost like I wasn’t even aware of what that meant until other people, literally multiplications, said to me, “Did you say that happened to you? We need to stop right now and talk about this.” They had a barometer that I did not possess. I was a little kid, and I didn’t know what to do. The world was a place where I depended on others. When that happens and you don’t know what to do, it gives you a sense going forward, like, “If I couldn’t change anything then, what makes me think I can change anything now about my life or the lives of others?”
When you go through things as a young child, the whole world is outside of your control. You depend on others for everything: for food, shelter, for telling you what's right and what's wrong. Share on X
Feel free to say you don’t want to talk about it, but I’m curious. Was it one perpetrator or were there a few in your life?
I appreciate the question. It’s a complex question to answer. As I say in the book, there are people who have written about their childhood experiences in great eloquence and great power, more so than me. My focus is less on exactly what happened and more on what that means for me. What does that mean for me going forward, and how can I try to find healing in the midst of that?
Soul Calluses: A Protective Mechanism and the Path to Sensation
You’re also a wonderful role model to show people that you went to therapy, or you were starting to come to terms with the effects of what happened to you. You weren’t even conscious of it yet. I know so many people who will say that, “Everything was perfect, and it wasn’t.” They’re acting out, and they don’t have a clue. Could you describe what you call the soul calluses that formed as a result of the abuse you endured? Explain how this therapy not only brought you a return of sensation, but also helped you to begin to emerge from this bizarre world where people said they loved you and then committed these unspeakable acts?
Soul calluses is a term that I came up with a long time ago to describe what I was experiencing. A callus, if you think about it, serves a purpose. Babies’ hands are very soft and gentle, but they’re also very vulnerable because anything can pierce them. If you look at someone who works with their hands, gradually, they develop calluses. Something that would normally prick a baby’s hand all of a sudden doesn’t even get through the callus because it’s protective.
I don’t mean to say calluses are a bad thing. They serve a purpose. I’m glad my feet have calluses on them because that means I don’t get blisters all the time. At the same time, one of the sacrifices that you make with a callus is that you don’t feel things as much. If you have a thick callus on a hand or a foot, then your sense of touch is diminished. Your sensitivity is diminished. I don’t mean to say this with regret. I’m glad this evolved. I developed these soul calluses, where it was almost like the things that were happening to me weren’t happening to me but to somebody else, because I couldn’t feel them.
A lot of survivors of abuse will talk about dissociation. I can dissociate on an elite level because I learned how to do that at a very early age. When I started getting involved in pediatric palliative care, so taking care of kids with serious illnesses, that’s a field that a lot of people don’t know exists. If they do know it exists, maybe they wish they didn’t know it exists because it’s a hard thing to think about. It shouldn’t happen. I always say my greatest wish is to be out of a job, because if no kid gets sick, I’m like, “Great. I’ll take my place on the unemployment line gladly.”
What ended up happening was that I found myself drawn to this field. For a while, I thought, “Maybe one of the reasons I’m drawn to this field and that I’m okay at it is because I can weather this storm because I have these soul calluses.” It didn’t mean that I didn’t feel things. It meant that I could tuck things away if need be.
My wife makes fun of me. She knows to be scared when I get calm. When I start talking in a calm voice, she’s like, “There’s something big going on,” because I revert to my calm, “I can cope with this,” self. When the dust settles and I’m by myself, or I’m with a few very trusted people, then the emotions come out. At first, I thought, “This is good. This allows me to function in this world of intense sorrow.” Sometimes, it does come in handy in intense situations.
Gradually, I realized that it wasn’t the greatest thing in the world because it’s not the healthiest thing to have calluses around your soul. Maybe you needed it at one point, but wouldn’t it be great if you were able to whittle those down a little bit and let that sensation return? I had to figure out what to do with that. If the thing that was my greatest protection no longer is in place, how do you continue to do this work, even if you think that maybe you’re doing it better because of the connections you can forge?
This problem you had with efficacy, did that also come from this experience?
Yeah. When you are a kid, you want something to stop it, but you don’t know how to make it stop. You don’t know what words to put to it. There was a sense of, “I could do whatever I wanted to do in life, or I could try to do whatever I wanted to do in life, but was it going to make a difference?” There were times, as I talk about in the book, where there were some patients whom I felt like I wanted to believe I made a difference in their lives. Even if they expressed that I had, it was hard for me to imagine that that was true. Could I make a difference in someone else’s life when I hadn’t been able to make a difference in my own?
