I cannot fathom what you are experiencing. It is a platitude uttered to those enduring the worst of times. Rob Delaney, comedian, co-star, and founder of “Catastrophe,” who in 2018 lost his 2-year-old son Henry to a rare type of brain tumor, wants people to imagine. In the first few pages of “A Heart That Works” (Spiegel & Grau, now available), Delaney writes, “I often find myself wanting to ask individuals I know and care about to visualize a specific child of theirs, dead in their arms.”
The memoir is genuine, sincere, and reveals what is typically unsaid about death – specifically the death of a child. Adrienne Finnegan, 41, whose 3-year-old son Kian died of brain cancer in September, thinks the book’s release could not have come soon enough. The Syracuse native states, “I’ve been counting down the days since the release date.” It gave me language.
“It gave me words,” says Adrienne Finnegan, whose 3-year-old son Kian died in September, of Rob Delaney’s autobiography.
Finnegan characterizes Delaney’s image of a black ring in his particular rainbow of experiences as precisely how she wants her friends and family to comprehend her new perspective. “It’s like, ‘Oh my God, I can finally express it!’ ”
Delaney writes, “I suppose I believe we experience a spectrum of feelings. After Henry’s passing, I still possess the entire rainbow. Name an emotion: I still experience it frequently. Leah and our boys laugh every day. However, there is now a black band in my rainbow that was not there before. Or if it was there, I couldn’t see it before Henry died.”
Rob Delaney rose to prominence as the co-star and co-creator of the successful television series “Catastrophe” (with co-star and co-creator Sharon Horgan). His family relocated to London from Los Angeles while his wife was pregnant with Henry.
Finnegan adds that “black band rainbows” has already become a slang term in her discussions with other bereaved families. It is a way to recognize that life is unique. She also admires the fact that Delaney does not shy away from describing the physicality and anguish of childhood cancer therapy.
Finnegan states, “Many of our own experiences were quite horrible.” “Treatment can be severe and painful.” Finnegan indicates the section of the book in which Delaney discusses his son’s tracheostomy. He had to constantly change Henry’s tracheostomy tube while restraining him, which frequently resulted in bleeding throughout the surgery. “With Henry, I had in reality seen blood break forth from a bullet-shaped wound in the neck of someone I loved very much,” writes Delaney. “Worse than that, I was sometimes the reason that blood was gushing out of that hole.”
Within the terror, dread, and solitude are also moments of levity and connection.
“This is the last snapshot taken of Henry before we discovered he had a brain tumor,” Delaney posted on Instagram. “For our family there’s before this day and after. This is how life is partitioned.”
According to those familiar with the realm of pediatric cancer, these situations are also not discussed as frequently as they should be. One oncology nurse, who prefers to remain anonymous due to patient confidentiality, says that the part in the book where Delaney talks about having sex with his wife while their son is in surgery struck a chord with her the most. “Parents who became pregnant while their child was ill feel so awful that others believe they are enjoying themselves while their child suffers,” she explains.
Although shorter than 200 pages in length, the harrowing book is providing professionals with skills and reminding readers that they are not alone when facing the unspeakable.
Chase Cassine, LCSW, a grief therapist in New Orleans, Louisiana, has already planned to incorporate the book into his clinical practice.
“Grieving is universal, and grief is isolating. What [Delaney] is doing is providing individuals with the tools to legitimize the feeling of grief and to comprehend that grieving and loss are painful, but may also be accompanied by times of happiness, rage, and terror. It helps folks feel less alone.”
Finnegan has discovered that Delaney’s work has given her the confidence to share about her own path, and she hopes that other parents feel the same way. “It requires courage to discuss things openly. Rob Delaney is cooler and funnier than I am. People are pulling away,” she says. “I always worry, ‘How many people have unfollowed me because I make their Facebook feeds too depressing?’” Genuinely, I have a lot of hope and thankfulness, but I’m afraid to write about the angry and grotesque parts. And it’s so crucial because it provides context and helps others visualize how we feel.”
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