On Friday, Michael and Sophia Lyles celebrated as their baby boy managed to stand upright. Next week, they hope to start preparing him for kindergarten.

Neither is merely symbolic of the fact that that time is fleeting. Hours seldom seem to pass quickly in the pediatric intensive care unit where 5-year-old EJ has been since Aug. 20, three days before he was to have started school.

The Lyles family had different plans for their first-born’s first days of classes. He would be attending H.B. Sugg/Sam D. Bundy in Farmville, where his mother went to school two decades earlier, a few blocks away from where his grandfather teaches at the high school.

Instead, EJ remains 97 miles away at Duke University Medical Center, where he is being treated for MRSA (Methicillin-resistant Staphylococcus aureus) infection and multisystem inflammatory syndrome in children. Since August, he has undergone half a dozen surgeries and spent 58 days in a hospital where his parents were told he might not live for a week.

“It’s definitely been trying in our faith,” Sophia said. “My husband says all the time, ‘Before this, I believed in God, but now I know there’s a God because there’s no other explanation.’ Even the doctors are like, ‘I don’t know what to say anymore.’”

Long journey

Seventy-five days ago, EJ, short for Elliott Jay (both family names on his mother’s side), was a healthy child who spent his days playing soccer and T-ball. He liked building, digging in the dirt and all things super heroes. When the family left home in Bell Arthur on Aug. 3 to spend a few days in Georgia, EJ’s Spider Man toy went along for the ride.

Michael’s employer, ABC Supply, was sending him to Atlanta for training. Because the family has friends in that area, Sophia, EJ and his baby sister, Josie, went along for a mini-vacation.

Family members were about 10 minutes from arriving at their hotel when Michael developed a nosebleed. As he pulled over to try to get it under control, Sophia exited the passenger side and started walking around the back of the SUV to take his place in the driver’s seat. But before she could get there, an oncoming car hit back of the Chevrolet Traverse. The impact sent Sophia into the air and caused her to land, face down, some 15 feet away.

“They hit so hard that I was actually flung into another lane of traffic,” she said. “Had I been probably another inch behind our car, I would have died instantly.”

Michael sustained minor injuries from where the car’s airbag deployed, but the children, strapped in their car seats in back, seemed unharmed.

“Nobody checked out the kids,” Sophia said. “I think everybody was like so hyper-focused on me.”

She was transported to the trauma center at Grady Hospital, where doctors discovered she had a broken sternum, nine broken ribs, a broken wrist and COVID-19. The positive coronavirus result came as a surprise to Sophia, who had tested negative for the virus shortly before the trip.

The following day, Michael brought EJ to the hospital with fever and nausea symptoms. Doctors diagnosed the child with COVID but did not admit him.

Michael and Sophia’s parents took care of the children at a nearby hotel to be close to Sophia, who was hospitalized for 11 days. Five days after the wreck, Michael returned to the hospital with EJ, who had grown sicker.

“He wouldn’t walk on his leg, and his leg got really swollen,” Sophia said. “They did an X-ray and said it was a small sprain and that his pain was likely a result of muscle aches from COVID and told them to go home.”

But when the family finally was able to return to Greenville on Aug. 14, EJ still wasn’t putting weight on his leg. Michael got his wife and daughter settled at home and drove his son to Vidant Medical Center, where doctors located a fracture in his leg and began treating EJ for osteomyelitis, a bone infection. He also was experiencing MIS-C, a complication that may occur weeks after a COVID infection and can lead to organ failure. Over the next few days, the child’s condition would worsen until doctors made the decision to have him airlifted to Durham.

“It was almost like a huge roller coaster,” Sophia said. “We still feel like we hadn’t gotten off of it.”

No good news

Hoping EJ could have surgery to repair damage to his heart, his parents were told that their son, who had been placed on a heart-lung machine, was far too weak for such an operation. In addition, his kidneys and liver had been affected. Further tests revealed a brain bleed and a bowel perforation.

Hospital workers took steps to make handprints for EJ’s parents to keep and invited grandparents to visit for what was expected to be the last time. Palliative care and a do not resuscitate order were recommended.

“They did everything they do when you’re preparing for your child to die,” Sophia recalled. “I hated these family meetings because every time, they were never good.

“How do you deal with being told your son needs to go on palliative care? How do you deal with that?” she said. “We refused that. We said, ‘No, we’re not giving up. He’s breathing. We’re not giving up.’ So we started asking for prayers for certain things.”

Shortly after EJ had been admitted at Duke, Sophia had started EJStrong, a blog on Facebook. It was designed to keep her from being overwhelmed with having to return phone calls and text messages from family and friends or fellow members of Covenant Church or Bell Arthur Fire Department, where Michael had volunteered since he was a teenager.

As good wishes for EJ began to pour in, the grandmother of one of the boy’s preschool friends suggested a synchronized prayer time. So Sophia asked thousands of EJStrong followers to offer daily prayers on his behalf at 8:30 p.m.

