From the moment he was born, Everett was a mystery.

“We celebrate each day we have,” his mom Kristine says.

 Even though he was a full-term baby, doctors said his lungs looked like they hadn’t developed much past 24 weeks.

Every time doctors thought they knew what was wrong, Everett wouldn’t respond to typical treatment. His fragile lungs kept failing him. One night, when he was just a couple of weeks old, he had to be transferred to a new hospital for more critical treatment. They weren’t sure he would even survive the trip.

“We just sat in the hospital parking lot until we knew he was safe there, and he made it,” she remembers. “He’s such a trooper.”

Genetic testing didn’t reveal any abnormalities. Nothing showed up on ultrasounds. A lung transplant wasn’t an option because there were too many risk factors.

“They would tell us ‘we don’t know how much time he has so enjoy the time you have with him.’”

His family would sit in the waiting room, praying for a miracle – not knowing what to expect. The chaplain would come. They’d hold their breaths. And their little boy would somehow pull through.

“I’d just take this moment,” his mom says. “And tell myself he made it today.”

“They can’t tell me what’s wrong with him, so you really can’t tell me what he’s capable of, either,” his moms says. “Everything he does is something they say he wouldn’t do.”

When he was ten months old he was finally well enough to come to La Rabida.

 “We were researching where to send him and it was a no-brainer. La Rabida is amazing,” Kristine says. She says the family was looking for a place for Everett to improve close to home, which had a reputation for going above and beyond.

“Nurses helped us get through the toughest days,” his mom remembers. “Renee {Fife} did a lot of our classes and she’s amazing. She gave us so much confidence.”

The family did 12-hour shifts at the hospital, learning how to care for Everett with the goal of going home as soon as possible. Nurses say his family was extremely engaged and eager to learn.

“It takes a very special parent to be able to take a child on a ventilator home. It takes a lot of training, practice at the bedside and confidence in their own skills,” says pediatric nurse practitioner Renee Fife.

“You still have a lot of learning once you get home,” his mom says. “But we definitely felt prepared.”

While Everett had been home since February, meeting and exceeding milestones, all that preparation paid off when his mom had to spring into action recently during an emergency.

“Our little miracle had multiple strokes but is awake, signing with his right side and has his sense of humor back,” his mom says.

In December he came back to La Rabida for rehab, working to recover movement on his left side. He still loves music and doing the chicken dance, and he’s started doing sign language again with both hands. Despite all he’s been through, his family says he has an amazing sense of humor.

While the last month has been a whirlwind, his family says they are grateful to be back in a place that brings so much comfort and hope.

“With the help of La Rabida, he is making baby steps every day,” Kristine says.

This story was featured in the Winter 2022/2023 issue of Currents. Read the full issue here.