BELFAST, Maine — Brianna Spaulding, 8, loves normal girl stuff, such as fashion, her brand-new kittens, riding her bike, twirling like a ballerina, Barbie dolls and going for swims.
But she also has had to cope with some serious illnesses that make acting like a normal kid very hard to do. The lively, gap-toothed youngster has a mitochondrial disorder, which causes muscle weakness, pain and gastrointestinal issues, among other problems. She also has dysautonomia, a condition that causes her nervous system to malfunction.
Brianna has had 25 surgeries and medical procedures in just two years. Her mother, Shanna Grindle, said that for a while she was spending as much time in the hospital as at home.
“Brianna is amazing. She’s strong, and she’s full of faith,” Grindle said at their home Tuesday. “I think that’s what’s helped her get through each and every day.”
Lately, something else that has helped is the fact that Brianna has been selected to co-write a brand-new children’s book, thanks to a national nonprofit organization called the Red Fred Project. The group has a goal of having 50 children with critical illnesses in all 50 states be “the creative” and help write a book with founder Dallas Graham. The Salt Lake City, Utah, designer and photographer said this week that Brianna’s book will be the eighth in the series.
“Why are we doing this?” he wrote on the organization’s website. “Most of these children will not become firefighters, doctors, cheerleaders, vets, baristas or teachers due to their illnesses and physical challenges. But these children have creative, powerful, inventive minds and spirits. They know incredible things because of their life challenges.”
Brianna does know incredible things, he said in a telephone interview. He came to visit the girl and her family in June, after he learned about her from one of Grindle’s distant relatives, and came away impressed.
“These kids, they don’t want to be identified with their disease. But a lot of times we do that unconsciously,” Graham said. “Brianna was so, so funny. She was so silly. In the midst of having something very challenging, physically, it’s so fun to see the energy of how they live day-to-day — what jokes they tell. This girl plays hard, she laughs hard, she lives hard. That was very apparent and lots of fun.”
Brianna’s book is still in the process of being written and does not yet have a title, but there were a few elements she and Graham shared. It includes magic, a river made of soda, a horse and sea glass that has special, transformational powers.
“The general themes were feeling love and magical surprises,” he said, adding she took him to visit a nearby farm to see the horses and to the Belfast waterfront, where they hunted up translucent, colorful bits of sea glass.
Brianna, whose initial shyness quickly gave way to a general air of sassy rambunctiousness, fixed her hair just right Tuesday — the princess way, with a fancy bun and hairspray. She showed off the cardboard box full of snoozing kittens, just a few days old, which her cat Jasper Candito Grindle had under the hospital bed in her bedroom, and teased her mother and stepfather, Gregg Grindle, to let her go outside to ride her bike.
“I can do it without training wheels,” Brianna said. “And I can swim without a life jacket.”
But Shanna Grindle said it was too hot outside for Brianna, whose body cannot regulate temperature very well. She had to go to the Barbara Bush Children’s Hospital at Maine Medical Center in Portland over the weekend after getting dangerously dehydrated, which can happen easily. Brianna also suffers from nerve damage in her colon, large intestine, bladder and legs, meaning she has an ileostomy bag attached to her belly to collect bodily waste. She can only eat food the consistency of baby food.
“I love broccoli, but I can’t have it,” Brianna said — and she wasn’t kidding.
She and her 10-year-old sister, Julieanna Spaulding, confided that one time when they were shopping at an area store an employee thought Brianna was shoplifting by hiding something under her shirt. It was the ileostomy bag. The girls said they don’t like to go shopping very much anymore.
Shanna Grindle, who home-schools her children, said her family counts the strong support of the Crossroads to Calvary Church in Morrill as a blessing.
“Everyone’s going through a battle,” she said. “You just don’t know what it is. You just have to treat people the way you want to be treated, because you just never know.”
When Brianna’s book is published, Graham will return to Maine to host a festive book-signing with his co-author. The proceeds from the book’s sales will be used to help defray her medical bills.
“I am very excited to see the book,” Grindle said, adding that Brianna put a lot of time and thought into the project. “She would sit and talk about it for months. She had a lot of ideas.”
For more information about the Red Fred Project, please visit the website www.redfredproject.com.