Faist family is fighting for inclusion

Ian Faist is like any other 7-year-old first grader. He plays baseball in the summer, looks forward to family trips to area playgrounds, and gets rambunctious when playing with his 3-year-old sister, Morgan. 

He’s probably not aware that before any outings, his parents, Aaron and Marilee Faist, do a careful check to make sure the venues can accommodate his needs.

Ian has used a wheelchair since he was 3 years old. He relies on a urinary catheter, which his parents have to change every three hours. His birth changed his parents into advocates for Diversity, Equity, and Inclusion (DEI) issues.

Ian’s story, and his parents’ growth into advocates, begins in 2016. 

Two weeks before Ian was born, his parents learned he had spina bifida, a condition in which a developing baby’s spinal cord fails to form properly. In spina bifida, the backbone that protects the spinal cord doesn’t form and close as it should.

In November 2016, he was born at the University of Michigan and underwent his first surgery when he was a day old.  

Ian came home to Sebewaing for two weeks but shortly before Thanksgiving, Ian started having trouble breathing. His parents took him to the hospital, where doctors diagnosed Ian with Chiari malformation, a condition in which the brain tissue extends into the spinal cord.

Eventually, Ian was transferred from McLaren to Covenant HealthCare and then flown to the University of Michigan. In Ann Arbor, the then-month-old baby underwent his most complicated surgery to relieve pressure on his brain. He came home again just in time for Christmas.

Ian Faist had his first surgery at a day old. Today, he's a thriving first grader, but his family still faces challenges. (Photo courtesy of the Faist family)The family got a short break, but in mid-January, Ian had trouble breathing again. This time, Marilee was home with her mother and had to perform CPR on Ian while Aaron raced home. Ian stayed in the hospital until mid-April.

Since 2017 his health has been stable. The COVID-19 pandemic was tough as the family didn’t feel safe spending time in public before the vaccine was widely available. 

Today, thanks to the vaccine and inclusion programs at the Tuscola Intermediate School District, Ian is a first grader at Highland Pines School in Caro. He plays baseball on the Middle of the Mitt Miracle League in Midland. The family goes to baseball games at Loons Stadium in Midland. Ian even got to play a game with members of the Loons team. 

“That was really great to see,” Marilee says.

When possible, the family takes full advantage of the inclusive playgrounds throughout the area. They enjoy Play City at Veterans Park, a playground that opened in 2020 with equipment that accommodates kids of all abilities.

One of the biggest obstacles they face, though, is the lack of accessible bathrooms.

“That’s one of the things that’s really missing,” Aaron says. “It’s been one of those things that’s been tough.”

Before they take the kids to a new playground, they have to research the bathrooms to make sure they can accommodate Ian's wheelchair.

Bathrooms aren’t the only obstacle the family faces. They once took a vacation to Mackinac Island. The Island is known for its ban on cars and old-time architecture. While it’s beautiful, that old-fashioned architecture isn’t easy to navigate with a wheelchair.

They also took the kids to Tahquamenon Falls, but Aaron and Marilee decided carrying Ian up and down the steps to see the Upper Falls was too much. Instead, they stuck to the Lower Falls. 

Each trip worked out well, as the kids enjoyed the island and had fun playing in the water at the Lower Falls. Still, Aaron says the trips illustrate why he and his wife are always on the lookout for activities that work for the entire family.

“It is good to have things like that,” Aaron says. “But we have to keep it in the back of our mind. We’re always looking for things that we can do that are wheelchair accessible. We have to look and plan.”

The Faists are quick to express gratitude for the opportunities that exist in the Great Lakes Bay Region. They love the Miracle League and inclusion day at the Great Lakes Loons. They take full advantage of area playgrounds near accessible bathrooms. 

“We’re very grateful for the things we do have,” Aaron says. “Obviously, we’d love to see more and more.”

Ian’s mom and dad are especially concerned about what opportunities he’ll find when he’s too old for playgrounds and for his parents to take him to the bathrooms. 

“I try to look to the future,” Aaron says. “There might be other things he would enjoy more when he’s in his 20s.”

Aaron also points out that accessibility is a Diversity, Equity, and Inclusion (DEI) issue. Many agencies, including Aaron’s employer at the Bay Area Community Foundation, are actively addressing DEI concerns now. 

Aaron and Marilee point out the DEI focus is good for more than just their family.

“Statistically, one in four people will have a disability in their lifetime,” Aaron says. “We’re not built to last forever and ever.”

Changing tables sturdy enough to hold an adult would make a big difference for families. Even better are family bathrooms so more than one person can help.

“It makes life a little easier when we can do things together as a team,” Aaron says.

Adds Marilee: “It’s 2023. There should be changing tables in all bathrooms. I never even thought about that before I had kids.”

They hope that telling Ian’s story publicly will bring about change and make the world more inclusive.

“This is not a population that should be segregated at all,” Aaron says. 
Enjoy this story? Sign up for free solutions-based reporting in your inbox each week.

Read more articles by Kathy Roberts.

Kathy Roberts, a graduate of Central Michigan University, moved to Bay City in 1987 to start a career in the newspaper industry. She was a reporter and editor at the Bay City Times for 15 years before leaving to work at the Bay Area Chamber of Commerce, Covenant HealthCare, and Ohno Design. In 2019, she returned to her storytelling roots as the Managing Editor of Route Bay City. When she’s not editing or writing stories, you can find her reading books, knitting, or visiting the bars of Bay County. You can reach Kathy at editor@RouteBayCity.com