The Calling: Pediatric Palliative Care and Healing the Doctor’s Soul
You were making a difference, and you didn’t realize it. You couldn’t let it in yet. You became inspired to become a pediatric palliative care physician. This helped you discover the unexpected ways that healing can come. Talk to us about that. What inspired you to do this work?
I talk about this in the prologue of the book. At first, when people asked me that question, I came up with very practical answers. I was like, “There’s an unmet need. I seem to have some basic preparation for meeting that need. I was a pediatrician. I was an Episcopal priest. Maybe I can engage with people on multiple levels about what’s going on.”
Some people pushed me on that to be like, “That’s a practical answer, but why?” Eventually, it came to me unintentionally to blurt out one day, “I got involved because I didn’t want any other kid to hurt the way that I did when I was a kid.” It was in a different way. Kids who are suffering from serious illness are a different kind of suffering. I don’t mean to equate those two. At the same time, that’s what drew me to the field.
For me, it was one of those questions about, “Now that I’m beginning to realize what brought me here, how does that impact the care that I provide, and how does it impact how those patients and their families touch my life?” That’s why that’s the subtitle of the book, How Some Remarkable Sick Kids Heal the Doctor’s Soul.
It’s an interesting question. When I started writing this book, I wanted to tell the stories of these kids because they deserve to be told. When I finished the first draft, which took me a year-plus to write, I shared it with some people whom I trust. The thing that they said to me was, “It needs more of you in it.” I was a little bit more of a removed observer. I had alluded in the early drafts to my own life, so I said, “Let’s go all in.”
My greatest concern was that it would detract from where the attention should be. For someone who reads this book, the attention should be on these amazing kids that I had the privilege to help take care of. I’m like, “If it turns out to be all about me, then that’s distracting from what the focus should be on.” I was worried about this.
The parents in the book, whom I had reconnected with to tell their child’s stories, we had these incredibly powerful conversations where we would remember their child and the end of their child’s life if their child didn’t make it. I’d write the chapter, and we’d come back again and make sure everything was the best it could be. These are incredibly powerful conversations.
The book comes out, and I’m like, “I can send you the book.” Most of them were like, “That’s fine. I’ll read it when it comes out.” I didn’t know how they were going to handle this balance. I was like, “Did I hit this balance right?” I have this love-hate relationship with social media. Usually, it is hate, but in this case, a wonderful thing happened through social media.
I can relate to that.
One of the parents had a post on social media after she had had a chance to read the whole thing. She had this wonderful concluding sentence that meant the world to me. She said, “We’ve always known how much he meant to us. Now, we can see how much we meant to him.” I don’t know if all the parents in the book feel that way, but if I’m even close, that’s music to my ears. I’m like, “That’s exactly what I wanted.” If I hadn’t talked about my own life, they wouldn’t know that. They would think I was some person who was writing these stories about their kids, and I cared about their kids. They didn’t know until that time how much they had meant to me.
That’s beautiful. I’m going to volunteer the fact that many doctors are not empathetic people. I have experienced that where they don’t want to know about what you’re going through emotionally. They’re like, “Let’s get to whatever your symptoms are,” and then do all that kind of thing. I could see why you are so empathetic. I could see why this is such a good fit for you. I could see that these kids helped open you up. They helped you start to feel. I could see that. What you also say in the book is that your patients show you that being a kid means fighting for what’s important and true. Do you want to talk about that?
Sure. When I was a kid, the way that I was raised was, as I say in the book, to be Exhibit A. This is what my father called me on multiple occasions. I was supposed to be this invariably polite young man who spoke to adults in a respectful way and things like that. I don’t mean to say that’s a terrible thing in and of itself, but if that’s all the child is, there’s a whole lot missing.
It doesn’t exactly leave you to be you. You have to perform to survive. I had a similar message. They were like, “The strap is nearby if you don’t behave the way you’re expected to behave.”
I don’t want that. I don’t want that for my kids, and I don’t want that for other kids. When I started treating kids with very serious illnesses, they showed me that they were able to ask for what they needed, and that was honored, invited, and respected. Sometimes, those things were hard because they were facing not just a heart situation, but a profoundly unfair situation. As a result of that, they not only showed me that they could speak up, to which children should speak up, but that a lot of people underestimate kids.
