Tracy Balnis instinctively jumps out of her chair when her 13-year-old daughter, Gianna, stumbles while walking through the front door of the family’s candy store.
Balnis, however, returns to her chair within a second’s time when she watches her daughter correct herself. On her own. With no help from her mother, even though the girl was born with Spina Bifida and uses braces to walk.
In many ways, this not-so-uncommon scene reflects how the Berwyn mother of nine children-four of them with disabilities-goes about parenting on a daily basis.
“I want them to always know I’m here for them, but they need to do things on their own, too,” says Balnis, who owns Rissi’s Old Time Candy& Toys in Berwyn.
On this day, during a snowstorm, Balnis’ family swirled around the old-fashioned candy store, named after her 3-year-old daughter, Rissi. They arrived in a 15-passenger van, the family car so to speak, after a well-choreographed routine to get them all ready for a road trip.
“It may look like crazy chaos, but it works for us,” says Balnis, whose upbeat, hopeful disposition has anchored her more than any parenting book.
All nine of her children, ages 3 to 24, have delivered their own challenges, though her four with special needs have also delivered unexpected surprises. Gianna uses a wheelchair, 10-year-old Michael Jr. is mute with severe autism, 9-year-old Gabriel has high-functioning autism, and 5-year-old Dominic has mid-range autism.
“He doesn’t talk much and he isn’t potty trained yet, which is the hardest part of dealing with the disabilities,” Balnis says while her son quietly stands next to her.
Just before Gianna was born, doctors gave Balnis a box of Kleenex and told her to brace herself for news of the baby’s expected lifespan: “You’ll be lucky if she lives three days.”
Balnis was in shock, not remembering anything else from that exchange.
Today, Gianna is strolling along just fine, albeit for a brief scare here and there.
“Doctors don’t know everything,” Balnis says flatly. “Remember, they’re only practicing medicine. My daughter proves this.”
Was Balnis ever worried of having more children with similar disabilities, especially because autism runs in her extended family? Not at all, she replies.
“Every time I was pregnant after Gianna, I told God whatever he gives me, I’ll take it,” Balnis says cheerfully as her husband, Michael Sr., helps corral the kids for a rare family photo.
“OK, say cheese, everyone,” he says while making sure they’re all facing the camera.
Michael was an orphan as a child, and Tracy’s father was not in her young life, so parenting comes with extra significance to both of them. They have been together for 25 years and appear to work seamlessly together while raising their brimming brood, including two grandchildren.
All the children attend Chicago public schools, though Michael Jr. gets outside therapy. Their oldest daughter, 24-year-old Anita, helps immensely with the younger children, including overcoming nightly homework and daily obstacles.
“Our two older children were the ones who told us years ago to not give up hope,” Balnis says. “We’ve never forgotten that. Hope, faith and prayers go a long way.”
One Sunday many years ago, Balnis went to church early and joined a special prayer session for a struggling family in the parish. It was only later that she realized the family was hers.
“I had no idea they were always praying for us,” she says with a laugh.
Over the past 13 years, the couple has had to learn the ropes regarding how to find proper services, treatments and therapies for their kids with special needs. It’s meant countless doctor appointments, therapy sessions and meetings with teachers, aides and insurance agents.
“It can be a nightmare to navigate the system, especially when it comes to healthcare and special needs services,” Balnis says. “It’s really a full-time job on its own.”
Balnis may write a book on how to steer around such systemic speed bumps, including school-related challenges involving five different schools and four buses for seven of her kids.
“My first piece of advice to other parents in a similar situation is to create an assembly line, starting in the morning,” she says as Michael Jr. makes a silent motion asking for gum.
Balnis’ day starts before sunrise, getting her kids up, cleaned, dressed, fed and ready for another school day. Dominic is high functioning but has issues with certain food textures. Gabriel also has special dietary needs. Gianna needs help with her socks, shoes, braces or power wheelchair. And one morning, Michael Jr. shoved a breakfast ham down the toilet, followed by soap, forks and toothbrushes.
“I’ll bet I’m the only Chicago parent who has Googled how to get different items out of your own toilet,” she says.
Still, Balnis lovingly calls it “controlled chaos,” acknowledging how it could look like bedlam to other parents.
“You wouldn’t believe the joy we felt when our one son became potty trained,” Balnis says proudly. “If you told me I could have a million dollars or he could be potty trained, I’d say keep your money.”
Michael Sr., a Chicago firefighter, works long shifts, so it’s feast or famine in their home depending on his work schedule. He also does most of the cooking (just like at his firehouse), insisting that certain foods interact better with his children.
“Healthy diets, without so many empty calories, really make a difference,” he says while gently stroking his youngest son’s hair. “Sometimes I’ll sneak vegetables into my meals to make sure they get healthy ingredients. Processed foods are only a treat.”
He also enjoys playing traditional board games with the kids, like Monopoly, Uno and Twister. It helps his boys stay involved in the family’s world, not only their inner world.
“There also is an early learning facility by our home. It’s been a godsend,” he says.
These unique challenges haven’t stopped the family from doing what other families do, such as long-distance family vacations, including to zoos, museums, Great America and even Universal Studios in Florida. Still, some public places are still off-limits for the family when it’s at full force, such as libraries.
“They kind of kicked us out-twice,” Balnis says sheepishly. “Boys can be monkeys, you know.”
Balnis’ other piece of advice is to be as direct as possible with school administrators and other personnel, starting with bus drivers.
“Get their cellphone number first thing so you can talk to them directly, or to the aides, not through the schools,” Balnis says squarely. “This has saved me a lot of headaches. The first school bus comes at 6:40 a.m. and the last one at 7:30 a.m. That’s a lot of looking outside the front window each morning.”
After the school-aged kids leave, she savors her secret joy-spending the rest of the morning with Rissi. No special needs. No therapy. No doctor appointments. Just good old-fashioned, one-on-one parenting time.
“When we’re all together, you just have to go with the flow, like a surfer riding a wave,” Balnis advises. “Some days we ride the big waves, other days we feel like we’re drowning. But we’re always back on our surfboards the next day, and that’s all that matters.”
