A Heart That Works

by Rob Delaney

WHEN YOU’RE A PARENT and your child gets hurt or sick, not only do you try to help them get better, but you’re also animated by the general belief that you can help them get better.

But that wouldn’t work. So you sit there like a decaying disused train station while freight train after freight train overloaded with pain roars through you. Maybe one will derail and explode, destroying the station and killing you, and you can go be with your child. Would that be so bad?

Why do I feel compelled to talk about it, to write about it, to disseminate information designed to make people feel something like what I feel? What my wife feels? What my other sons feel? Done properly, it will hurt them. Why do I want to hurt people? (And I do.) Did my son’s death turn me into a monster? That’s certainly possible. It doesn’t sanctify you. Things get broken. Maybe it’s because I write and perform for a living that I can’t help but try to share or communicate the biggest, most seismic event that has happened to me. The truth is, despite the death of my son, I still love people. And I genuinely believe, whether it’s true or not, that if people felt a fraction of what my family felt and still feels, they would know what this life and this world are really about.

That is one thing grief does to me. It makes me want to make you understand. It makes me want you to understand. I want you to understand. But you, statistically, cannot. You forget that my son died. Then you remember. Then you forget again. I don’t forget. I don’t hanker for much about Victorian times, but the idea of wearing all black following the death of someone you love makes a lot of sense to me. For a while, anyway, I’d have liked you to know, even from across the street or through a telescope, that I am grieving.

If you’re American and reading this, you deserve to know that she didn’t even have to present an insurance card at these visits, or hand over a forty-dollar co-pay. (If you’re British and don’t know what a co-pay is, remain blissful in your ignorance.) Nor did she receive a bill for it a month later. (She did, however, have to genuflect to busts of Marx and Lenin and hiss at a small American flag.)

I smiled a lot around Leah anyway.

each BIG room had everything you could want to help you squeeze out a critter (as a decorated feminist, I can say with authority that this is how Today’s Woman prefers to describe birth).

in my work fever, I let my family simmer unattended on a back burner.

Grief drove a bus through the part of my brain where memories are stored.

he seemed like our “babiest baby.”

Maggie was married to a wonderful man named Tobias, for whom she’d fallen pretty hard several years earlier. My whole family fell for him, to be honest. He was a kind, gregarious, intelligent guy, who really fulfilled a “solar” social role in that he warmed everybody up and people were happy to rotate around him and bask. He also had a couple of degrees from Harvard, but we didn’t hold that against him.

Other times, I’ll dream about a terribly wounded animal that I’m frantically trying to fix, but I don’t have the proper tools. I wake myself up crying and struggling to breathe. I love these dreams. They hurt like hell and terrify me and make me feel close to him.

I don a clownish variety of hats and take them each off, one by one, out of respect to single parents who deal with similar challenges.

She just had an enthusiasm for looking after “the whole kid,” meaning that while all the medical i’s and t’s were certainly dotted and crossed, she gave equal attention to making sure Henry had a smile on (half) his face.

The paralysis on the left side of his face meant the intensity of the smile on the right side of his face was just off the charts. Your smile and my smile are more or less symmetrical, but since only half of Henry’s face could smile, you could actually measure just how wildly different his happy-to-kiss-and-be-kissed-by-Lola face was from his resting expression. When I look at pictures of the occasion, it almost looks like he’s straining his face; like the amount of sheer joy was slightly too much for a human face to safely express. It was easily, easily the most beautiful smile I have ever seen in my life. His little diapered bum sitting on the linoleum hospital floor, his legs splayed out with his little orthopedic black shoes, his smooth, chemo-fuzzy head, and the purest expression of joy you could imagine.

As Didion settles in to ride these twin waves of horror, I started to buzz.

I wish fate hadn’t given each of us the exact necessary qualifications to genuinely and substantively help each other, but it did, and we use them. What a fascinating cunt of cosmic symmetry. When one of us cries to the other, we don’t try to fix it; we don’t stammer platitudes. We just listen and hold.

Obviously, I must have been cognizant on some level of the number of layers I should put on myself and the boys when we went outdoors, but beyond that I didn’t really observe, record, or react with any joy or wistfulness as seasons passed.

Reflecting on his physical therapy reminds me that I’m not a fan of the “fighting” metaphor for cancer. I don’t think you fight it, or beat it. The effort I saw Henry expend, again and again, at the age of one, under such duress, suggests someone who could beat anything that can be beaten. Cancer’s pretty much going to do what it wants. Should it come for me, I hope I’ll just ride the wave.

Similarly, Smith’s music and other music that might seem—or even be—sad or blue makes sense to me, because I listen to it and think, “That’s how I feel inside,” so why not accept that and listen to music that helps me find some equilibrium between my interior and my exterior?

If you’re not British, the BBC has a channel for little kids called CBeebies, which probably does at least 25 percent of the UK’s parenting.

but when navigating complex admin and forms and hearings and being told no a lot, you should really endeavor to be white and have a degree or two.

IN BETWEEN HENRY’S birth and his death was, of course, his life. That was my favorite part.

the unalloyed beauty of his personality shone through stronger than ever.

For financial reasons, it’s terrifying to get sick anywhere in America, but it’s least terrifying in Massachusetts, as some of its elected officials actually give half a shit about their citizens’ health. You can still be profoundly fucked, even in good old Massachusetts, if you’re not a veteran or over sixty-five, and so have to rely on the pyramid/murder scheme that is private health insurance.

The point is, if you’re going to get leukemia in America, my advice is to wait until you’re elderly and have served in the military.

Private insurance companies work hard to preserve an opacity that demoralizes their users to the extent that they give up trying to access coverage for care, and pay out of pocket or—as in millions of cases—just forego necessary care.

