Ford tough

COEUR d’ALENE — Casey and Effie Parks are used to questions about their son.

Why is he in a wheelchair?

Has he always been this way?

Or they just look on as Ford Parks rolls by.

“We always get questions, we always get stares,” Effie Parks said.

So this holiday season, they put lights on Ford's wheelchair and Saturday at The Coeur d’Alene Resort, he was popular. He was greeted with waves and smiles and “Merry Christmas.”

“People were wonderful in the lobby with Ford,” said Effie Parks.

Which is nice.

“If there's lights on his chair, it's an invitation for people to go, ‘So cool,’ or ‘Hi,’” she said. “It's something that softens it for people. It makes it feel more inviting.”

“If there's something just light and sweet that people can relate to, it makes their questions less painful. It makes them just be able to say ‘Hi’ rather than just stare,” Effie Parks said.

“Because it's weird how weird people are around a kid in a wheelchair,” she added, laughing.

The Parks family, Casey, Effie, Ford and little sister Ezme, from Mercer Island, Wash., was in Coeur d’Alene over the weekend for the Journey to the North Pole to see Santa Claus, fireworks and Christmas lights with Lake Coeur d'Alene Cruises.

They came last year and loved it, and returned because Ford was fascinated by St. Nick and the ride across the water.

Ford Parks was born 5 years ago and was diagnosed with a rare disease called CTNNB1. There are fewer than 300 people worldwide with this neurological disorder.

“Some of the kids don't necessarily understand as much as Ford but they can walk and they can talk,” Effie Parks said. “Ford's really physically impacted by his disease, while some of the other kids are more mentally impacted.”

He can't sit, crawl or walk on his own so he gets around in his wheelchair, which is one of his favorite things, next to his bike and the school bus.

He can’t speak, so he communicates via American Sign Language and his own creation of signals and movements.

Saturday night at The Resort, Ford rolled himself around the family's room. Wearing a red Christmas sweater with curly blond hair and blue-framed glasses, he stares intently into the eyes of visitors, claps and motions them to do the same.

“He’s a smart kid,” his dad Casey Parks said. “He just can’t vocalize it.”

His parents take turns talking to him and tickling him, which elicits joyous laughter. They understand, for the most part, what he is trying to tell them.

“He also has something called dystonia. So his arms and his legs he can't necessarily control as well as he should be able to,” his mom said. “So yes, he made up a lot of his own signs, but we've figured them out.”

Ford’s parents describe their son as “super smart” and “super resourceful,” a boy who bravely endures challenges few will face.

“It just starts with the laughter,” said his dad, a King County prosecutor. “He has a very special talent for joy, in how he feels it and how he expresses it, is just incredibly pure.”

Life with Ford is full of moments that melt a heart, but also a test of patience and strength.

“We all have our meltdowns when we can't understand what he's saying. That's a really hard part,” Effie Parks said. “And we all can't figure out what he's saying, but for the most part, Ford has done a really good job in figuring out how to tell us what he wants and we've all done a really good job in teaching him ways to say things.”

A routine day for Ford is rising early, taking his medications, breakfast via a gastrostomy tube and then a bus ride to school.

“He gets to ride in his wheelie and goes down in the elevator and then gets on the school bus, and the school bus is like the highlight of his life,” Effie Parks said.

Ford loves Northwood Elementary School, where he receives speech, occupational and physical therapies, along with his general education.

“We're really lucky where we live,” Effie Parks said. "We have a really great school.”

Some days, students take a lap around the school, as one of the teachers is a serious runner.

“They beat Ford, obviously, but they all always double back and then push Ford to the finish line, which is just really special,” his mom said, smiling.

Raising Ford has come with rewards — and trials, too.

“When we were told what his life was going to be like, and what our life was going to be like and not expecting it, it was really, extremely isolating and sad and devastating. That was a really hard entry to motherhood,” Effie Parks said.

Each day, she drove Ford to appointments, which in the Seattle area, was hours of sitting in traffic.

So she listened to audio books and podcasts about many subjects, including raising kids with special needs. She thought she could contribute more than what was out there and a few years ago, started a podcast, “Once Upon A Gene.”

“There wasn't a community out there that I fit into as a parent raising a kiddo with a rare disease,” she wrote.

Effie Parks is proud to share their story.

“I have connected with thousands of families and hear every day how much these stories are helping people on their own journey," she said. "It's all because of Ford and the tenacity and joy he exudes. We have a foundation for our gene now and are raising money to fund a gene therapy in hope that someday soon we can have a treatment for our kids.”

Those connections she mentioned have provided hope.

“We found each other and we share resources and we share stories and we share aches and pains and love and struggle and it's been amazing,” she said.

Effie Parks’ voice is full of emotion as she talks of her visit to Coeur d’Alene.

“I’m here with my beautiful friends who have kids that are the same age as Ford. You know, they're running and jumping, playing, writing letters to Santa. It's different. It's really hard,” she said

Effie and Casey Parks want to give their son the best opportunities in life, so they step up to see to it that he gets them. They are well aware of the daily difficulties — no ramps, narrow hallways, tight corners, doors that slam shut — faced by someone in a wheelchair.

“I think a big piece of it is because there are those little barriers, things that we never think about, and it's just like, is it really that big a deal? But what it does, it just makes it really difficult,” Casey Parks said.

So they fight the good fight.

“We can't not fight for people like him,” Effie Parks said.

Ford, sitting between his parents, laughs. His eyes are wide open, bright with delight.

The joy is unmistakable.

“Ford is definitely special,” Effie Parks said. “He is so special.”

Info: effieparks.com