Celebrating Her Loving, Wild, Red-Headed Boy

Toni Burkholder talks about the son she had after quadruplets and the brain injury that reshaped their lives.

Toni Burkholder says that having quadruplets was nothing compared with her fifth child’s traumatic brain injury. In 1994, 19 months after she gave birth to quadruplets — two boys and two girls — she had Mark. He had flaming red hair, unlike any of his siblings, and he was outgoing and full of moxie from the get-go. He was a daredevil, always trying to keep up with or surpass his big brothers and sisters. His mantra in life was to have pure, unmitigated fun as much of the time as possible. According to Toni, Mark hated school from day one, but was lucky enough to be one of those kids who got good grades without having to try too hard. He was popular, loved sports, and lived life as if his hair were on fire.

Skitching

As a teenager, Mark continued to love anything that involved going fast, and winning. He played basketball and lacrosse, and reveled in the feeling of flight when careening down hills on his snow- or skateboards. One thing he loved to do, though his parents told him countless times not to, was skitching — hitching a ride by holding onto a car’s bumper while riding a skateboard. The faster, the better. One Friday night in August, when his parents were out watching his sisters cheerleading, Mark, then 15, decided it was a perfect time for some skitching fun. His brother’s friend was driving, his brother Kevin was in the passenger seat, and off they went, Mark on his beloved longboard crouched behind the car, feeling his adrenaline surge as the car gained speed. When the car slowed, somehow Mark lost his balance and hit his head on the pavement. He lost consciousness for about 30 seconds then promptly started screaming and vomiting. He had not been wearing a helmet.

When the ambulance arrived, the paramedics had to restrain him. He was thrashing around and they wanted to prevent further injury. Being held down made him fight more for his freedom; he had never liked rules or being made to keep still.

When his parents arrived at the hospital, Mark was awake. He knew their names. He was coherent, but restless, anxious, and yelling. One of the nurses, who coincidentally had been a babysitter for the Burkholder kids when they were young, told Toni and her husband that Mark had a skull fracture and a bad concussion, but that he’d be okay.  During the next eight hours — his diagnosis changed significantly and turned critical.

Toni’s memories of those first days in the ICU after Mark was hurt remain a blur. What memories she does have are not clear, or linear; it’s as if in those hospital rooms and corridors, time was lived backwards, or frozen, or just strangely off-kilter. You wait a lot. You cry. You pray. Monitors beep and you wait some more and watch and feel absolutely helpless.

After six months, being in the ICU, and then in rehab, after a craniotomy, the threat of needing a liver transplant, countless hours working excruciatingly hard in rehab and then some hours peacefully stroking Ansley, the therapy dog, when only his left hand worked, Mark returned home.

Tearjerker

“I remember one doctor at the hospital in the early days of Mark’s injury asking if I had the ability to make handicapped adjustments to our house,” says Toni. “I was livid. We didn’t know what Mark’s outcome would be and here she was planting this negative seed. It was not what I needed to hear. It had only been one week!  He wasn’t even out of a coma. Why say that to a mother of a severely injured child? Why not plant hope instead? I still don’t talk to her to this day.”

And although recovery from brain injury feels glacial to the injured person as well as for the family, Mark made strides that surprised everyone. At Thanksgiving, when he was still inpatient, he couldn’t eat and whoever was around him had to use a cloth to wipe the drool from his face. By Christmas, he was eating, and the cloth had long been retired. On February 23, Mark returned home and returned to school only a few weeks after that. Nothing was easy, he had therapy daily, an aid at school, and trouble sleeping (which has not abated), but tenacious, wild, red-headed Mark managed to graduate with his high school class. In fact, at Mark’s graduation, the school principal, who had been incredibly supportive since the day Mark was injured, said in her speech that the school had many great students … some National Merit scholars, others championship athletes, but the student’s biggest accomplishment was the way they responded and continue to help Mark Burkholder find his way back to life. “It was a real tearjerker for all of us, as you can imagine,” says Toni.

Charlie’s Angels

When Mark was first hurt, Toni says she avoided going online to read about brain injury and outcome. “I didn’t want to read horror stories. I didn’t want to puncture what hope I did have,” says Toni. “But looking back, I wish I had. I could have learned more ways to help Mark and all of us during those terrible first weeks and months.” Now, she said, she’d recommend to other families in the throes of a brain injury to arm themselves with knowledge … and hope. “I remember when I’d walk through the glass doors every day when Mark was in the ICU; well, I’d burst through like one of Charlie’s Angels. I’d sort of strut, breathing in the power of knowing that I was there to do my job, to do anything to help Mark get better.”

Friends and family helped, too. “Mark has a large core group of friends who to this day have stuck with him,” says Toni. “They still come to the house and throw a football around or laugh about whatever boys find funny. I am incredibly grateful for that. I know that is not always the case.”

Bittersweet

Toni says she is a positive, forward-looking person by nature, but she won’t deny the losses that have come with Mark’s injury. “Through all this, we have tried to keep life for our other four children as normal as possible,” says Toni. There were college visits, sports, proms. “It was bittersweet, though. I was so happy for these four reaching milestones and celebrating things like college acceptance letters and going to prom, but they were things, too, that I knew Mark would never be able to do.”

Mark continues to make progress. He lives at home and attends a day program that gives him the structure he needs. He rides a bike again and is diligent about working on the weakness on the right side of his body. “Physically, he’s doing really well, but unfortunately, we can’t trust him to be by himself, mostly because of his significant short-term memory problems,” says Toni. “We’ll have a great conversation with him over dinner, but two hours later he can’t remember the meal or the topic.”

Mark can never remember what he did all day at his day program, though he says he enjoys it. “It’s like a camp setting. They go swimming, bowling, ballroom dance, that sort of thing,” says Toni. “Mark is the only one with a brain injury. Health-wise, he’s a lot stronger than most of the others there — some of whom are in wheelchairs, can’t communicate, or are severely disabled. It’s the best place near where we are, but it would be better if he could make friends with more high functioning people. I think that would help him.” Toni is working to advocate for Mark and others like him with TBI who could use a day program that would be better suited to their needs and goals.

Toni is frank with her four older children about Mark’s needs. “I tell them that their dad and I won’t be here forever, that they will have to take over someday,” she says. Life isn’t always fair, she tells them, but family is family.

The good stuff

As a kid, Mark was a momma’s boy. He demanded Toni’s attention and had always been a loving, caring, and energetic kid. He is still all that — though, Toni says, he replaced his love of reggae with that of Christian music, a mystery and a source of inspiration to the whole family. “Mark has an incredible vocabulary and he’s always making us laugh. He’s fun to be around. I do mourn what is lost, what could have been — it can be painful to sit with those feelings — but he’s here, we love him, he’s our Mark. There’s plenty of laughter and plenty of tears,” she says. “And our family has become closer. In some ways, he has shown us what love means, right now, in this moment.”