“I turned around at the memorial service, and I said to Steve, ‘Look at all the lives he touched in 18 years without even speaking.’ He never said a word.”
Barg, who had a rare genetic condition, wasn’t expected to survive beyond a couple of months, but his life inspired not only a congregation, but countless of others around the country as well.
He was born with Trisomy 13, a condition in which an extra 13th chromosome is present that left him with a weakened heart and lungs and brain damage. He also was deaf and legally blind. Doctors told Steve and Susan that he would never speak, walk, or feed himself.
Susan estimated that 600 people attended the visitation on Monday. It initially was scheduled for 4:30 p.m. to 8 p.m. but was extended two hours.
“Some people waited in line two to two and a half hours,” Susan says. “I had never even met some of them.”
On Tuesday, roughly 500 people attended his memorial service at Libertyville Covenant Church, where the family attends. Attendees had to be shuttled from the parking lot of a nearby Lutheran congregation.
The people wore bright-colored clothing, as the Bargs requested. “We wanted the service to be a celebration of his life,” Susan says.
The Bargs had made a point of celebrating the life of Aaron, who had several nicknames, including Bud. Nearly every year, they threw a birthday “Budster Bash” at which up to 150 people attended.
His sister, Hannah, 15, had unknowingly bestowed on him the nickname Bubba when she was little because she couldn’t say “brother.” Each of the birthday events was themed, so for his 18th birthday this year, the family put up the website Bubba for President. The site has pictures and videos of his life and even includes his qualifications and platform.
In a 2005 Covenant Companion article, “Confirming Aaron,” Steve told author Bob Smietana that after getting over the initial grief, “We realized early on that Aaron is on a mission from God to change people’s lives.”
He accomplished that mission, leaving an indelible mark on those around him – not despite, but because, of his severe handicaps.
Bill Fish, director of ministry at Covenant Point Bible Camp, says Aaron actually seemed to have a gift of knowing when people needed empathy. “It was like he could process things beyond our cognitive abilities.”
He tells of how Aaron understood the needs of a camper before anyone else did. On the first day of camp, Aaron was in worship with the adults. He could sense light and dark enough so that he was able to move his wheelchair around the room – which he did during the service.
“He’s just wheeling and wheeling around and then he came to an older woman and just stopped,” Fish says. “Then he held out his arms to hug her.”
At that point, no one knew that her husband had died just weeks earlier. She later told Fish, “I was really needing a hug then.”
“He represented the ideal child of faith,” says Libertyville Associate Pastor Brian Zahasky. “He was clearly a light, a real gracious personality. He had an unassuming character that drew people together.”
Going “nose-to-nose” with Aaron was an incredible experience, says Fish. He explains that in order to communicate with Aaron, it was virtually necessary to put heads together so the young man could see.
“He just lit up,” Fish says. “He would just be euphoric because you entered his world.”
Although some people wonder how they would handle being parents of a severely disabled child, Susan says, “Despite all his difficulties, he made it easy to be a mom.”
Although the recent gatherings were celebrations of Aaron’s life, Susan knows the accompanying grief will last for some time, but is certain the family will carry on his “mission from God to change people’s lives.”
Click here to read a previous Covenant News Service story on how Susan ran marathons to raise money to benefit Aaron and other people with severe handicaps.
The family suggests memorial gifts be directed to the Philip J. Rock Center and School, 818 DuPage Boulevard, Glen Ellyn, IL, 60137, or to SOFT (Support Organization for Trisomy and related disorders) in care of Barb Vanherreweghe, 2982 South Union Street, Rochester, NY, 14624.
