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Friday, Oct. 24, 2014

Brain injury changes the lives and tests the faith of a Draper family

By Amy Donaldson, Deseret News

Published: Sun, July 20 12:30 a.m. MDT

 Chris Benda, Pete Benda's mother, shows the ample eggs produced by their chickens at their home in Salt Lake County on May 6.

Chris Benda, Pete Benda's mother, shows the ample eggs produced by their chickens at their home in Salt Lake County on May 6.

(Jeffrey D. Allred, Deseret News)

DRAPER — Awash in uncertainty, overwhelmed by fear, Chris Benda spent the days after her youngest son’s head injury left him in a coma beating back the kind of questions most mothers can’t even consider.

“I was a mess,” she said after her youngest son, Pete, fell 30 feet while working on a theater set at Juan Diego Catholic High School Oct. 26, 2012. “I kept thinking long-term, will he ever drive? Will he ever be able to get married? Will he ever do another family vacation?”

And as the days passed and Pete remained in a coma, she started to consider the worst-case scenarios.

“As Pete didn’t wake up and didn’t wake up … doctors told us they didn’t know,” Chris said. “I thought, ‘You’re so educated how can you not know?’ But with a brain injury, they just don’t know. Every new person who came in, I’d ask the same questions. They said, ‘We don’t know if he’ll wake up.’ They said, ‘Number one, we’re going to warn you, it’s going to be a slow, slow recovery. It’s going to be a marathon. It’s not going to be a sprint. We can’t tell you what the outcome will look like.’ ”

Though naturally an optimist, Chris Benda began wondering even if her 14-year-old son did wake up, would he have a life worth living?

“You start thinking, and this is horrible, but how can I end this for him?” she recalled. “I don’t want him to live like this anymore. And a mom should never have to think like that. A mom should never be asked, ‘What was he like before?’ And I still get that.”

It was one of those doctors without any answers who threw her an emotional lifeline.

“I asked him, ‘Is there any hope for him? And he said, ‘All I know is that if he was my boy, I’d have all the hope in the world.’ And that’s what kind of kept me going.”

A life-changing accident

Chris Benda worked as a first grade teacher at St. John The Baptist Elementary School, which is in the Skaggs Catholic Center that also houses Juan Diego. She was in the cafeteria, adjacent to the auditorium, when she heard the 911 call over a radio carried by an administrator.

She didn't respond because she didn't want to get in the way.

Someone came out and yelled to her, “Chris, it’s Pete.”

Often the object of teasing, she didn’t believe her colleague. When the other teacher insisted, Chris ran into the auditorium.

Her memory of those first hours is a jumble of crystal-clear details and muddled images.

“Pete was laying there and he was blue,” she said. “They were starting to do CPR on him. I thought he’d been electrocuted because I didn’t see the lift.”

Pete was working on a set for the high school’s play when a lift holding him 30 feet in the air tipped over on the stage. He suffered a compound spiral fracture to his femur and a type of brain injury that leaves survivors in a vegetative state 90 percent of the time.

“I started screaming, of course, and I was running to him,” she said. An administrator ran past her to get to Pete before she did, and it caused her to stop shy of the stage.

“Then I knew I had to back away because there was nothing I could do,” she said. “I just screamed. I wailed. … Every kid in that school is probably traumatized, not from Pete, but from Mrs. Benda screaming. That still haunts me because I didn’t handle it well.”

As Chris sat nearby with another teacher, she sobbed and wailed as she listened to school and medical personnel work to save her son.

“I could hear them yelling, ‘Pete, stay with us,’ ” she said. “Then they yelled to me, ‘Let him know you’re here.’ I said, ‘Pete, mom is here.’ ”

Pete Benda was taken by ambulance to IMC in Murray while another teacher drove Chris to the hospital. Her husband, Rob, and other older children, Jake, 21, and Chalis, 19, met her in the emergency room. While they waited, their friends, family and Juan Diego community rallied to support them in ways they couldn’t even anticipate.

“Rob and I were both lost,” Chris said. “We didn’t know what to do.”