“More prayers heard together are louder,” she said. “Usually by 8:30 everybody’s getting ready for bed, so they say (prayers) with their kids.”

While Michael and Sophia longed to hear EJ’s voice, their son remained intubated for weeks, immobilized by a paralytic medication that kept him from fighting against the ventilator. For the first month of his hospitalization, EJ appeared largely unresponsive.

“We always knew he was there,” Sophia said. “Every now and then he would squeeze my hands.

“But 100 (percent) of it was faith at that point because we were looking at our child, who was lifeless. He was yellow. He wasn’t moving but every now and then,” she said. “We begged (God), ‘Please let us keep raising him. Don’t let this be it.’ At that point there was nothing left. They had done everything they could.”

Community support

As news of EJ’s condition spread, friends at home began to rally. One organized a Go Fund Me account, which has so far raised more than $11,000 toward its $15,000 goal. The Bell Arthur Fire Department sold raffle tickets for a gun as a fundraiser for the family. Others launched the sale of EJStrong T-shirts. Sugg-Bundy school painted a spirit rock out front with the same Superman-style logo.

Principal Allison Setser said plans call for the rock, donated to the school to “rent” as a fundraiser, to keep one side with its current theme until EJ is well enough to attend kindergarten.

“We love him already,” she said, “and he hasn’t even walked through the doors yet.”

An anonymous donor has agreed to buy all 750 students one of the EJStrong shirts, which have already begun to show up on campus. The school is selecting an EJStrong day for students to wear their T-shirts in a show of support.

“We had every class go out to the EJ rock, and they all took pictures,” Setser said. “We’re a community school, and our community rallies and supports one another.

“It’s kind of like the Mr. Rogers thing where he talks about how when tragedy happens, you look for the good. You look for the helpers,” she said. “These are little things we can do to help that family through this terrible time. There’s nothing you can do that’s big to help them, but those little supports, I think, are what they needed right now.”

Students have been making cards of encouragement for their yet-to-arrive classmate. His grandfather, Cliff Coffey, stops by on his way home from Farmville Central High School to pick up notes and drawings to take to Durham for EJ.

Holding onto hope

The Lyles family has cherished those hand-made cards, taping messages of hope to the walls of EJ’s room. They have also taken comfort in images decorating the hospital halls that show older photos of children who once were patients in ICU, along with updated pictures of them once they were well.

“That just kind of gave you hope,” Sophia said. “We said, ‘One of these days, that’s going to be EJ.’”

Surgeons surprised Michael and Sophia in mid-September with a proposal for an exploratory surgery to assess damage to EJ’s perforated bowels. At first, the couple hesitated, wondering if the time was right to take a risk. Listening to a sermon on the healing of Naaman, an Old Testament military commander who was cured of leprosy after agreeing to submerge himself in the Jordan River, changed their minds. They decided that they would not refuse any offer to help their child.

Soon after, one physician, who had told the Lyles family that if EJ were her child, she would turn off life support and hold him during his last moments, returned one day with a different message.

“She said, ‘I don’t know what to say, but tell everybody to keep doing what they’re doing,’” Sophia recalled. “She told me, ‘I’ve never seen a kid this sick make it.’ They keep calling him their little miracle kid now.

“The doctors aren’t God,” she said. “They can tell you all day long what they think is going to happen. But until it happens, don’t give up.”

EJ remains on dialysis waiting for his kidneys to return to full functioning. He will require another heart operation and a procedure to reverse the ostomy surgery once he is well enough. Now that he is able to sit up for longer periods of time, he may start school at the hospital as early as next week. A week ago, EJ’s parents got to hear his voice for the first time in months.

“He said, ‘Mommy, God talked to me. He told me to be brave,’” Sophia recalled, adding that her son told her her saw the family’s former pet, a dog that died when EJ was 2.

“He doesn’t understand we’ve been here a really long time,” she said.

He also doesn’t understand the thousands of messages his parents have received from strangers as far away as Hawaii, Canada and Great Britain. When EJ feels stronger, the family plans to help him chart his responses on a map, placing a pin in every state where someone has reached out to him.

“The amount of support that we’ve received and how far his story has really stretched is what, to us, is just like, ‘Wow!’” Sophia said. “People needed something good. I think that’s why like people have stayed so closely connected to us.

“A lot of people have reached out and said, ‘I needed this for my faith. I was starting to question my faith,’” she said. “We were like, ‘Yeah, we did too, a little bit, but you had to hold onto something.’”

One blog follower, the mother of one of Sophia’s former classmates, sent her something symbolic of her faith, a ring with a mustard seed inside. Sophia, who still has a cast on her wrist from the accident in August, placed the ring on her right hand and hasn’t taken it off. A few days ago, EJ noticed it for the first time.

“I told him that even when things are scary, as long as we have this much faith, it’s going to be OK,” she said. “Even with faith this small, amazing things can happen.”

Contact Kim Grizzard at kgrizzard@reflector.com or call 252-329-9578.