His smile is bright. It’s flashy. Friendly. It’s what “King James” is known for.
That, and his vibrant personality. At 19, he’s a typical teenager. Sassy, sociable, with a “devious little sarcastic sense of humor,” his mom Beth Bostic says with a laugh.
He likes Star Wars, the Minions, getting ice cream, and gardening. He loves the beach, and he wants to go zip-lining someday.
“I’ve always told James that no matter what his challenges, he still had worth. He was still the king,” Beth said.
James is quadriplegic and non-verbal. He was born with severe jaundice and suffers from kernicterus. This occurs when the chemical bilirubin builds up in the body and affects the brain.
He requires lifting, dressing, and personal care 24-7. Most of Beth’s world revolves around her son. “He’s the first thing I think of when I wake up. The last thing I think of before I go to bed,” she says.
One day Beth got a call from a woman named Jamie. She introduced herself as a pediatric nurse care manager from Tufts Health Plan, and said her job is to provide support for children and their families.
“Oh thank God, someone who understands!” That was Beth’s reaction, according to Jamie. She could finally talk to someone about what was going on.
“I was flabbergasted that I would get a phone call from my insurance company, but it was extremely helpful,” Beth said.
“When you have a child who’s sick, nobody understands what it’s like to live like that,” Jamie says. They would talk on the phone every week.
Rolling in the Deep
After a routine surgery in 2016, James fell into crisis. At one point he had a spasm that lasted 12 hours. Think of it as a charley horse, Beth says, but for his entire body.
Deep brain stimulation surgery, or DBS, is shown to stop involuntary spasms in the body. It’s often used as a treatment for Parkinson’s, epilepsy, and other conditions.
Beth says that this surgery was something neurosurgeons at her hospital in Boston were not willing to do. After nearly 15 months in the hospital, James was still suffering from uncontrollable spasms. DBS surgery offered him a chance.
Gillette Children’s Hospital in Minnesota—one of the first hospitals in the country to offer pediatric DBS —agreed to do the surgery, but it wouldn’t be so straightforward. There were a lot of approvals to go through, between coordinating with medical transfers, doctors, schools, and other authorizations.
Jamie was able to help with all of this. “There were bumps along the way,” she says.
“This by far was the biggest challenge I had ever encountered,” Beth said. “You know, whether or not James was going to live was quite literally on the line.”
The surgery was approved, but the work didn’t stop there. “We were going to St. Paul in the dead of winter, so we had to prepare for that,” Beth said. Med flights, coordinating with schools, personal assistants, paperwork, doctors. Jamie was working in the background, helping Beth plan.
Finally, the surgery day arrived and James went under anesthesia. Almost 9 hours later, he was out, and his life would change forever.
Finding His Voice
“May the Force be with you.” It’s one of the first things James says to a crowded room of strangers who came to his home for this interview. Thanks to DBS surgery, he was able to speak through an eye gaze device.
Imagine a tablet on a stand. Any upward or downward gaze causes a red circle to form over a box on-screen that contains a category or a word. James uses his eyes to focus on one box at a time, and from there, he builds a sentence. For Beth and the whole family, it gave James a voice.
Before, if James needed something, Beth would go down a checklist—a process that could take 5 minutes, 15 minutes, or more. Now, he has the ability to say what he needs, how he feels, or when he wants to buy flowers from the hardware store. (They now sit blooming on the balcony.)
Other times, it’s to say, “Mom, Mom, Mom!” when Beth is on the phone, and then just smile when she finally asks, “What?!”
Persistence Pays Off
“I one-hundred-percent guarantee that James has thrived because of the strength of his mother,” Jamie says. Her persistence was unmatched, she said. For Beth, Jamie’s knowledge in navigating the system, knowing who to speak to and what to say, was a lifeline for the family.
“You know, when you’re navigating all of these multiple things, knowing that somebody else is managing, that is extremely helpful. ’Cause then I could focus on what I needed to do, which was being a mom.”
In one of the first conversations with his eye gaze device, James was talking on the phone with his sister, Maritza. He’d been giving his mom the silent treatment earlier, disappointed that she had visited his sister in Portland without him. So he talked to his sister for a bit, and afterward James said, “I love you.”
At first, Beth thought he meant it for Maritza. But James looked at his device and said, “Mom, Mom, Mom.”
“I had waited almost 19 years to hear my son tell me he loved me,” Beth said. “That made everything we had been through absolutely worth it.”