The rooms that remain: Coping with grief after a child dies

Hutch News

The rooms that remain

Some parents grieve children lost to cancer by preserving precious spaces – their kids’ bedrooms

Oct. 12, 2016
David Pearson's bookshelf

A bookshelf David Pearson painstakingly arranged with some of his favorite things. His mom kept this intact for years after his death.

Courtesy of Amanda Haddock

His Lego men still stand watch, perched at opposite ends of a shelf jammed with autographed baseballs and toy trucks. His clothes still hang in the closet. His shoes are nestled, laces tied, in pockets on the back of a door. His parents still call this space “Matthew’s room,” three years after Matthew Austin died of a brain tumor at age 11.

Two time zones away from the Austins’ eastern Washington home, several boxes sit marked and ready. Inside are a late teenager’s beloved dragon books, his Star Wars poster and replica light sabre. After their house is remodeled, his mom and stepdad will again place those prized possessions in “David’s room,” roughly six years after David Pearson died of cancer at 18.

“If your child is healthy, you probably toss that stuff out when they move out,” said David’s mom, Amanda Haddock, who lives in Wichita, Kansas. “But if your child is never going to make or do anything else, it feels like you should hold some kind of space for him. And you do hang onto his things because that child is not going to produce any new memories.

“You don’t realize how much you associate things with people until the people aren’t there, especially when a child dies,” Haddock said.  

Grieving a young life lost can take many paths. Experts are uneasy about advising a “right way” or “wrong way” to mourn; they tend to suggest ways that feel healthy and authentic. But some routes through the process of despair can be entirely visible in many homes – and quite invisible in others. 

In many ways, the retained rooms of Matthew, David and other kids represent the three essential elements of time following a devastating loss: a past to be cherished, a present marked by a loving placeholder for a missing child, and a future never to be realized. 

Some parents immediately pack up and part with all the clothing, toys, trophies, and trinkets that once filled their child’s life. They may repaint, redecorate and repurpose their kid’s room. This is how they cope. Some parents, like Haddock, retain their late child’s bedroom for years, down to the tiniest details. This is what gives them peace.

Mourning through preserving 

“This seems like one of many healthy ways to grieve a loss – and only one facet of healing and moving forward in the face of what is impossible to imagine,” said Dr. Jim Olson, a brain cancer researcher at Fred Hutchinson Cancer Research Center and an attending physician at Seattle Children’s Hospital, where Matthew Austin was treated.

Based on Olson’s experience with families, he said, “I imagine there are quite a few” who maintain a space devoted to a child who has died.

“I think we all hear about this, and it doesn’t have to be cancer that takes your child for this phenomenon to happen in a home,” said Dr. Colleen Delaney, a Fred Hutch researcher and a pediatric hematologist at Seattle Children’s.

“It’s one way of grieving – just like those who become incredibly active in fundraising and awareness is another way of coping. Both are equally important. It’s an individual experience for everyone. People need to go through their grieving the best way that suits them and the rest of the family,” Delaney said. “It’s not an unusual phenomenon.”

Beyond their labs, both Delaney and Olson practice pediatric oncology. The Hutch Holiday Gala, to be held Dec. 3, will raise money for pediatric cancer research.

“Despite great success in treating and curing some pediatric forms of cancer, many children still face horrible odds,” said Nikki Austin, Matthew’s mother. “My hope is that increased funding will lead to advances in research and no parents hearing that their child has a terminal form of cancer with no cure.” 

Matthew Austin

Matthew Austin and a toy that remains in his room.

Courtesy of Nikki Austin

In Matthew’s room in Pasco, Washington, his collection of ball caps still dangles from five hangers shaped like stars, just above his wooden dresser. A Russell Wilson poster still adorns his wall. Glass jars display a mish-mash of his Lego pieces.

“To me, it’s very meaningful to have those things around and have those things where you can see them and enjoy them,” Nikki Austin said.

“I find comfort in going into his room. I did from day one (after his death). I would spend time, go in there to meditate or just to have that stillness. I just like being surrounded by his things. Not to say that makes me closer to him. But it’s just comforting," Austin said. “I don’t feel like it’s creepy or in a shrine sort of way. I just like to have his things around.”