One thing that absolutely blew my mind during all this was how my mom responded. My parents got divorced over thirty years ago, when I was a freshman in high school. Why they did so and how they behaved after that is their business, and should they ever decide to collaborate on a book or concept album about it all, you can hear it from them. I’ll simply say that for three decades, their relationship post-divorce veered between pretty bad to just about nonexistent. It appeared it would continue that way until one of them died.

I really loved that phone call, because it was the first time since Henry’s death that I felt like a child again in the presence of one of my parents.

And I missed all the care I had to do for him. One thing that fucked me up badly was losing the callouses that built up on my fingers from operating his suction machine.

In his primary school yearbook recently, for his Special Talent, he wrote: “I can fix anything.” Sweet boy, I don’t want you to feel that you have to.

A fascinating thing happened on two separate occasions when we told a nurse and a doctor that Henry’s cancer had returned and we weren’t going to pursue further treatment. They were quiet and comforting when we told them his cancer had returned. Then they cried when we told them we weren’t going to do more surgery or radiation. Then they both said they were crying because they were so glad we weren’t going to put him through any more treatment. Their relief was palpable, bodily, guttural. They said they wished more parents would do what we were doing. I am so grateful to that pair of witness. They helped underline for us that though we were awash with pain, we were making a good decision, based in love for our Henry.

My favorite historical response to someone hearing about a “big” death comes from the character Henry Clerval in Mary Shelley’s masterwork, Frankenstein. When Henry learns that his best friend Victor Frankenstein’s young brother William has been murdered, he says, “I can offer you no consolation, my friend. Your disaster is irreparable. What do you intend to do?” Perfect. There is no consolation. The disaster is irreparable.

Loving him meant we had to let the cancer spread and kill him.

What must it have been like to be pregnant, knowing you would be saying goodbye to one of your other kids soon?

When Teddy was born, a few months after Henry died, he made short work of me by being so fucking cute and wonderful. He’s so funny and fat. And he laughs! Holy shit, he laughs so much. I mean, what’s so funny? I’m wild about him, and when I think about him growing in the same womb as Henry, I’m so happy. I had a dream one night that Henry left a message for him in my wife’s womb. And it was in a little picture frame, complete with a little nail; Henry nailed it into her uterus. And I couldn’t read it—it wasn’t for me to read—but I knew that our new baby saw that, and I woke up and it made me feel happy.

If I see an ad that says something like, “It’s so nice to all be together!” I’ll think, “Well we’re not, asshole.”

I’ve also become allergic to adult’s birthday celebrations. Now, granted, you have to take what I say about this with a big grain of salt, because Henry died on my birthday. I fully submit myself on this point to anyone’s armchair psychological analysis.

Five months after Henry died, my dad was visiting and his trip was to include his seventieth birthday. I told him we wouldn’t be celebrating it. My dad’s seventieth birthday! My dad who’d taken such incredible, loving care of Henry. He was cool about it because he knew I was insane at the time, and I’d (hopefully) banked enough non-insane and kind behavior over the years to get away with it. But I’m now realizing I should apologize. Wonder if I’ll manage to do it before he reads it here!

OUR MOMS DID US the incredible kindness of going to the town hall and registering Henry’s death. I am grateful for this, as I don’t know if I could have registered his death at the same place I’d registered his birth less than three years earlier.

I am so happy that shortly afterward, his brothers Eugene and Oscar came up and cuddled with him and kissed him and were not afraid, because they had been so intimately involved in his care over the last two years, in the hospitals and then at home.

I will not tell you anything else about the moments before or after Henry’s death. I can talk about them, but I don’t want to try to confine them to ink. Maybe you have experienced something like them, or maybe someday you will.

I’m not exactly in the sunset of my life, but I have definitely eaten lunch.

The fatigue of grief is fucking staggering. For months after Henry died, I really, really wondered if I would wake up whenever I went to sleep. I couldn’t imagine that any sort of pilot light remained on once I surrendered to sleep. I felt no animating force within me, no desire or biological initiative or curiosity to see what the future held past the next chunk of sleep. Could my heart just stop, I wondered?

When Eugene, our eldest, was born, I was awestruck and overjoyed but I also thought, “Wow, I am gonna die.” I was ultra-cognizant that I’d fulfilled the big biological imperative I’d been put here for.

Naturally, when Henry died, I knew it a thousand times harder. Not only would I die, but my kids could die, and the order in which it happened was not up to me.

“I hate you, God. I hate you as though you existed.”

With the death of my blue-eyed son Henry, I often found myself driven by the urge to believe in God so I could live to a very old age, then die and meet Him—so I could kick his teeth in.

When you die, you’ll be okay.

Whenever someone tells me they’re expecting their first baby and they’re nervous, I tell them the following: “Oh my goodness, that’s wonderful. I am so happy for you. Listen, of course you’re nervous but here’s the deal: you’re ready for all the bad stuff. You’ve been very tired before. You’ve been in pain before. You’ve been worried about money before. You’ve felt like an incapable moron before. So you’ll be fine with the difficult parts! You’re already a pro. What you’re NOT ready for is the wonderful parts. NOTHING can prepare you for how amazing this will be. There is no practice for that. There is no warm-up version. You are about to know joy that will blow your fucking mind apart. Happiness before this? HA HA. Mystery? LOL. Wonder? Fuck off! You are about to see something magical and new that you have no map for! None! This is it. Are you ready for that? Are you? No! No, you’re not! Also, please let me babysit when you’re finally ready to let someone else hold your beautiful little nugget! First time’s free, second time is eighteen bucks an hour.”