One friend, Susan Meyer, who worked as an aide in Chris Benda’s first-grade classroom, quit her job to help the family navigate the medical maze they now faced. Other friends took over walking their dogs on a daily basis, while another family stepped in to take care of Pete’s chickens.

That night, there was a hot meal at the house, and thanks to the organizational skills of another friend, Chris said she didn’t have to cook a meal until March 31, 2013.

“That’s amazing. I have a ton of amazing friends,” Chris said. “Rather than asking, ‘What do you need?’ They just did it.”

Finding peace in the pain

In the first few days after Pete’s accident, Chris wondered how she’d offended God.

“When he was first hurt, I wondered what I did wrong,” Chris said. “Did I do something mean to somebody? Was my faith not strong enough? I prayed all the time. It was ‘I don’t understand why? What did I do?’ I was starting to make promises, then you start to doubt your religion, you start to doubt your faith.”

Devout Catholics, Chris said the family was buoyed by the prayers of family and friends of all faiths, even as she struggled with questions. That’s when a friend did something for her that eased her angst.

“She came to me and said, ‘Chris, you go ahead and doubt your faith. You have enough people praying for you, they’re going to keep you up. You have to question. You have to ask why did you do this? You’re so mean. That’s OK. We’ve got you covered. You can be mad at God; you can swear at God; you can do what you need to do because when you’re dipping down, we’re going to carry you up here with our prayers. Your faith is OK.’ That was a huge burden off of me. I felt like I could question without a penalty. I felt like if I challenged my faith, something worse was going to happen. But after that, I felt I could challenge it and still get through it, still know it was OK.”

The community support — physically and spiritually — was vital. The prayers of people she knew and loved, as well as the prayers of people she’d never met, sustained her.

And while many days seemed hopeless as she sat by Pete’s bedside, her son unresponsive and unmoving, she held tight to advice offered to her by the mother of another child with a traumatic brain injury.

“You can’t look too far ahead,” she said. “Just find the positive in every day.”

The long road to recovery

Pete’s brain injury, the Bendas would learn, gave him little chance at a normal life.

“The only way I can describe it is shearing,” Chris said. “He hit his head so hard, and it bounced back so everything kind of tore, there were small little tears all over his brain. There were multiple bleeds in his brain, not just one spot that was damaged. … That was the worst kind you can have, so I was expecting the worst.”

Pete spent two and a half weeks in the ICU at Intermountain Medical Center in Murray. He was never alone, but the Bendas also had to be careful about visitors because he needed a calm, quiet environment in which to heal. Friends and family set up in the waiting room to support the family while not overwhelming Pete.

About two weeks in, doctors performed surgery on his broken leg, and it was then that they told Rob and Chris to start looking for a skilled nursing facility for their teenage son.

After some research, including a few visits, she realized she could not do what was being asked of her.

“That sent me into a whole (new) spiral,” she said. “That’s a nursing home. That’s for old people. You’re not going to put my boy in a nursing home. … Again, I thought, I need to end this for Pete. How do I do that?”

She asked anyone and everyone their advice, and all of the nurses she consulted told her not to put her son in a nursing facility.

“He was still storming,” she said. “His heart rate would go up really fast, he was foaming at the mouth; it was scary. I’m thinking of all these medical issues.”

Chris Benda said she asked a friend to help her find an appropriate place on a weekend. On Monday, that woman told her Primary Children’s Hospital was the place Pete needed to go. He was transferred there, and while he wasn’t responsive to anything, the staff worked furiously to find ways to reach him.

“IMC saved his life,” Chris said. “Primary’s saved my boy.”

There were many instances of hope during their 111 days in the hospital, but one of the most significant came on Christmas Eve, when Bishop John C. Wester, leader of the Catholic Diocese of Salt Lake City, visited Primary Children’s Hospital to administer a blessing to Pete.

On the year anniversary of his accident, Pete told the story to his classmates at Juan Diego in a speech where he talked about the power of prayer.

“If you don’t believe in miracles, I hope my story changes that,” he said in that speech on Oct. 26, 2013. “I showed I could feel the prayer because I made the sign of the cross. Everyone in the room was crying. It was amazing because this was the first time I reacted to anyone or anything.”

