In 1984, Thanksgiving wasn’t even a thought at the home of Steve and Dyan Simon of Key Biscayne. The couple and their extended family were in a state of vigil, hoping tiny, precious PJ would survive.
Five days earlier, the Simons’ first child had entered the world eight weeks prematurely, weighing just 3 pounds, 4 ounces.
From his first breath, it had been touch and go. Then came the frightening big blow, delivered by a newly practicing radiologist working the holiday shift at Miami Children’s Hospital. Images showed that PJ was not only bleeding in his ventricles, where spinal fluid is made, but also was bleeding into his brain tissue, which leads to lasting brain damage.
“It is the worst type, Grade 4,” said Dr. Nolan Altman, now the hospital’s chief of radiology, who met Steve Simon while both were doing their residencies.
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“That is what I had to tell my friend that Thanksgiving evening.”
Steve went home and told his wife, who was recovering from the emergency C-section. “I remember just screaming, putting my head into my pillow and screaming,” Dyan said.
As a result of the “pediatric stroke,” which is common in premature babies, a neurologist told them PJ had lost half his brain and would never walk, talk or know them as his parents.
Tears welled in Steve’s eyes as he added: “The neurologist also advised us to seriously consider not bringing PJ home and put him in an institution.”
It was a time when much less was known about premature children. The Simons started to visit one institution, but they never made it through the doors. PJ, the nickname Steve gave to his son when he was just 12 hours old, stood for Pride and Joy. No way was their son not coming home.
That decision was boosted by a nurse named Doris. “I can still hear her telling me in her accent, ‘Honey, I can tell by the look in this child’s eyes he’s going to be just fine,’” Dyan said.
Several surgeries and endless hours of therapies later, along with a whole lot of love and support from his family and their son’s own inner determination and strength, Joshua “PJ” Simon is doing just fine.
PJ has a full life that none of his doctors could have imagined. On Nov. 17, he celebrated his 30th birthday at one of his favorite places: the Village of Key Biscayne Community Center, where he has worked for the past five years, six days a week, as a gym attendant.
“He’s kind of a pain,” member Jill Stephens said jokingly. “I’ll be using something, like this rope that is popular for working triceps, and I’ll put it down to do a triple set and before I can use the rope again, PJ has already put it back where it belongs.”
Altman, who still keeps in contact with PJ, said it has been a “privilege to watch him grow up. I saw the brain image of him.”
It has been a long journey, but PJ not only learned to walk, he also has run two marathons and eight half-marathons. This year he was named one of 25 Medtronic Global Heroes as a runner who has inspired others. To qualify, a person’s life has to have been improved by medical technology.
During his first days of life, PJ also developed hydrocephalus (water on the brain). To treat it, surgeons inserted a shunt that diverts fluid from the brain into the abdominal cavity, where it is safely absorbed into the bloodstream. PJ was just 21 days old, and since then has never known life without a shunt.
PJ also learned to talk. “I sometimes joke with him, ‘PJ, did you eat a parrot today for breakfast because you are talking too much?’” said gym member and family friend Frank Andrews.
PJ has a vocabulary that would be the envy of many. He is an avid reader, having recently polished off Gone Girl, The Virgin Suicides and Collateral Damage. He’s about to delve into The Poisonwood Bible.
He is an avid sports fan who can recite statistics about his favorite teams. Steve Simon thinks it stems from PJ’s first full day at home, on Super Bowl Sunday 1985, when he and PJ watched Dan Marino’s Miami Dolphins meet Joe Montana’s San Francisco 49ers.
He earned his high school diploma and a bachelor’s degree in sports management at Mitchell College in New London, Conn., one of two colleges the Simons found that could accommodate his special needs.
In addition to his job at the gym, he has a side business walking dogs, including his Aunt Gail’s “Nucky.” “He gives me the family discount,” Gail Fried said.
Simon is outgoing with members of the gym, showing some how to use the machines. Others tease him about being so perfect at keeping things in order. A few talk to him about running.