When people say we don’t want to tell them what’s going on, I’m like, “Kids get a lot more than we give them credit for. They pick up on things.” I think that they are able to go beyond what a lot of adults are able to do. A lot of the kids I’ve taken care of have shown, to my assessment, greater courage, greater self-sacrifice, and greater compassion than most of the adults I know. Seeing that in them made me a better person.
Stories of Courage: Lily, Hope, and Rider – Newborns and Family Grief
That’s beautiful. The primary message of Because I Knew You: How Some Remarkable Sick Kids Healed the Doctor’s Soul is about openness to acknowledging and fully experiencing the pain that one has endured, and also the possibility of healing over time. With this in mind, very briefly, could you explore a few of these remarkable stories?
We’ll talk about a few of them in depth in a little while, but let’s explore a few of these remarkable stories in Because I Knew You. Highlight how these special kids helped heal your soul. The first three I chose were Lily Hope and Ryder. That’s about their newborns and family grief. Do you want to go with them, and then we’ll go to Grace?
Lily Hope and Ryder is going to be a little complicated. I’m going to try to do my best to share it. It’s one of those things that if you read about it in a novel, you’d probably throw the novel across the room and be like, “This is ridiculous. This would never happen.” Trust me, it actually happened. It started with Hope, who was a baby who had a lot of complex issues. She was never able to go home from the neonatal ICU and died at several months of age.
Her parents were wonderful people. They were grieving. They wanted to have other children. They were getting older, so they used IVF in order to get pregnant with their 2nd child and then their 3rd child. They continued to be involved in the hospital. Hope’s mom continued to volunteer to hold babies in the neonatal intensive care unit and the pediatric ICU, which is an amazing thing in itself. You lose a child someplace, and you go back to help other children. That’s Hope’s parents.
Let’s go to Ryder’s parents. Ryder was diagnosed at a few months of age with a very serious neurologic condition that we can now treat a little bit. Back then, we couldn’t. He died in the pediatric intensive care unit. His parents also wanted to have other children, but they weren’t exactly sure about how to do that. They had never been able to conceive naturally. Their other child had been adopted, and so they didn’t know what to do.
They finally said, “Maybe we should go down the IVF Road, but we’re not sure about our embryos.” They asked their fertility specialist, “Do you know anyone who might have any leftover embryos?” Hope’s parents said, “We can do this. We’d be willing to give you our embryos,” but Ryder’s mom wasn’t sure she could carry the pregnancy.
What they ended up doing was saying, “What are we going to do?” It turned out that there was a nurse who had taken care of Ryder who said, “I’m happy to carry this baby for you.” She is a remarkable person. She has a wonderful sense of humor. She said, “My uterus is currently unoccupied, and I like being pregnant.” She carried the embryo from Hope’s parents. Everybody was there together through the process. She delivered this baby, who became Ryder’s younger brother. His name is Boden. These three families all came together.
There’s a follow-up, which you don’t know about because it wasn’t in the book. The book came out in June 2025. My family goes back to Vermont, where this happened, every summer, so I had a chance this summer to get together in person with a lot of these families that I hadn’t taken care of in a long time. Those three families all got together for a picnic. Hope’s parents, Ryder’s parents, and the nurse who carried Ryder’s younger brother, Boden. We all gathered together and shared memories.
The remarkable thing about it is that Ryder’s younger brother, Boden, is a full sibling to Hope’s younger brother because they were from the same IVF batch, if you will, but they grew up knowing they were friends. They didn’t know they were siblings. The night before we were all getting together, independently, the boys asked their respective parents, “Who’s this doctor? Why are we getting together with this guy? What’s the story here?” They’d never heard the story, the boys.
The parents told the boys, “Your buddy is your sibling. You are full siblings.” They said to Boden, “Your buddy’s father is your biological father because he was the father of the IVF embryos.” They were like, “Okay,” and they kept going and went about their merry way. We had this beautiful sun-drenched afternoon by Lake Champlain, where we all got together with all the families and remembered together.
How old was Boden at this time when they told him?
He was about nine. All this took place a while ago.
That’s amazing. Was there also an infant named Lily, or did I get that one wrong?