A few weeks later, on Jan. 6, the entire Benda family had taken Pete to dinner. Rob sat in the back seat with Pete, moving his head into different positions, hoping this would help him find his voice.

“He made a sound,” Chris said. Moments later he said his first word — mom. “All of us were sobbing. We called everybody. It was just amazing.”

That seemed to unlock something in Pete’s mind as his progress moved more quickly. Eventually, doctors told the family to start looking for outpatient rehabilitation because Pete could go home.

“Physically he looked pretty good, but cognitively, he was so, so far behind,” Chris said. “It was almost like bringing home a toddler.”

Exceeding expectations

Pete Benda doesn’t remember saying it.

But the words he uttered in January 2013 became his mantra for healing.

“I will win this thing, no matter how hard or crazy it is, I swear,” Pete said on a recent afternoon. “I said that the first day I started speaking. Our good friend, Kay Kearns, she wrote it down. I don’t remember it. But I’m glad she did. I’m glad she was there that day.”

With every accomplishment, Pete Benda defied the odds. Every day seemed to be a mixture of accomplishment and disappointment punctuated by frustration. Four hours of rehab each day began paying remarkable dividends last spring and summer. In May 2013, just seven months after his accident, he ran a 5K benefiting the Brain Alliance of Utah.

“That was just amazing,” his mom said. “Every year, as a family, we (run) the Park City Half Marathon, and in August, he did it. … There were a lot of milestones in that first year.”

He made so much progress during the summer of 2013, therapists recommended he enroll part time in school. It was a scenario no one imagined possible for Pete just nine months earlier.

“I was thrilled,” Chris said. “I was scared. It was very mixed feelings.”

After investigating a number of options, she decided to send him back to the place he’d been since he was in diapers.

“Juan Diego, that’s home for all of us,” she said. “I taught there, our older kids graduated from there, and every single person knew Pete. Pete has so many moms he doesn’t know what to do. Whether he learned or not, I didn’t care. I just needed him to have that social interaction and be safe.”

The school hired an aide to help Pete navigate his sophomore year, and by December, he was at school all day working on a part-time schedule. In February, his parents, with the permission of doctors, agreed to let him return to the lacrosse field. Chris acknowledges trying to balance her fear with her son’s need to reclaim at least some aspects of the life he once lived.

“I know people criticize us behind our back,” she said, rattling off the precautions they’ve taken, along with the coaching staff, to protect Pete as much as possible. Juan Diego's junior varsity coach Dan Mannix has known Pete most of his life and said his size, his position and the precautions the staff took gave him the opportunity to play a sport he'd been very skilled at before the accident.

"He's an exceptional kid," Mannix said. "It's a miracle he is where he is."

His goal was to challenge Pete and give him opportunities to grow socially. And while he was cautious, he tried to give him as normal an experience as possible. While some on the team struggled with Pete's place on the team, others embraced him and tried to help him deal with frustrations that arose.

"That made those kids better people," he said, acknowledging the accident was traumatic for many teens at the school. "And those are the things that are important for me, to be a better person. At the end of the day, lacrosse is just a game."

Weighing risk is something Pete will have to do the rest of his life. And the reality is that there are no guarantees when it comes to a brain injury, even if Pete lived a sedentary lifestyle.

“He’s got to be able to have a normal life,” Chris said. “His coaches know his limitations. He needed that social interaction; he needed to be part of a team. It was huge for Pete. The varsity coach, six weeks in, said he’d seen a huge change, the way he’s communicating, his physical abilities. The positives outweighed the chance that he might get hurt.”

Pete’s brain injury makes a lot of things difficult. From deciding what he wants for dinner at a restaurant to knowing when something he says is inappropriate, he relies on everyone to teach him.

Pete said the most difficult part of his recovery is reading. As he talks about his challenges, including learning to control his temper and maintaining a thought in a conversation, he shows both his sense of humor and his sensitivity.

He said he enjoys playing lacrosse, but what he’s passionate about is ceramics.

Pete gathers up his most recent creations and lays them out for visitors, explaining the inspiration for his favorites, including a busty mermaid named Helga.

He brings a room to laughter, sometimes unintentionally, with his insight and blunt assessments. It is both immensely charming and a sign that he's still trying to sort out societal expectations.

