How a St. Charles mom is celebrating the memory of her 3-year-old son

Nothing could prepare Elizabeth Gerlach for the pain of losing a child.

Not giving birth to premature triplets, one of whom was later diagnosed with spastic quadriplegic cerebral palsy. Not watching helplessly as her son, Ben, also developed epilepsy, required a breathing tube and struggled with respiratory problems. Not bouncing between therapy sessions and hospital visits - eight in the final 18 months of his life.

Each time, Ben always became strong enough to come home to St. Charles. His mom never imagined that one day, he wouldn't.

When Ben died in May 2016, just before the triplets' fourth birthday, his family's world turned upside down. Gerlach tried all the suggested coping mechanisms - grief meetings, support groups - but commiserating with strangers didn't seem to help.

Instead, she starting thinking about how she could give Ben's short life a purpose, how she could share his light with others.

“He was mine for a reason. He was designed as he was for a reason. And he died for a reason,” Gerlach said. “So what is that reason?”

Three years, two “Ben's Adventures” books and one foundation later, Gerlach isn't done searching for the answer.

Ben Smiles

Bright lights. Movement. Loud noises. The outdoors. His preschool class. His family.

Ben was nonverbal, lacked fine motor skills and faced many other challenges, but there were some things that never failed to make him happy. Even on the bad days. Even when he was in pain.

“Through it all, he had a positive outlook,” Gerlach said. “He just had the biggest, best smile.”

About a year after Ben's death, Gerlach and her husband, Rob, decided to launch the Ben Smiles Memorial Foundation, a nonprofit aimed at providing adapted toys and communication devices for children with disabilities. Those tools typically are expensive and aren't covered by insurance, she said, but they can be critical for a child's development and quality of life.

Families nationwide can apply through the foundation's website, where they're asked to explain their child's age, diagnosis, therapeutic goals and other factors that help the Gerlachs match them with an appropriate device. Ben, for example, had limited functional arm movement and was unable to grasp objects, Gerlach said, so he enjoyed cause-and-effect toys that would light up or make a noise by touching a button.

Delivering the foundation's first toy was tough for Gerlach, who immediately thought of Ben when she met the recipient. The girl had a similar diagnosis, had similar movements and responded to her mom similarly. And then she smiled.

“It was like him in female form,” Gerlach said. “I looked at her, and I saw Ben.”

Gerlach left that day feeling overwhelmed and emotional. But with each new toy she delivered or shipped to a family in need, with each child she saw smile and each parent who expressed their gratitude, she felt a bit more joy.

“That's what helps me,” Gerlach said. “Giving Ben a purpose and still sharing him with others.”

Ben's Adventures

Ben may not have been able to play or communicate the same way as his siblings, Colin and Ava, but that didn't stop them from including him in play time and smothering him with love.

The trio went with their parents on family vacations to the beach. They attended the circus together, went trick-or-treating together and looked out for each other.

“There were always three of them,” Gerlach said. “So when we first lost Ben, I'd look at the two of them (Colin and Ava), and it was like, something's missing. The world is not right anymore.”

Over time, the family started adapting to their new reality without Ben. But Gerlach held on to the snapshots of their lives as a family of five, making them the basis for a series of children's books featuring a young boy in a wheelchair.

The idea for the “Ben's Adventures” series came to her just months after launching the Ben Smiles nonprofit. Gerlach worked with an illustrator to develop a set of characters she loved, including the protagonist, Ben, a triplet with cerebral palsy and the same characteristics as her son.

In the first book, self-published in May 2018, Ben imagines taking a trip to the beach, where he flies a kite with his dad, looks for shells with his brother and sister, and experiences the sun, sand and wind.

The second book, due out soon, features Ben dreaming about his preschool classroom as a circus, with tigers and trapeze artists and the teacher as the ringmaster. That story aims to honor educators who give special attention to kids with disabilities, Gerlach said.

Gerlach has a list of ideas for continuing her series, including having Ben imagine that he's in an Army tank - a concept largely inspired by his third Halloween when his mom built a tank around his wheelchair.

“I want it to mirror, or at least give a nod to, what we experienced as a family,” Gerlach said.

But the “Ben's Adventures” series also serves the greater purpose of representing children with disabilities and showing they still have imaginations and experiences, she said. Some of the proceeds from book sales also go toward Ben Smiles.

“I'm just hoping to let people know about (Ben) and create a legacy,” Gerlach said. “I wanted to share his smile with others and hopefully bring joy to other families.”