There was a Lily. Lily was not part of that trio, but it goes along the same theme that you were mentioning. The title of the chapter, which is taken from a book of the same title, is One Hello is Goodbye. It doesn’t mean that if you lose a child later in life, that isn’t anything other than heartbreaking. I don’t mean to say that, but there is additional complexity when you’re welcoming a baby and then have to let go of that baby very soon thereafter.
There is additional complexity when you're welcoming a baby and then have to let go of that baby very soon thereafter. Share on X
Lily was a baby who had a very serious chromosomal abnormality. Her parents made a very thoughtful choice that they wanted to hold their live baby. They wanted to keep her comfortable for as long as she was alive. The thing that was striking about Lily was that her father is a remarkable guy. He was a carpenter, so he handcrafted her casket.
While a lot of parents, understandably, are expecting a baby and they’re decorating the nursery and doing all the things that you should be doing, he was crafting this casket. I went to her funeral. I knew in my head because he had told me that he was doing this, but I was utterly unprepared for what it looked like. First of all, it was beautiful. This wasn’t some DIY thing where someone is looking at YouTube. He was a professional. He put so much love and care into this.
The other piece, which I’m a fairly smart person, so I probably should have picked up on this before, but it didn’t strike me until the moment, was how small it was. When you hear casket, you think of something like an eight-foot-long box. This box was about two-and-a-half feet long, but it was so beautiful and so intricate. I thought to myself, “How many hours did he spend doing this while he’s showing love to his baby yet to be born, even as his heart is breaking?” I’m still inspired by that.
I would think even the act of sanding the wood down and everything was very therapeutic for him in a somatic kind of way.
I hope so.
Grace’s Broadway Dream: Living Fully to the End
We’ll talk more about these people later, but tell us a little bit about Grace.
Since we are going back, I’ll save all the details for later. Grace was a remarkable kid who had been battling cancer for a long time. It became very clear that she was not going to survive despite all the noble efforts of her oncology team. What she wanted was to see Broadway. Some amazing people came together, including getting a corporate loan for us and all kinds of support for the Make-A-Wish Foundation.
That was an amazing story. I’m encouraging everyone who’s reading this interview to read this book. Grace’s story is amazing. It’s wonderful.
I agree. We flew to New York, Grace, her nurse, her mom, and me. She had a wonderful time in the city. She saw her Broadway show and got a backstage tour. We flew back, and then she died the next day. I don’t say this in any kind of blaming way because everybody is doing the best they can with what they’ve got, and there’s so much courage at the end of life, but sometimes, diseases are so powerful that people fade away. You hear families say they died on a certain date, but they left before that or struggled. Somehow, Grace managed to live her best life right up until the very end.
There's so much courage at the end of life, but sometimes diseases are so powerful that people just fade away. Share on X
Colin’s Legacy: Guilt, Integrity, and a Punk Rock Spirit
That sounds fabulous. Now, we have Colin. That story was briefly about guilt and integrity.
Here’s a confession. There’s a lot of confession in this book. We’re not supposed to have favorite patients, but we all have favorite patients. It doesn’t mean we don’t care about everybody else, but there are some that touch your heart. Colin was a teenager when I met him. He was dealing with cystic fibrosis. He underwent a lung transplant and ended up dying of complications from that cancer related to the transplant. The reason that I talk a lot about Colin was that he was such a remarkable soul, and his parents were so brave. At one point, he was a drummer for a punk rock band.
That was an amazing story, too.
As a kid who had cystic fibrosis, sometimes, he required supplemental oxygen to do the drums. I’m shocked and amazed that he was able to do that. His band got a chance to tour Europe. He was about 16 or 17 at the time. He desperately wanted to go. Everything in your parental fiber is saying, “I need to protect my kid. Am I going to let him with all these complicated medical situations go off to Europe and tour with his band?”
They did. They called it the easiest hard decision that they ever had to make because they knew how much it meant to him. He had to cut the tour short. He flew back to New York City. They picked him up at the airport in New York and drove him straight to the emergency room. That was what he needed. They knew what he needed, and they stood up and fought for him. It’s an amazing thing they did.
Christopher’s Sudden Loss: The Importance of Unsaid Words
It’s wonderful. I’m saying in each case that the parents didn’t sit on their pity pots. They made lemonade out of the situation. They did the best that they could, and the kids helped them in a lot of ways. It’s fabulous. Let’s talk about Christopher. I know that this is a story that’s very close to your heart.