Changed faith, changed lives

When asked about what part of his life is back to normal, Pete responds softly.

“Nothing is, unfortunately,” he said. “I don’t know, God’s wishes, converge into a human being, wait, that’s not even close to correct.” He and his guests burst into laughter, and he said he’s not sure where he was going with that thought. Instead, he begins to tell a story about writing a song last summer and how it made his parents cry.

Chris Benda said the depth of her gratitude is inexplicable. She knows she is fortunate for many reasons and in countless ways. But she also knows the life she had is gone. Her son’s traumatic brain injury didn’t just change his personality, his potential and his capabilities. It changed the entire Benda family.

“He looks like a normal 15-year-old boy but he still has a long way to go,” Chris said. “I told someone the other day, I’m never going to say no to Pete. We’ll set goals, and we’ll find out (what’s possible).”

Pete’s speech to his classmates last fall was about the power of prayer. He and his mom know their faith has carried them through the darkest moments of the last two years.

But Chris Benda also acknowledges the way she worships feels different than it did before the accident.

“My faith has changed,” she said. “It’s become stronger, but it’s different. I feel like I don’t need to go to church all the time to pray. I’ve seen the power of prayer happening outside the church. I saw what everyone could do outside the church and on our own.”

She found spirituality in so many places outside the walls of a church. She found solace in so many ways she’d never considered.

“Maybe I’m more accepting,” she said. “I’ve always been accepting of all faiths but somebody said the right prayer. Somebody did the right thing. We had all faiths praying for him. … Someone had that power or we did collectively.”

Chris said even her prayers are different.

“I’m more thankful,” she said, “not just asking for things.”

She and Pete want people to know that a brain injury isn’t like a broken arm. It doesn’t just heal and go back to the way it was. It is forever changed most of the time.

Pete believes he’s a “living miracle.”

The 15-year-old asks for patience.

“Just give them a little time,” he said of those suffering from traumatic brain injuries. “Be patient — very, very, very patient. It’s a long tedious time to overcoming the recovery.”

And his mother asks for understanding.

“The biggest thing is don’t judge a book by it’s cover,” Chris Benda said. “People look at Pete strangely when he can’t get his words out. … There is more to someone’s story than you know.”

Twitter: adonsports

EMAIL: adonaldson@deseretnews.com

Recommended
1. Arizonareader
, ,
July 20, 2014

I understand the agony of watching your child in a coma and watching them learn to eat again, walk again, and think again after the coma state lightens. I have been there. And, because it never goes away, I know how each day is a new adventure! Keep on loving the gift of life and trusting God. It isn't the same life you dream about after a TBI but it is glorious to see your child learn how to be a functional and productive adult. My daughter now works as an aide working with Austic children in the school setting and she loves it! She, too, looks as though no injury occurred but her fun thought process we have learned to enjoy the humor and love who we have without grieving for what might have been.

2. JapanCougar
Apo, AP,
July 20, 2014

Really beautiful article.

Keep trucking Pete!

3. timpClimber
Provo, UT,
July 20, 2014

An important story for everyone to read and contemplate, It shows the power of a mother's love, a community of caring and the value of faith in God. Will make a great book an d movie to inspire us to be more compassionate and understanding.

4. Southernmiss
kaysville, UT,
July 20, 2014

So happy for you that things are going so well! We have a very similar situation. Our son was hit by a car and suffered lots of internal injuries and a TBI as well. When he came out of the coma he didn't remember anything..no past, but he did remember us..parents and siblings. He was 11 then and just turned 18. He will graduate from Davis High School this coming December and is planning to attend college and study accounting..not bad for a kid they gave no hope to! He does have a completely different personality, and we noticed that as soon as he woke up. But we've decided we like the "new" son better! There are challenges, but they're all worth it! I'm sure you feel as I do, that my son was allowed to stay here for some very great purpose! I don't know exactly what it is, but I know I have greater faith in God because of seeing my son succeed in so many areas that the doctors said wouldn't be possible! My son is my hero.

5. FanOfTheSith
Vernal, UT,
July 20, 2014

I'm so happy that he is doing so well. You are an inspiration to all, Pete.