A decade later, Piersen requires care 24 hours a day.
Piersen is also growing and thriving – and has a changing set of needs as he nears his teenage years.
Like any 12-year-old boy, Piersen cracks up at certain bodily functions and sometimes rolls his eyes at his parents.
He likes fireworks, splash pads, bumper cars, and all kinds of music – though his absolute favorite is Queen’s “Bohemian Rhapsody.”
Piersen has a tracheostomy and g-tube. He communicates with facial expressions, huge grins, sounds, and with an eye-gaze device called Accent 1400 from his wheelchair.
The device helps him make choices like what he wants to wear to school that day and what songs he wants to listen to on the way there.
“It has a series of pictures and words and commands that it can give, and he can look at it, and he can voice back what he’s looking at on the screen,” said Stacey Hawkins, one of two nurses who help care for Piersen at his parents’ Monmouth homes.
Piersen’s days start with wearing a shaking vest to loosen secretions in his chest, followed by a breathing treatment.
He has a pump in his abdomen that helps with muscle rigidity and another in his collarbone that stops him from having seizures.
Hawkins said it's been a blessing to be part of Piersen’s life.
“Piersen is awesome. He displays personality and wants and needs every day. He makes choices and he gives facial expressions to say whether or not he cares for whatever is happening,” said Hawkins.
A pact to stay positive
Valentine’s Day 2014 is stamped in the memories of Piersen’s parents, Tim and Candis.
They dropped off Piersen and his younger brother, Lincoln — then a baby – at a licensed daycare home in Charleston, Ill.
“Before 2/14/14, Piersen was a walking, rambunctious, talkative, slight attitude, 23-month-old boy,” Tim said. “He enjoyed watching Disney movies and enjoyed music prior to that day as well.”
Just before noon that day, they got a call that Piersen wasn’t breathing.
He was rushed to a local hospital in Charleston and then to a trauma center 60 miles north in Champaign-Urbana.
Tim said on the way there, he and Candis were sure they would be back home with Piersen by the next day.
“It wasn’t until the next morning that the team basically said that Piersen has sustained a traumatic brain injury and we weren’t sure if he was going to come off of life support,” Tim said.
It was soon determined Piersen suffered from Shaken Baby Syndrome, when a child is shaken so violently that the brain bounces back and forth inside the skull.
According to the National Center on Shaken Baby Syndrome, there are around 1,300 reported cases in the United States a year. It is the leading cause of child abuse deaths.
One in four children who suffer Shaken Baby Syndrome do not survive. Of those who do survive, 80 percent – like Piersen – suffer lifelong disabilities.
It would be months after Feb. 14, 2014, before Piersen came home. Tim and Candis spent around 200 days with him in hospitals and rehab centers from St. Louis to Chicago.
“Getting to come home, Piersen was definitely a very different little boy. He needs help with everything he wants to do,” Tim said. “But he was breathing on his own.”
Candis said they made a pact to stay positive.
“It’s not good to be negative about the situation. You have to make of it what it is. We’re pretty positive,” Candis said. “And Piersen is thriving, compared to what it could be. Because we could have lost him.”
Tim and Candis and the boys moved to western Illinois to be closer to family. The couple later divorced, but live just a few minutes away from each other in Monmouth.
They share parenting responsibilities. They keep the pact to stay positive. And they have an open-door policy, if either wants to see the kids at each other’s houses at any time.
Both parents marvel at the relationship their sons have.
“Lincoln’s never known Piersen any different than how he is now. They’ve grown together like this,” Candis said. “Lincoln is just the sweetest with him, plays with him, talks with him, gets him to laugh, and it’s just a really special bond that they have.”
Though they stay positive, there have been dark days.
The woman charged with shaking Piersen and causing his injuries was found not guilty.
Experts testified Piersen injuries could not have been caused by a fall, like the woman claimed. But a jury found reasonable doubt, so there was no justice for what happened to Piersen that day.
Through a decade of procedures, surgeries, and hospital stays, they didn’t always know if Piersen was going to make it home. There’s been stress, anxiety, uncertainty – wondering what’s next for Piersen.
But he has always made it back home.
“The last major surgery was spinal fusion, which was two rods and twenty-seven screws to keep him straight and upright,” Tim said. “That procedure was done two years ago and since then, he’s been making the family room his bedroom.”
A new space
Piersen has no major procedures or surgeries on the horizon.
And like other 12-year-old boys, he’s growing.
Piersen is now around five feet tall and weighs around 100 pounds. But he is expected to reach more than six feet tall and up to 160 pounds.
“He’s just getting taller and heavier. We just got fitted for a new wheelchair that’s going to be at least two inches bigger on each side,” Candis said.
As Piersen grows, it’s getting harder for his parents and his nurses to safely lift and move him.
At his dad’s house, Piersen’s wheelchair is too big to make the sharp right turns in the narrow hallway to his bedroom and bathroom. That’s why he’s been in the family room the last couple of years.
Tim said it’s time to build Piersen the space he needs – so he can continue to grow and thrive.
“We’re currently working with a builder out of Peoria to add on a bedroom, bathroom, closet space, just off the current living room,” said Tim.
Piersen’s new space has been a dream in the making for years. It will have storage for Piersen’s things, a sleeping area, a therapy area, and a bathroom with a tub that he can be lowered into for a long soak.
It will also have a ceiling-track lift system to transfer him safely – and a door that closes so Piersen the teenager can play his music as loud as he wants.
The addition to Tim’s home is estimated to cost around $200,000. Some of that has already been raised and the builder is helping with materials.
“He’s gone through a lot. So we just want to be able to make him as comfortable as possible as we continue on this journey,” Tim said.
Tim said his family has been reluctant to ask for help, but he’s realizing that people want to help Piersen.
They have a goal to raise $100,000 for Piersen's new space.
For more on Piersen’s journey, visit PiersenStrong.org or Piersen Strong on Facebook.
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