By Dylan Manfre
Rylee Diffenderfer is a Division I athlete on Rider’s field hockey team, an elementary education major and a freshman adjusting to college life. But her larger purpose, she said, is her 16-year-old brother Jackson Diffenderfer, who was born with a plethora of medical anomalies.
Rylee Diffenderfer, 19, said playing field hockey is an escape from her constant worries about her brother’s future. Writing is another escape, and she regularly blogs about Jackson and his health struggles.
“The same way that I’m transitioning into adulthood, [I want to] help him transition into adulthood as gracefully as possible,” Rylee Diffenderfer said. “He’s going to have to find things that he wants to do, like, career-wise, and, you know, with his relationships and things like that. … And in that way I feel I’m fulfilling my purpose.”
Her brother has inspired her goal of becoming a special education teacher and working with kids like her brother at a program similar to Jackson’s Life Skills program at Warwick High School.
While she is 90 minutes away from her home in Lititz, Pennsylvania, at Rider she misses her brother and Jackson misses her too. He said he missed the trips to the bookstore and snuggling. He called her the “sunshine on my shoulder.”
“I love her,” he said.
Getting to know Jackson
Jackson’s family describes him as “differently-abled.”
He does not have autism or cerebral palsy, though his family said he has tendencies of each and people may assume that he has those conditions if they do not know him. In fact, Josh Diffenderfer, Jackson’s father, agreed it would be a disservice to refer to his son as having special needs.
“When you let those words [differently-abled] sink in and realize what they actually mean, that’s what it is,” Josh Diffenderfer said passionately. “There’s no standard for what a human being should be. They’re the best we have to offer in society. They don’t judge each other, they don’t manipulate to gain an advantage over one another. They’re simply loving and seeking joy and happiness.”
Rylee Diffenderfer continues to play field hockey because of her brother. Their mother, Christina Diffenderfer, asked her first-born son what he likes most about seeing his sister play.
“Cheering!” he exclaimed.
Jackson is usually the loudest at every game — he loved chanting “Go Warwick,” when his sister played in high school and is eager to see a game at Rider someday. Rylee Diffenderfer said that hearing him cheer always pushes her on the field because she knows her brother will never play competitive sports as she does.
“Something everybody has to go through when they’re playing sports is those mental blocks,” Rylee Diffenderfer said. “Anytime I hear him cheering, it’s not a question anymore, like, I’m going to give it my all. Hearing him cheer reminds me that I’m able to do things that he’s never going to be able to do.”
“It was hell”
Jackson was born 6 pounds, 11 ounces and a week premature. But then doctors found one issue after another.
Jackson has hydrocephalus, which his mother said amounts to “fluid in the brain.” He also has a Chari malformation, which is a result of his cerebellum – the part of the brain responsible for voluntary movements and motor skills – forming backward and doctors are not sure why.
The Diffenderfer’s oldest son had horseshoe kidneys, a condition when the kidneys are turned together and form a U-shape. His heart was enlarged and had holes in it. His medical anomalies meant Jackson’s prognosis looked bleak.
He has endured 20 surgeries in 15 years, some of which were invasive on the brain.
Josh Diffenderfer described his son’s first year of life as a “hell at the time. It was a very chaotic time and traumatic … it [was] hard to see the light at the end of the tunnel.”
Doctors gave mixed messages about their son’s heart conditions called cardiomyopathy and atrial septal defect. Some said he would survive with his enlarged heart and others said he would not.
“When he was a baby, [doctors] would tell us all the things that were wrong,” Christina Diffenderfer said emotionally. “But he was there. He made eye contact, he would smile. I think we all believed that there was more for him.”
A sibling bond
Even though Jackson is differently-abled, Rylee Diffenderfer and her brother bond over many things. When she would drive him to Barnes & Noble so he could look at Scooby-Doo books, they would always listen to music.
“Happy” by Pharrell Williams is Jackson’s favorite song and he loves to sing and dance. Rylee Diffenderfer made him a three-hour playlist on her iPhone.
“I’ll just hit shuffle and he knows every word to every song,” Rylee Diffenderfer said. “It’s just another way for me to sort of show him what he is capable of doing.”
Her brother’s favorite song includes the lyrics “Can’t nothing bring me down.” However, in quiet moments, Rylee Diffenderfer worries about him.
“Probably every day, a ‘what if’ question crosses my mind,” Rylee Diffenderfer said. “What if somebody picks on him? What if somebody misunderstands him?
“Sometimes, it’s the last thing I think about when my head hits the pillow at night,” she admitted.
Her escape from those worries, in addition to field hockey, is writing.
She brings her thoughts from her head, down her left arm and through her hand, from the ink in the pen and onto her white notepad. Some of those stories made it onto her blog titled “Through Jackson’s Eyes.”
“I would try to depict how I consciously make an effort to see the world through his eyes as much as I can rather than my own,” Rylee Diffenderfer explained. “I genuinely believe that seeing the world through his eyes is better than seeing the world through my own eyes and I hope that other people would feel the same way after reading the ways that he has inspired me to look at things differently.”
Her eloquent posts touch on many topics throughout her brother’s extraordinary life. She wrote about her brother’s intense brain surgeries. A child herself at the time, she recalled seeing his fragile body pop up from a hospital crib with stitches lining his head.
“As soon as I saw Jackson, I didn’t even see the stitches on his head,” she wrote in a post. “All I saw was him sitting upright in his crib in the hospital room watching TV like a champ, just as if he was sitting in his own home. And I knew he would be okay. My little brother sat there with a quiet strength exuding from him.”
Christina Diffenderfer was profoundly moved by her daughter’s ability to articulate her vulnerability and feelings in the blog.
“As a mother, I have all these feelings inside,” she said with pride. “There is so much you want to say to people and so much you want them to know … I’m always blown away by it because I think ‘Wow if I could write,’ … I’m just amazed by her.”
Rylee Diffenderfer explained, “I think that even by just writing my blog, which maybe five people read, every time I write a post, that’s better than nothing.”
“In that way, I feel like I’m fulfilling my purpose,” she said. “I feel like my purpose is to make the world a better place for him and his friends.”