I want to introduce you to a guy named Rob Delaney. Maybe you know the name already. He's a comic actor who co-created and co-starred in the hit TV show Catastrophe. It's a pretty standard rom com. Hapless American guy meets brash Irish gal and hilarity ensues. But I was blown away by how Rob Delaney inhabited that character. He was self-effacing and loveable with a kind of humor that makes you laugh out loud and then trail off because something about it burns a little. There was a sadness underneath all the witty banter. And that made it human to me in a way that TV shows usually can't capture.

It was only when I read Rob Delaney's memoir that I realized the source of that sadness. It wasn't a performance — he was living through the worst of things. Between seasons 2 and 3 of the show, Rob and his wife found out that their youngest son Henry had brain cancer. His family needed the income so he wrote and filmed Season 3 when Henry was in the hospital getting treatment. It was a long and heartbreaking process. Henry died when he was just two-and-a-half years old. Rob wrote about it in his memoir, A Heart That Works. And I talked to him in 2022, right after it came out.

And yes, this is about the saddest of places life can take you, but it's also about the biggest of loves and how to scrape up bits of joy wherever we can find them.

This interview has been edited for length and clarity.

Rob Delaney: Henry had blonde hair and blue eyes, really special blue eyes. They were light blue and dark blue. They kind of looked like a mosaic on a beautiful temple ceiling or something. They were so gorgeous. He was amazing and magnetic and then he got sick and, you know, it felt like forever, but it really wasn't.

It was a few weeks of trying to figure out what was wrong with him. And then we found out it was something really terrible. A malignant brain tumor right next to his brainstem. After that, he had surgery to remove it. And that surgery necessarily damaged his brainstem and cranial nerves. So he was quite disabled after the surgery.

And so then we got to learn more about him as he faced unbelievable adversity as a very young person. He became just an incredibly focused, dedicated, hard worker. It was the greatest expenditure of effort and will and drive that I've ever seen in my life. I joke that he made Albert Einstein look like garbage or something, like a dilettante.

Rachel Martin: Did he think you were funny?

Delaney: Yeah, he did. He thought we were all funny. I mean, everybody in my house is funny. My wife is hilarious and his older brothers are funny and Henry was funny. I mean, if somebody farted, I should have put this in the book, if somebody farted, he would do sign language for brown and point at the person. So he was super funny, yeah.

Martin: You wrote in the book that so much of what came after the diagnosis, all the surgeries and the treatments and the hospital stays, all became like a fog. But that initial conversation with the doctor, when you found out his diagnosis, was seared in your mind.

Delaney: Yeah. So there's sort of two horrible touchstone conversations. One was when Henry and I were in the doctor's office and he asked me a very curious question. He asked me if Henry's vomiting, which he was doing quite a bit of, was effortless.

I said, "Geez, that's a very interesting question. It's quite effortless. The contents of his stomach just come up and out. He's not bothered." And then the doctor got a very grave look on his face and he said, "OK, then I think we need to do an MRI of his head."

And I said, "Why? Is there, like, something in there? Like a tumor?" And he said, "I'm glad you said it." That's what he said to me. Then a few days later, he had the MRI, and they assumed it would take a while, so they sent us to a little cafe, you know, next door to the hospital, and we just did what we were told and went there, and we sat down at a table and I think we'd ordered some Greek pastry or something, and then he ran into the place and said, "Come with me now."

He told us that, yes, in fact, they had found a big brain tumor right next to his brain stem. And, you know, that was the moment that our lives changed forever.

Martin: You were working at the time, right?

Delaney: I was actually in between seasons of the show Catastrophe. It was in between 2 and 3 when he was diagnosed. And so I did return to work, I did write Season 3 and film it while Henry was in the hospital.

Martin: Could you escape into that role? Was it helpful in any way?

Delaney: Oh, it was absolutely helpful. I wouldn't say it was like an escape, but endorphins were produced when we were thinking up a silly scenario to put our characters into. So I was very grateful for work.

Martin: I shouldn't have used the word escape. You cannot escape the fact that your child is dying.

Delaney: Oh, but I know what you mean. Like, it's interesting, what words we use are sort of less important than the meaning behind them. So I know what you mean. It's funny, like, I work in words. But then when the unthinkable happens, you realize the limits that words have and then you realize, oh, it's what they're wrapped around that means the most, you know?

Which is why when people ask what they should say to the person who lost a child or lost a sibling or the spouse, or what they should say to the woman whose husband died while she was six months pregnant or whatever. The answer is it doesn't matter what you say because no words are going to help. And that's OK.