Indeed, some parents who preserve their late kids’ rooms are sensitive to the notion that keeping toys and treasured mementos as they always were may bump up against societal expectations to “move on” from a tragedy.

But from her vantage point as a pediatric oncologist, Delaney said maintaining a room is, for some parents, a healthy way to manage their grief.

“You also hear stories about when someone has died, no one (in that home) wants to say their name, or no one wants to say they’ve died,” Delaney said. “I think it’s just as important for folks who are going through this grieving period to talk about their child. And perhaps still having a room there is one way to do that, to constantly have them there.”

Lately, the furnishings have been evolving in Matthew’s room, slowly and organically. To accommodate a recent family visitor, Nikki Austin and her husband, Steve, swapped their late son’s small mattress for a larger size. That necessitated a comforter change. Next, they moved a desk from a lower floor into the bedroom, turning it into a partial office. Nikki also discarded some broken toys or playthings for which Matthew had little interest.

“But his Legos – he was so attached to those. So, no, we’re not ready to do anything with those,” Nikki Austin said. “It still feels like his room.” 

David Pearson

David Pearson

Courtesy of Amanda Haddock

In Wichita, Haddock also allowed life’s natural ebbs to nudge her original desire to keep David’s bedroom nearly intact following his 2012 death from a brain tumor. For three years, that basement space contained David’s Star Wars-themed bedding and wall hangings, medieval décor and a bookshelf that the teen carefully arranged with, among other items, two small dragons, a ticket to a screening of “Twilight: Breaking Dawn,” greeting cards, Iron Man figurines, and some of his favorite fantasy novels.

“He really loved reading. His bookshelf stayed exactly the same,” said Haddock, who co-founded with David’s stepfather the Dragon Master Foundation, which seeks to use big data to solve the riddle of cancer. The name was inspired by her son’s love of dragons. “I took a picture of the bookshelf right away (following his death). I didn’t want people to feel like they couldn’t go in and take a book off the shelf. [But] I still wanted to kind of know how he had it set up.”

But even before a 2015 family move and the ongoing home renovation caused Haddock and David’s stepdad to temporarily box up his belongings, the look of his bedroom was allowed to shift in small but important ways.

After David died, Haddock asked eight of his friends to come by the room and pick out one meaningful item each to take and keep. One friend selected a dragon hat. Another picked a game controller David always used. A third took David’s guitar and later wrote a song he dedicated to the teenager.

When her new home is fully refurbished, Haddock said she’ll unpack some of David’s most precious items and decorate a bedroom she’s singled out for her late son. It will have, she said, “a definite David vibe.”

David actually had two bedrooms – one in Kansas and one in Virginia, where he also lived with his father and younger sister, Austin Pearson, now 21. (His parents were divorced). Back east, after his passing, David’s father and sister boxed up his belongings in a few days. They donated his books and almost all of his clothing to Goodwill, holding back a few shirts, a school yearbook, his phone, laptop and autographed photos of his favorite chefs, including Gordon Ramsay.

“We got rid of it all so quickly. It was nice, in a way, to do it because it was all done with. It sounds harsh but it actually helped a lot,” Austin Pearson said of that decision. “Having a giant room with all his stuff out to see is a constant reminder of, hey, he’s not here anymore. So it’s, like, really painful.

“My mom had a different grieving process than me and my dad did. My mom and I may look the same. When it came to that, though, we were like two really different people,” she said.

“But you know, what I think it all says is: There is just no easy to go through this.” 

Nikki and Steve Austin

Nikki Austin and Steve Austin in the Washington bedroom of their son, Matthew, who died 2013.

Photo by Amy Purvis

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Bill Briggs is a former Fred Hutch News Service staff writer. Follow him at @writerdude. Previously, he was a contributing writer for NBCNews.com and TODAY.com, covering breaking news, health and the military. Prior, he was a staff writer for The Denver Post, part of the newspaper's team that earned the Pulitzer Prize for coverage of the Columbine High School massacre. He has authored two books, including "The Third Miracle: an Ordinary Man, a medical Mystery, and a Trial of Faith." 

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