Before the death of his two-year-old son Henry, comedian and actor Rob Delaney was actually working on a book for the “fellow parents of very sick children.” But when he found out that a brain tumor would invariably take his son’s life this year, Delaney quit working in the book to focus on being there to support his son at the end of his life. And now, eight months removed from the tragedy, the father of three has posted a piece of the abandoned book project and turned it into an essay about what it really means to be the parent of a chronically ill baby.
Delaney starts by breaking down how regular things like riding the bus began to feel both normal and irregular at the same time. All two-year-olds love an exciting adventure on the bus, but not every two-year-old is riding the bus because they need to be taken back and forth between two hospitals.
“I don’t want to take him on the bus to the other hospital because I don’t want to have to jostle with other curious passengers when I have to turn on his suction machine to suck out the saliva and mucus that collects in his tracheotomy tube,” Delaney wrote. “He would love to go on the bus though. He’s two. Despite the physical disabilities he has from the surgery to remove his brain tumor, he’s very sharp mentally and gets as excited about a big red double-decker bus as any other little boy”
Delaney goes on to describe the exhaustion from raising a sick child as something akin to having your face “stuffed with hot trash.” Regardless, that didn’t make his daily visits to the hospital, any less joyous.
“I’m always, always happy to enter the hospital every morning and see him. It’s exciting every day to walk into his room and see him and see him see me. The surgery to remove his tumor left him with Bell’s palsy on the left side of his face, so it’s slack and droops. His left eye is turned inward too, due to nerve damage. But the right side of his face is incredibly expressive, and that side brightens right up when I walk into the room,” Delaney wrote.
He went on to explain that doctors only came to realize Henry had a tumor when Delaney told one of them that his son never gags or wretches before vomiting. A kind of tumor called an ependymoma was pressing up against the part of the brain that controls those reflexes. Still, removing the tumor is what had left Henry so disabled and in need of a tracheotomy tube to swallow.
“My wife recently walked in on me crying and listening to recordings of him babbling, from before his diagnosis and surgery. I’d recorded his brothers doing Alan Partridge impressions and Henry was in the background, probably playing with the dishwasher, and just talking to himself, in fluent baby. Fucking music, oh my God I want to hear him again. Now he has a foam-cuffed tracheotomy tube in his beautiful throat, rendering him mute,” Delaney writes.
At the end of it all Delaney explains that he wanted to write a book for the parents of sick kids who he described as perpetually “tired and sad, like ghosts, walking the halls of the hospitals,” but he just can’t do it anymore.
“…our family’s story has a different ending than I’d hoped for,” he wrote. “Maybe I’ll write a different book in the future, but now my responsibility is to my family and myself as we grieve our beautiful Henry.”