He’s thoughtful, bringing a Gators fan the upcoming UF basketball schedule and making another member pumpkin bread for her birthday. When Andrews is out of town on business, PJ texts Andrews’ wife, Megan, a special-education teacher who worked with him as a child on reading and math readiness, to ask whether she needs anything.
“PJ is like a little light bulb,” Megan Andrews said. “We love the way you are.”
His brain was not as severely damaged as the neurologist originally thought. The Simons also began physical therapy for him when he was just 4 weeks old, followed by years of occupational and speech therapy. They had three more children, Arielle, Brett and Jared, and always tried to treat PJ the same, encouraging him to do everything his siblings did: playing baseball, swimming, attending summer camp.
Maria M. Rodriguez, director of pediatric pathology at Jackson Memorial Hospital and a colleague of Steve Simon, said in an email that PJ is a survivor because he was strong and had an extremely supportive family. “Not all pre-term children have that combination,” she said.
After making the decision not to institutionalize PJ, the Simons also had to go before a review board before the shunt surgery could be performed.
The review board was newly formed as a result of the Baby Doe Amendment, which was part of the Child Abuse Law passed by Congress in 1984 that set guidelines for treating seriously ill and/or disabled newborns, regardless of the parents’ wishes.
“They were treating us as if we didn’t want to do what was right for our child,” Dyan Simon said. “It was horrendous to go through, but the outcome was fine.”
While the Simons had good insurance at first, there were many fights to get PJ therapy and other needed medical help along the way.
PJ now is independent in parts of his life and dependent in others. He cannot drive because of impaired vision that was a result of his premature medical problems. He gets around by his bike, but will call his grandmother for a ride if it rains.
While he was young, he had a few friends, but now he has no social life.
“I’m his social life,” said his mother, a part-time dental hygienist. “We go to the movies. It’s not like PJ has people who call him up and say, ‘Hey, let’s go out for a beer.’ That’s the hard part.”
Dad Steve, an assistant professor of pathology at the University of Miami’s Miller School of Medicine, added: “We’re telling you a story about something that is miraculous. But it’s incorrect to say it’s perfect. That would be misleading for other parents who are faced with it.”
PJ smiled when he was presented the cake as staff and members clapped and sang “Happy Birthday” to him. Then he took his piece of cake, sat at a table by himself facing the wall, and ate it before returning to the gym.
PJ loves the order in his life. His daily routine includes 15 minutes of meditation, working out at the gym and running. There is no multitasking. He does one thing until it’s done correctly, and then moves on to the next.
That’s why his stretch therapist Adam Kilmer thought that the structure and regimentation of running would suit him, despite his right leg being slightly smaller than his left as a result of the pediatric stroke.
“At first PJ was skeptical about running,” Kilmer said. “He had to convince his brain he was capable of it.”
PJ began running during his senior year in high school. He loved it so much that he helped start a cross country team at Mitchell College. He built up to the National Marathon in Washington, completing the 26.2-mile race. He knows his exact time: 5 hours, 20 minutes, 48 seconds for a 12:15-per-mile average.
“For that one I ended up running out of gas,” PJ said. “I was dehydrated and didn’t prepare well enough the last week of the race.”
As a Medtronic Global Hero, he got a free entry into the October Medtronic Twin Cities Marathon in Minnesota. This time, PJ finished in 4:46:34 for a 10:57 average. “This one was better because I actually was not feeling like I was dead at the end,” he said.
Arielle Simon, PJ’s sister, said she and her other two brothers loved to “annoy” PJ when they were kids, knowing their brother didn’t like any disruption to his routines.
She says when she now thinks about what PJ has gone through, which includes eye patches and casts on his legs and the therapy and special schools, she is so proud of him.
“He finished college in less time than I did,” she said. “He’s honestly faced all his challenges with more grace and less complaining than the rest of us. In all aspects, he really is amazing.”