Don't be afraid of that fact, because what is going to help is a casserole, a foot massage, that type of thing. Going into their house, forcibly removing them from it, locking them out of their own home and making them go for a walk around the block while you play with their kids and take out the trash. That's what helps. That's what love is and looks like when people go through tragedy.

Martin: You mentioned this before, but I think it's also helpful to other people who are grieving, to talk about how important your relationship was with your wife during this time. What guidance can you give about how to keep that relationship intact?

Delaney: So I think we just realized somehow, and I don't know how we knew, I really don't. This is one of those upsetting moments where I start to develop something similar to faith, which I find very frightening. Because it was something like grace that came into our home. And by home, I mean our house and the two hospitals Henry bounced between.

We just knew, my wife and I knew that if our relationship fell apart, then that would harm the other kids and Henry and everybody needed each other and everybody had their role to play and we had to get his brothers into the hospital as often as possible And we had to get home as soon as he was well enough to come home for visits.

My wife and I went on dates. If one of our parents was able to visit, we would go on an overnight date. We'd go stay at a hotel near the hospital. And maybe the hotel even had a pool. And we would swim in it, and kiss, and fight. We'd have a fight. We'd go to a hotel for a date night, have a fight, make up, go to the hospital the next morning at seven.

Intra-family relationship hygiene was how we survived. And it made it better for Henry, for sure. And definitely made it better for everybody else.

Martin: You said in the book that you couldn't write about the moments before or after Henry died, but that you could talk about them. So, of course, I seize on that, and I ask if it is OK if I ask you a question about right after Henry died?

Delaney: You may ask it. We'll see if I'll answer it, but feel free to ask.

Martin: What do you remember about the room? What sensations do you remember? It's a very sacred thing. Well, maybe that's not the right word.

Delaney: No, no, it certainly is. It's one of the right words. It's sacred. You can't believe it, you know, it would be the equivalent of witnessing some unbelievable historic event or something. Like, you know you're being changed dramatically in that moment. It's a dividing line in your life.

I looked at Henry and he looked so beautiful. He looked so beautiful. He died on our couch. And he used to pull himself up on that couch and cruise. He never made it to walking because of the disability from the surgery. He looked like he was getting ready to walk, his cruising was getting quite advanced and he appeared poised to be walking soon, but then the tumor came back.

Martin: So he lived a good chunk of his life on that couch?

Delaney: Oh yeah, absolutely. I mean he was breastfed on that couch, he played with his brothers on that couch, he napped on it, all kinds of things. And then he lay dead on it.

His brothers woke up not too long after and came up and saw him. They were so young, they were three and five, they were our big boys as we called them. So they spent time with his body too, and I'm really glad we did that.

You've got to spend time with the body of your loved one. If you're lucky enough to have them die with you. Don't let the undertaker come anytime too soon.

Martin: You said earlier in our conversation that you'd had some brushes with faith through this journey, but that the whole idea of it was sort of frightening to you. Can I ask you more about that? What's frightening about it?

Delaney: You know, frightening might not be the best word. I guess I should say it's weird having grown up in the Catholic faith and then moving away from organized Catholicism and even Theism, you know, I still don't believe in a deity.

I'm OK with the word God, because God can mean a million, or I guess now eight billion different things. So I'm OK with the word God. Beauty, the force is also acceptable to me, you know. But I have felt palpable love.

I still bristle against the idea of a humanoid God, because that would just be so boring and even life on Earth is so amazing and wonderful so often that the idea of a God created in our own image does such a disservice.

So I believe in something better than a deity in my opinion. It's big and beautiful and we're all a part of it and there's real goodness and an undercurrent of it that we can plug into and access at any moment. And I believe that's as real as anything in the whole universe, for sure.

Martin: Do you have a concept for what happens to us after we die?

Delaney: I think we're like glasses of individual water. The glass itself is maybe, is it this body? Is the glass an illusion? But yeah, I think water is a good metaphor. I think we get poured back into a sea.

When we're born, we are conceived or whatever, we're scooped out of the water and think we're separate or made of different stuff, maybe for a while, and then we get poured back in. So I think after we die, I think I'll be with Henry again, but he won't be Henry as I know him and I won't be his dad as he knew him.

We'll all be mingled together wondering who's who and taking different forms and nebulae and dancing through the cosmos and evolving and changing. So I think we're ingredients in the big stew, and we'll be mixed into, I don't know, dinner for some cosmic Godzilla. And he, in turn, will metabolize us, and then belch us into his next incarnation.

Martin: I think that sounds perfect.

Delaney: Yeah. So I think that's what happens. And I'd stake a claim to that. I'd sign my name to that.

Copyright 2023 NPR. To see more, visit https://www.npr.org.

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