Christopher is my best friend. I met him soon after we moved to Vermont. He has three kids. We have four. I consider his 3 as 3 more of my own. Here’s a funny story, to frame it. We were not only best friends, but before he grew a goatee, we looked a lot alike. There was this woman in town who kept getting us mixed up. I bump into her on the sidewalk, and she would ask me how Karen and the girls were doing. That’s Christopher’s wife and daughters. She then would ask Christopher how Pam and the four kids, who are my wife and kids, were doing. She was completely confused until she figured out who we were based on the kids we were with.
One time, he was desperate. He was like, “I got to go.” We only lived a few blocks away from each other. He was like, “Can you come watch my kids for me?” I’m like, “Totally.” I walked over to his house and took his girls down for ice cream, and then we bumped into this woman on the street. At first, she lit up because she saw people she knew, and then she had this crestfallen look on her face. She thought that she knew who I was, but I was with the wrong set of kids. It completely rocked her world.
He and I were best friends for a long time, and he died very suddenly. I got a call one night, 2 days after I had taken him out for his 54th birthday dinner. He had a massive heart attack at home. I had to go to the ER, and in a way that no one probably would ever expect, they asked me to determine when they should stop trying to resuscitate him. I had to break the news to two of his daughters and also break the news to my kids that their godfather had died.
It was one of those moments where I struggled with whether to include his story in the book because the book is about a bunch of kids I took care of. I don’t want to, in any way, equate what I felt to what a parent feels in losing a child. I loved Christopher. It’s different, though, for parents. I get that. The reason I put it in there was because it was so important to me, and also because it was my way of saying I don’t know how a parent feels losing a child, but I do know something about losing. Maybe that was a way to have some common ground.
It’s a wonderful story. I’m going to go back. Let’s talk about Grace. Fill in a few details of her last weekend, what she came to mean to you, and how she taught you the difference between should and shouldn’t. I know that is about the fact that she did this amazing thing when everybody thought she should not do that in the end. Do you want to talk a little bit about your Grace?
Sure. I helped take care of Grace for quite a few years. Her oncologist kept coming up with new treatment after new treatment. He is a remarkable guy. Eventually, there were no new treatments. She had finished her junior year of high school, and it was clear she wasn’t going to be able to even probably make it to senior year.
Broadway was her dream, and I didn’t know how to get her there. I was like, “I wish we could get her there,” but it’s a six-hour drive from Burlington, Vermont. Her pain was so bad that putting her in a car for six hours, even over good roads, was not going to help. A lot of other people got involved, people more creative than me. She had a nursing student who’s now a nurse practitioner who is a pilot. If you are a pilot, you have friends who are pilots. She called in some favors, and a local foundation said, “We can loan you our corporate jet for the weekend.”
Grace’s mom, me, this nurse, and Grace all got on this plane, and we flew to New York City. The Make-A-Wish Foundation arranged for her to go see Buddy Valastro, the cake boss himself. She and I had watched a bunch of Cake Boss episodes together. She got to meet him. She got to go see Wicked and got a backstage tour. All the while, she was fighting a lot of pain. We were walking a tight rope between treating her pain so she wasn’t in agony and also not overly sedating her so she could appreciate what was happening.
The next day, she was zonked. We went to FAO Schwarz. I will always remember this. It’s the most famous toy store in the world. I wanted to show her around, but she was so tired, so I wheeled her wheelchair off into a corner and I sat on the floor next to her. She dozed off because she was taking a lot of pain meds by then. Occasionally, she’d wake up and glance my way to know she wasn’t alone. Then, we flew back to Vermont. She was home for a few years before the pain got too bad. She came back to the hospital and died that night.
The thing about shoulds, though, that you mentioned was powerful for me. I went to her memorial later that week. This is a kid who missed a ton of hospital a lot. You would think that a kid like that wouldn’t know too many people. This gym at her high school was crammed to the gills. This place was packed. Many people came up and talked about the impact she had made on their lives.
I thought to myself, as we talked about at the beginning, my whole childhood was about shoulds. It was like, “You should do this. You should be this way. You should act that way.” Her life was about shouldn’ts. She shouldn’t have gotten cancer. No child should ever get cancer. Even the cancer that she got, she shouldn’t have survived as long as she did. I’m so glad she did. She beat all the odds.
