Actor Rob Delaney Shares the Heartache of Parenting a Terminally Ill Child

On Monday, actor and comedian Rob Delaney shared excerpts from a book he was writing about his experience as a parent of a child with a terminal illness. Delaney said he decided to share the excerpts now to help other parents going through a difficult time. He will not be publishing the book as his story has changed following the death of his two-year-old son, Henry, in February.

“I can’t write that book anymore because our family’s story has a different ending than I’d hoped for,” Delaney 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.”

I hope this helps. https://t.co/6DB40oVFEN

— rob delaney (@robdelaney) September 18, 2018

Delaney recounts the events and symptoms that led to his son’s diagnosis, visiting his son at the hospital, they joy he experienced seeing him every day and the ways in which he tried to make his son’s life better.

Henry had an ependymoma — a type of brain tumor that is often fatal. “Henry just turned two. We didn’t dare assume he’d have a second birthday with the prognosis he received after they took out the tumor and confirmed what kind it was,” Delaney wrote.

The operation damaged some of Henry’s nerves, resulting in Bell’s palsy, hearing loss, vision loss and a tracheotomy. Delaney shares with gritty honesty his experience dealing with the medical issues his son had to face, including having to hold his son down and having to suction blood from a tracheotomy tube that needed to be replaced.

The essay ends somewhat abruptly. Delaney explains he stopped working on his book proposal when they saw Henry’s, “new, bad MRI.” His wife and sons wanted to spend as much time as they could with Henry to make sure his final months were happy. “And they were,” Delaney said.

Delaney believed the audience for his book would be fellow parents of sick children. “They were always so tired and sad, like ghosts, walking the halls of the hospitals, and I wanted them to know someone understood and cared,” he said.

The responses to this from parents & siblings of sick kids – and of course kids who’ve died – makes me glad I posted it. There are some very good people in the world and I appreciate all your kind words.

— rob delaney (@robdelaney) September 18, 2018

Since deciding not to publish, he dedicated the few pages he wrote to the community. “I’d still like them to know that, so here these few pages are, for them. Or for you.”