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BEN’S STORY

By Jennifer Power Scott
April 9, 2018

It was supposed to be a routine C-section. But an hour after tiny Benjamin Michael George took his first breath on the morning of June 29, 1992, his parents’ world crashed down.

A neonatologist told Mike George and Jan O’Connor-George the child’s head was too small. His liver and spleen were too large. Dangerously low platelets were making his skin turn purple. “You have a very sick baby,” the doctor said. “He may not live the day.”

To Mike, those words were like ice. He remembers feeling abandoned, overwhelmed and ready to explode. He wanted to run, but there was nowhere to go. “Before that day, I really didn’t know sadness,” he says. “I thought I had done all the right things and didn’t expect anything less than a perfect baby.”

The newborn was in an incubator, motionless, with wires and monitors all around. No one seemed to have any real answers. “My first thought was they’ve mixed up babies,” Jan says. “This can’t be my baby because I just had my baby in my arms. But, in fact, it was Ben.”

There were days of tests, and Ben started having seizures. Finally, on the fourth day of the baby’s life, a doctor explained that Jan probably had been infected with cytomegalovirus (CMV) during the pregnancy. CMV is common and many people don’t even know they have it, but for a fetus, it can be catastrophic.

Then, a pediatric neurologist said something crushingly unforgettable: “Ben may never walk, or talk, or go to school.”
Devastated, Jan tried to grasp what it all meant. “You know, will I have a blob in a crib?” she says, tearing up at the memory. “I couldn’t imagine looking at him that it was so severe.”

Mike held Jan tightly, feeling as though he had slipped into a death spiral, believing his dreams for a fulfilling future with her, the baby and his other two children were dashed. His sense of direction and purpose had disappeared. And all he could think was, “Why?”

***

Twenty-five years later, a small white bus drove through the morning mist to the campus of the University of New Brunswick in Saint John. The bus doors popped open by the curb outside Hazen Hall, and a young man in a motorized wheelchair emerged with his two attendants. Ben George was starting another day as a university student.
“A student with his level of challenges has never studied on that campus,” Mike says. “But UNB was willing to help Ben succeed and make him feel he belonged.”

Getting to this point was anything but easy for the George family. Ben’s first few years of life were filled with seizures, surgeries and ambulances, and Mike and Jan sometimes felt beaten to exhaustion. Still, there were many moments of light. “We came to see there was a smart, social, loving person trapped deep inside Ben,” Mike says. “And we were driven to help him express that.”

When Ben was five, he went to kindergarten – with his mother sitting outside the classroom for the whole school year in case he had a seizure. Through elementary school, he was in regular classes, but the family focussed on helping him develop physically. No one seemed to know how to help him academically. “As he moved into middle school, we started to challenge that,” Mike says. “Still, experts told us he had little potential. It was frustrating.”

Then came the turning point: Ben became a student at St. Malachy’s High School in uptown Saint John. “The St. Mac’s years were life-changing,” Jan says. “They were incredible for Ben. And St. Malachy’s staff were incredible, really. They were so creative and really wanted to give Ben exposure to all of the things that the high school students had exposure to.”

At one point in his teens, Ben was able to walk a couple of hundred feet with a red metal wheeled walker. And although he couldn’t talk in the conventional sense, a high-tech “talker” device attached to his wheelchair gave him the ability to express himself a few words at a time with an electronic voice. “He controls it with his eyes,” Mike says. “It was a game changer. After 19 years without a voice, he suddenly had the gift of words.”

Ben stayed at St. Mac’s until he was 21, always part of the regular classroom, always included in school events. “Before St. Mac’s, I didn’t really understand what ‘inclusion’ meant,” Mike says. “I quickly learned it isn’t something that just happens. It’s about having the right attitude, accepting people for who they are, and finding ways for them to contribute and belong.”

With his high school years about to end, Ben went to the prom. And when students in red robes gathered on the stage at the Imperial Theatre for graduation, he was there too. “The first diploma we will present tonight,” the master of ceremonies announced, “is Benjamin Michael George, graduating class of 2013.”

Ben stood for that moment, slowly and triumphantly making his way across the stage with his walker. More than a thousand people got up and cheered. For his parents, it was magical. “I was crying so hard that it was a blur,” Jan says. “We were all there and clapping so loudly and cheering for him. So too was the entire graduating class. They were on their feet and all giving him a standing ovation. I just remember it was an incredible moment.”

The George family wasn’t about to let Ben’s education stall after the successes at St. Mac’s. He was accepted into a Certificate of General Studies program at UNB Saint John. And with grant money from the Department of Post-Secondary Education, Training and Labour, the family hired two full-time assistants to be with him on campus.

The sick newborn who wasn’t expected to survive is now a young man with a meaningful, busy life. He is at UNB six hours a day, five days a week. His assistants take notes in class and help him study. His exams are usually multiple choice or true or false, and he gets extra time to complete them. Ben has taken a wide variety of courses, from introductory psychology to international tourism.

“I’ve always felt that Ben is a genius trapped in a body that doesn’t work,” Jan says. “That just because we can’t understand what he’s thinking, that just because he can’t articulate it, doesn’t mean that there’s not a whole lot going on in his head.”

In a sports psychology class, Ben used his talker to make a presentation with another student, Gracelyn Kaine. “It went well,” she says. “We practiced it a lot, and I don’t think he repeated himself once. I think he was very comfortable up there.”

The professor, Dr. Gary Worrell, gave Ben and Gracelyn 19 out of 20 on the presentation, and Ben’s final grade in the course was an A+. “For me personally as a professor, to have a student like Ben in my class is like opening up a ray of sunshine,” says Worrell. “Thirty-five or 40 years ago, you wouldn’t see a Ben George on this campus. Thank goodness the world can change, and we can all change as part of it.”

Ben’s against-all-odds achievements are getting noticed in Saint John and beyond. He’s the subject of a short film, Including Me: Ben’s Story, and his father’s book, Third Time Lucky: How Ben Shows Us The Way, was published in 2012. Through their new company and website, Soaring Families, the George family is sharing ideas, insights and coping strategies with people all over the world.

The next milestone? Ben expects to graduate from university in 2019. After that, his family plans to help him find a job, possibly as a university research assistant. Whatever happens in his future, he seems destined to continue inspiring people from all walks of life to work harder, never give up, and dream to the sky.

Life isn’t perfect,” Ben explains in a statement he prepared on his talker for the film. “I still meet people who don’t believe in me. My parents still get overwhelmed and discouraged, and there are barriers to overcome every day. But special people seem to show up at the right time, and that’s what helps most. My Dad says if you can dream something up, there’s always a path to get there. Step by step, we are finding our way.”

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