She was never afraid of saying what she wanted. If someone said, “You should do this,” she’d be like, “Why?” She asked questions. She questioned everything around her. She was brave enough to not only ask for what she wanted, but also to forgive people for maybe not being able to give it to her. The example that I give in the book was when it was clear she wasn’t going to make it. It was clear that some of the things she dreamed of, like her class trip to Europe, weren’t going to happen because of a terrible pain crisis.
If you have a pain crisis because of bodily things, we have medicines for that. You give high-dose opioids, and you get that pain under control. She and I had done that a bunch of times. She ended up, very quickly, spiraling, saying she was in a ton of pain, asking for IV pain meds. I still don’t know if this is the right thing to do, but I said, “We can’t do that.” She was like, “Why?”
I still remember the look in her eyes. She was like, “Why? You told me I knew my body best. Why aren’t you doing this for me?” I said to her, “It’s because they don’t treat a broken heart.” In no way did she say, “Now I understand.” She was angry with me. The next day, when I went to see her, I was like, “I don’t know if she’s even going to want to see me,” but she was like, “What next? What are we going to do?” That was a level of grace.
Also, acceptance.
She knew my heart was in the right place. She might not have agreed with what I did, but she also knew that I wasn’t going to leave and that I was going to stand by her. That laid the path for New York City and all kinds of good stuff.
That’s an amazing story, as well as the other one about Colin and his parents, who made that decision and let him go and play with the band and everything. How long after that happened did he pass or transition?
After that, he was able to get a lung transplant, which was a very long road. It looked like he was going to make it. You shouldn’t get cystic fibrosis, and you definitely shouldn’t get cancer as a result of the treatment for your cystic fibrosis. The thing that was hardest for his parents, especially his mom as well as his dad, was that they used very elegant logic. As his mom said, “A parent’s number one priority is protecting their child. My child died. Thus, I’m not a good parent.” Those three things make logical sense.
A parent's number one priority is protecting their child. Share on X
I don’t mean to compare people, but if I were to compare, I don’t know any parents who fought harder and made braver decisions for their kid than Colin’s parents did. It was hard for me. I was like, “How do I help them see that?” At least the way I see things, they did everything. They made such hard decisions. They stood up for their kid. They were at his side all the time.
She was beating herself up.
She still is. Part of what I wrote about in the book was to try to hopefully help them see that it wasn’t that they were bad parents, and that’s why Colin died. Colin died, but he would’ve died in a much different way, and he would’ve lived in a much different way had it not been for what amazing parents they were.
It’s unbelievable. It’s incredible. It’s very interesting that she’s still struggling with that. I want to jump out and say to her that I know a bunch of healing modalities you could talk to people about, including your son, through a medium or whatever, which could help her. We get to Christopher. What I loved about your story with Christopher is that his sudden death taught you not to leave anything unsaid. Was there anything special that was said before he went, or did you wish you had said something to him that you didn’t get to be able to say?
There wasn’t any one thing that I wanted to say that I didn’t. There were certain things that I’m very grateful for. We went out two nights before he died. We went out for this blowout dinner for him to celebrate his birthday. He called me the next day and left a message because I wasn’t home. I remember that night saying, “I’ll call him back tomorrow,” but for whatever reason, even though it was late, I called him back.
He was very apologetic. He had a bit more to drink than he usually did. He was usually the driver, and that night, I was like, “I’m taking the keys. I’m driving this home.” He was like, “I’m sorry.” I’m like, “It’s no problem. It’s not a big deal.” He died so unexpectedly the next day. A part of me was like, “He’s carrying a burden that I didn’t understand that I was able to alleviate. I didn’t want him to have to carry that burden.”
After that, you never expect a person in good health at 54 to die that acutely, so I made a point of not leaving things unsaid. I wrote a long letter to my mom, who, at the time, was getting into her early 90s. She has since passed away. I was talking about all the things I cared about for her. My mentor and I went out to lunch. I think he knew this. Thinking someone knows something ceased to be enough for me, so I said, “You are a father to me.” We had this very tender connection, and he said, “You’re like a son to me.”
The Power of Vulnerability: Healing Through Shared Stories
That’s a beautiful story in the book, too. I could not agree with you more about, as I shared with you, how important it is to tell your feelings and to tell people how you feel about them. In my experience, my husband said something so beautiful and affirming. He said, “I’m so lucky and thankful to have you in my life,” and the next day, he was gone.
