Special Spaces: How A Room of Her Own Changed Everything

The Wisconsin chapter of Special Spaces is just one of the many worthy causes recently benefitting from the Civic Media radio network and local station 97.9 WGBW’s support and generosity on Giving Tuesday. But we’re learning more about the reason this particular non-profit holds a special space in the heart of our Civic Media colleague, Connie Fellman, WGBW Green Bay news anchor/reporter.

“When our station manager, Dan Markus, asked me for my input on local recipients for Civic Media’s Giving Tuesday campaign, Special Spaces was the first thing that came to mind,” Fellman says. 

The non-profit organization provides dream bedroom makeovers for children with cancer.  But years ago, Special Spaces also included children with other life-threatening medical conditions, like Fellman’s daughter, Mackay.

Here is where this story takes a twist. And it also helps explain why Fellman feels this opportunity changed everything for her family.

Story by Teri Barr with Connie Fellman

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Listen to an audio version of this story by Lisa Hale:

Mackay suffers from Lymphatic Malformation, or LM, which is described as a tangled lymph system. The back up of lymph fluid causes swelling, which not only creates facial deformity, but also closes off her airway. It forces the Green Bay girl to breathe using a tracheostomy tube and get nutrition through a feeding tube. Mackay was the first recipient of a bedroom makeover by Special Spaces-Wisconsin in 2012.

“Our goal is to provide these children with a special space where they can not only sleep, relax, and recover, but also play and enjoy just being a kid,” explains Cathy Wolfla, Wisconsin State Director for Special Spaces.

That chance to just be a kid and play, in their very own space, can be life-changing, and not only for the child.

“All the work you put into making a cute nursery for your baby when you’re pregnant, kind of goes out the window,” Fellman recalls. “Mackay was at UW Health American Family Children’s Hospital in Madison for three months after she was born.  When we were finally able to bring her home, she came with a room full of medical supplies, respiratory equipment, a feeding pump and a full staff of in-home nurses 24/7.  Her nursery was basically a hospital room.”

That is until Special Spaces came along when Mackay was seven years old. She was old enough to tell Special Spaces she really liked music, bugs, playing dress up and that her favorite colors were lime green, orange and pink. 

“I have no idea where she came up with that,” Fellman chuckles. “She’d been a simple pink and purple kid up to that point. I remember thinking, ‘Egads!’ How are they supposed to make something work with those colors??”

Fellman describes what the Special Spaces team did with Mackay’s room in less than one day, while the family was at the Milwaukee Zoo. She says it was nothing short of magical. 

“We walked into a little girl’s room. It was no longer a hospital room. I just burst into tears,” Fellman remembers. “They’d put a gauzy, pink canopy over her bed and all her medical equipment was hidden behind a polka dot curtain over her closet.  The walls were a beautiful, bright, yes, lime green with an orange chair in the corner for the nurse to do her charting. What Mackay zeroed in on right away though, was the dress up corner.  A princess crown, costumes and a pink feather boa hung on decorative hooks framing a giant purple princess mirror. She dove right in!”

Fellman says she saw something shift in her little girl that day as she explored her very own “special space.”

“It was like she’d found a form of self-expression and confidence,” Fellman explains. “Feeling all the love and support from so many people throughout the community whom she’d never even met but focused on her – as a little girl – not as a ‘rare medical case.’  When I say the experience was life changing, I’m not exaggerating.  Something just blossomed in her, and I have Special Spaces to thank for that.” 

And Fellman says she was grateful to be able to give back to Special Spaces through Civic Media’s Giving Tuesday campaign.

“I am so proud to be part of a company that’s provided me the opportunity to give back and return, even a small portion, of the gift I was given through Special Spaces,” Fellman says. 

Mackay, by the way, maintains her love of music. That little girl is now a sophomore in college, majoring in music at St. Olaf College in Minnesota.  She’ll be home for Christmas break in just a few weeks before leaving for Scotland to attend the University of Aberdeen during the spring semester.  Fellman tells us Aberdeen is in the heart of Mackay Clan territory, the family surname for whom Mackay is named. She hopes to become a music therapist when she graduate.

And by the way — she still has that pink feather boa, too.