A Heart That Works

by Rob Delaney

I felt like a lava lamp; the bits of plastic gloop bubbling around in me were actually bits of a dark sort of peace with death, a harmony with the knowledge that my son had died and that my own death would see me walk through a door he had walked through. We would share one more thing together. And that would be fucking great.

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.

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.

Truly one of my favorite memories as a dad ever: riding on the top of a double-decker to familiarize myself with the route to the hospital, with my trusty lieutenants in tow. At ages four and two, the idea of riding the bus with purpose, to help Mommy, who was getting ready to produce a new little sibling for them, was just intoxicating. Their little (almost) matching blue coats made them look like official little guys executing a most important task.

Discovery is a one-year-old’s entire MO.

we were just so scared and wanted to be so close, and the horror of what was happening around the block didn’t erase the fact that we loved each other, and sometimes that love manifests as sex, even in the absolute worst of times.

Henry did not cry. That’s because a common effect of surgery on your brain stem is that you lose the ability to cry for a few weeks or months, as crying is one of the earlier things humans learned to do, and is thus controlled by that oldest part of the brain, which, in Henry’s case, was totally fucked up. So we cried for him.

we were in a tunnel from which we would one day emerge into light.

It often felt like we were falling down a flight of stairs in slow motion, with each successive piece of bad news we got.

He was such a beautiful, fucked-up boy.

One major source of anxiety for me in writing this book is that I cannot name and celebrate everyone who made substantial contributions to the quality of Henry’s life, and our lives.

It was just staggering to go to the doctor and not pay anything out of pocket, since taxes covered it.

I would be remiss if I didn’t flamboyantly function as a sort of “Ghost of Christmas Future” for my British friends due to my (and every American’s) experience of the for-profit healthcare nightmare.

Holding a dog (even a small one) and letting it lick your face is absolutely just as important as your chemo, your radiation, or any surgery. Why? Because it fucking works, right then and there. Will your chemo work? Maybe. Radiation? Perhaps. Will holding a little Lola and playing with her make you smile your face off? Yes, it will, right then and there. Don’t need a prescription, and you don’t need to sign a disclaimer before you do it. Do dogs have germs? Maybe? Probably? I don’t care. I recall the doctors and nurses saying that a lot of the infections and illnesses that occur during the immuno-compromising that comes from chemo arise from germs and bacteria we carry in and on our bodies all the time anyway. So, you’re going to get sick from your chemo either way; why not get sick having fun? I remember asking Henry’s lead oncologist if it was okay for us to take him to a local park somewhat early in his chemo treatment. He said something along the lines of, “You better take him to a park!” To which we said, “But isn’t his immune system quite weak?” “Indeed it is, but he’ll enjoy the park and that’s very important.”

one cannot hit pause on family responsibilities. It cannot be done without inflicting genuine damage.

I hesitate to give advice, but I have to say that if you’re ever in a situation like the one in which my family found ourselves, do not forget to love, touch, and look into the eyes of every other family member regularly.

One of the worst parts of depression is that in its cunning, it wholesale convinces you that it will last forever. But that, of course, would be impossible. That is, I suppose, what I’d say to anyone dealing with it. I said it to him: it won’t last forever because it can’t last forever because NOTHING lasts forever, even (and perhaps especially) feelings you WISH would last forever.

It physically pained me to sign the consent forms each time he got chemo. Speaking of brains, my own frontal lobe knew chemo could “help” him, but my brain stem knew even more deeply the pain I was consigning him to.

In all the months Henry was ill, normal stimuli hadn’t operated on me in the way they had before. Details and information from the larger world that would previously have affected me exercised limited to no influence on the fact that my son was dying and then dead.

What I would fucking give to do that again. To sleep next to and dream with my beautiful boy. If I died tomorrow, those would probably be the greatest memories of my life. A boy and his daddy together, dreaming and sleeping.

It’s lucky in normal circumstances to be a college-educated white person, 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.

it’s cheaper for the government for a kid to be at home with a carer rather than occupying a hospital bed on a ward. Not that that was our motive, but come on; are you “conservative” or not?

For financial reasons, it’s terrifying to get sick anywhere in America,

If you’re reading this and work in private insurance or the American government, fuck off and fuck you, forever. In the words of David Lynch, “Fix your hearts or die.”

watching a fictional character go crazy from grief feels like getting into a warm bath.

I held my two-year old’s body after rigor mortis had set in? Did you know I saw it zipped into a black rubber bag and taken from my home by strangers?

With Eugene, our eldest and our lieutenant and trusted advisor, things are different, and just as sad and mysterious. Eugene is emotionally wise at a nearly preternatural level. In the too-rare moments Leah and I were both home from the hospital, Eugene would ask us to lie on either side of him in our bed and squeeze him as tightly as we could. Thus recharged, he would sense what we both needed and care for us, making us snacks and tidying up. It would be a relief when, like clockwork, he would freak out and cry and scream LIKE THE CHILD THAT HE WAS after his very genuinely helpful (and often quite long) impersonation of the adult/nurse/parent/maid that he sensed we needed. 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.

Grandparent deaths are like practice deaths, a step above pet deaths, to help you have the barest preparation for a truly painful death.

“I can offer you no consolation, my friend. Your disaster is irreparable. What do you intend to do?”

WE JUST DIDN’T WANT TO torture him anymore.

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

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.

when you spend time with your family in different configurations, you wind up seeing different sides of them.

now there’s a band of black in my rainbow, too, that wasn’t there before. Or if it was there, I couldn’t see it before Henry died.

We carried Henry out to the back garden so he could be under the stars and in the night air one more time before he died.

Henry opened his eyes and looked into Leah’s eyes around five the next morning. Then he died.

I AM SO HAPPY Henry died at home. I am so happy that he did so in the arms of his beautiful mother, who loved him desperately. I am so happy that he lay between us afterward and we could kiss and hold him and stroke his beautiful long, sandy-blond hair.

THE DAY AFTER Henry died, I punched myself in the face. I don’t know why I did it, but I did it hard enough that my nose bled. A hospice worker was at our house, helping our family. She turned to my worried mom and said, “Oh, yeah, that’s normal. Don’t worry about that.”

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.

I’d tried in the past to engage in some humility here and there, but having your child die is so brutally humbling I struggle to describe it.

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. I wanted to be a cockroach. I wanted to survive all the horror and the drudgery and the pain. Didn’t even want to do it happily. I just wanted to endure what shouldn’t be endured, and crawl on elbows and knees over the finish line and tell God to fuck off.

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.