When I read that about you, I was like, “I can so relate to how important it is to say it.” A lot of families don’t express their emotions. They don’t express their feelings. They don’t tell anyone they love each other, and they’re missing out. Tell us about how healing and transformation have taken place for people who have read your book.
It has been wonderful. The responses have been far beyond what I had any reason to hope for. Granted, if you read someone’s book and they put their heart on the page, and you didn’t like it, you’re probably not going to go up and say, “I hated your book.” I grant that. There is a bit of a selection bias. People who have had a chance to either read it or have heard an interview that I did talking about it, it feels like we skip over a lot of the preliminaries. You bump into somebody, and you’re like, “How are you?” You figure out, “How deep is this conversation going to go?” It feels like we go from 0 to 60 in about 2 seconds. When there’s a lot of vulnerability on the page, it allows people to be vulnerable in their own right.
I hope that there will be some additional healing for the parents who have lost children that I describe in the book. I said this to all the parents. As I was writing it and as I was talking to them about it, I said, “At any point, you can tell me not to publish this thing about your kid. I’ll take the chapter out,” because the first rule of medicine is to do no harm.
I said that to Colin’s parents. I’ll always remember what his mom said to me. She said, “The worst thing that could ever happen to me happened to me. My son died. The second worst thing would be that the world forgets about. If your book makes that less likely, then that’s a good thing.” Maybe there’s some comfort for these parents. They’re never going to forget their child, but now the world knows about their kid and what a remarkable kid they had. Maybe the world will remember a little bit longer, too.
Giving Back: Supporting Pediatric Palliative Care and Abuse Prevention
It’s beautiful. Through your book, their child is going to make a difference in other lives, too. Speaking about making a difference, your proceeds from this book are going to the work of pediatric palliative care and the prevention of childhood sexual abuse. Do you want to say anything to us about that?
Sure. Most of the proceeds are going to support our program here at Oregon Health and Science University and the team that I’m a part called the Bridges team. One of the things about pediatric palliative care is that we don’t make a whole lot of money. We lose money because we don’t have a procedure that we can bill for.
I had foot surgery. My surgeon made more money off 45 minutes in the OR than I probably bill in a month at the work that I do. We need philanthropic support to keep doing this work. A portion of the proceeds goes to a wonderful organization called Darkness to Light. That is dedicated to raising awareness and preventing childhood sexual abuse. They’re like me. They wish they would be out of a job someday. Maybe we raise a lot of money, and then we make both of these professions unnecessary.
How can people find out more about Darkness to Light? Is that by putting it into Google?
They can do that. Their website’s pretty easy. It’s D2L.org. They’re a wonderful group of people.
The Ongoing Journey of Healing: Finding Redemption in Pain
What is the famous Bob Macauley tip about the importance of healing? Why should people go out of their way, as you have and as I have, for the pain and the courage it takes to face down stuff and heal? Do it this time around. Don’t wait for next lifetimes or reincarnations from now to finally get to it.
The first thing I would say is possible. A lot of people would wish to heal, but they might say, “It’s not possible to heal.” The stories in this book hopefully will show that it is possible to heal. At the same time, I like the term healing versus heal because healing underscores that it’s an ongoing process. If somebody were to say, “Are you healed?” I don’t think I would say, “Yes.” I would say, “I’m healing,” because there’s still hurt there. There’s still regret. It doesn’t mean you wipe the slate clean and everything is rosy. It means you know what to do with it.
For me, it has been incredibly redemptive to feel like what I went through is, on some level, helping me to understand what other people go through and maybe do better at what I do as a result of that experience. I wouldn’t recommend it, and I wouldn’t prescribe it for anybody. I say in the book, “Do I wish it didn’t happen to me? Heck yeah, but it did. Now, what are we going to do with that?” If there’s a way to bring some goodness out of it, then that has a redemptive aspect in the process of healing.
It’s beautiful. In a way, by doing this, you’re further healing yourself. You’re passing it forward, as they say.
First of all, when people say, “What do you do?” I always say, “I’m a pediatrician,” because then if they wanted to stop there, they can imagine healthy babies and immunizations. If they ask more, then I might go down the road of pediatric palliative care. Inevitably, what they do is they’re like, “You must be so self-sacrificial. What an amazing person you are.”
I stop them there. I’m like, “Is it hard sometimes? Yes. Is it really hard sometimes? Yes. Do I get a whole heck of a lot out of this? Yes.” I wrote a reflection a few years ago called The Selfishness of Pediatric Palliative Care. It might seem like an odd title, but I would not know how brave people could be if I didn’t do this work. That is an incredible blessing in my life.
The Gospel of Thomas: Bringing Forth What Is Within You
I hear you, and I feel that way about this show. I am hearing so many amazing stories. They inspire me all the time. The fact that they’re helping people is such a wonderful feeling. I feel very blessed to be able to do this. As my final question, what is the famous Bob tip for finding joy in life? I know you’ve studied Buddhism, and there are lots of things about joy, happiness, and wanting less. To the people tuning in, what do you want to tell them?
Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor’s Soul
It’s not a Buddhist quote, but it’s from the Christian tradition. My quote, which I mentioned in the book that has meant a lot to me, is from the Gospel of Thomas. It is a work that didn’t get included in the New Testament, although it resonates more with me than a lot of the things that did make it in. I’ll read you the quote. “If you bring forth what is within you, what you bring forth will save you. If you do not bring forth what is within you, what you do not bring forth will destroy you.”
I come back to that a lot to say that we all have things inside of us. Sometimes, it’s often scary to bring that stuff out because it is so personal, and it can be so painful. If we don’t bring it out, it will continue to fester and will drag us down. If we dare to bring it out, hopefully, we can find kindred spirits. I feel like I found a kindred spirit in you. What a blessing that is to be able to say I’m sharing my story, and I so appreciate you sharing yours.
Thank you. It’s true. We are in sync. We truly are. It’s a blessing. This is a wonderful interview. I want to close it by sharing a quote from Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor’s Soul. That moved me deeply. The quote is, “By showing me that goodness not only exists alongside the evil I learned of far too early, but in far greater measure, my patients and their exquisitely brave parents restored the balance of my universe. By piercing my soul calluses, they took away my crutch, yet somehow, I didn’t fall. Their courage inspired me so I could stand on my own.”
Your work is a quiet, powerful reminder of what it means to show up for others with tenderness, grace, and a wavering presence in their most vulnerable, heart-wrenching moments. Your personal journey from enduring pain and trauma to finding your way to healing and meaning is a testament to the resilience of the human spirit. Thank you for this deeply touching, healing, and unforgettable interview. Many blessings.
Thank you so much.
Guest’s Links:
- Robert Macauley
- Robert Macauley on Instagram
- Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor’s Soul
- Ethics in Palliative Care
- Darkness to Light
About Robert Macauley
Robert Macauley is Cambia Health Foundation Endowed Chair in Pediatric Palliative Care at Oregon Health and Science University. He received his B.A. from Wheaton College and M.D. from Yale. Following residency training in pediatrics at Johns Hopkins, he was a pediatric hospitalist in Connecticut and Director of Pediatrics at Kuluva Hospital in Uganda, before joining the faculty at the University of Vermont, where he directed both the Department of Clinical Ethics as well as the Pediatric Advanced Care Team. He joined the faculty at OHSU in 2017. He also holds a Master of Studies in Philosophical Theology from Oxford University, Masters of Divinity and of Sacred Theology from Yale Divinity School, and a Master of Fine Arts in Fiction from Vermont College of Fine Arts.
Dr. Macauley’s work focuses on pediatric palliative care, clinical ethics, and spirituality. He has served as co-chair of the American Board of Internal Medicine Hospice and Palliative Medicine Test-Writing Committee, chair of the Committee on Bioethics of the American Academy of Pediatrics, and on the board of directors of the American Academy of Hospice and Palliative Medicine. He has published articles on topics ranging from civil disobedience in the practice of medicine to the role of surrogate decision-making following a suicide attempt, in journals such as the Hastings Center Report and the Journal of Clinical Ethics. His comprehensive textbook Ethics in Palliative Care: A Complete Guide was published by Oxford University Press in 2018, and his memoir titled Because I Knew You: How some remarkable sick kids healed a doctor’s soul was published in June 2025.
He is also an Episcopal priest, having served parishes in Maryland, Connecticut, New York, Vermont, and Oregon.
In his spare time Dr. Macauley enjoys sailing, writing fiction, and chasing after his four kids.
