As he climbed onto an examination table, preparing to have his head sliced open ear-to-ear for the 10th time, the realization of the journey ahead washed over 12-year-old James Nolan.
He gripped his yellow toy duck, tugged on his ear and began to cry.
Every few years, surgeons cut open the same blurry scar, remove parts of his malformed skull, reshape them on the operating table and reorganize them to make room for the growing brain his body refuses to accommodate. The recovery is painful, and it takes three days just for his eyes to reopen.
As James wept on that examination table in spring 2017, his father bent down, looked in his son's flooded blue eyes and tried to reassure him.
“I would take your pain if I could, but I can’t," Joe Nolan said. "The world doesn’t work like that.”
He couldn't end his son’s pain, but what if he could share it?
Just then Joe got an idea — one that could not only calm his son in that moment, but would stitch an already close family even tighter.
He'd get a tattoo. It would arch across his head, ear to ear, just like his son's scar, a flesh-colored mark crisscrossed by 10 blue ink staples, each representing a time his son went under the knife.
“It’s not as bad as surgery,” Joe told his son that day, “but it’s like getting a shot 1,000 times.”
James stopped pulling his ear and his posture relaxed.
Later, at home, Joe dug out a tattoo tip he manufactured as a machinist before James was born. He traced patterns on his son’s arm, explaining what a tattoo was, how much it hurt and what his dad's ink would look like.
Whenever James got nervous about surgery after that, Joe asked his son again, “OK, where’s my tattoo going?”
Every time, James lifted the tip to his dad’s head.
* * *
James was born with a catalog of ailments, some which were apparent from the womb.
He has water on the brain (hydrocephalus), an outgrowth of brain tissue (encephalocele), a nose displaced between his eyes (frontonasal-dysplasia) and a skull that, put simply, just didn’t grow right (craniosynostosis).
He has a pair of fused toes (syndactyly), a feeding port (gastrostomy button) and a breathing hole in his neck (tracheostomy). Because of his unique facial anatomy, he tends to choke or gag on almost anything he tries to swallow, so all his food must be pureed.
James learned how to walk without aid at seven years old. He’s a vocal kid, but he’s nonverbal. He says a whole lot, but only a few difficult-to-understand words come out.
He communicates in his own way.
“When he likes you a lot, when he trusts you a lot, he takes your hand to his chest," Joe said. "It’s like a hug.”
Joe and Katie Nolan don't know what caused their son's abnormalities, but each has a hypothesis.
Katie was vaccinated against anthrax while serving for the U.S. Army National Guard in Kuwait in 2002, before they had James. Joe had been exposed to radar transmissions while repairing aircraft for the Air Force.
"There's almost really no way to know for sure," Joe said.
They knew early in their pregnancy that James would be different. They enrolled him in Bellevue's Early Childhood Education program while Katie was pregnant and a representative from the program visited James in the hospital days after he was born.
The Nolans refused to let their son’s challenges restrict his life. James goes on Boy Scout camping trips, participates in All Play baseball, rock climbs, races soapbox cars and just this summer rode in a Sherman tank with his dad and his sister, Anna.
James has been to Disneyland, the Grand Canyon and high school homecoming.
“I didn’t want to get to the point where there’s anything on his bucket list,” Joe said.
That said, doing those things is demanding for James and his family.
They’re notorious for running 30 minutes late to most events. Even with James’ sister Anna helping out — "she's the awesome-est little sister" her dad says — it’s a big effort to get James going.
At restaurants, the family brings a battery-operated blender so James can pick out his own food and get it down safely. They try not to impose themselves on others to accommodate their son. They find a work-around.
Enabling James to have a semi-normal life is all about decision making. There isn’t enough time in the day or the year to do everything. So they’ve embraced a strategy they call the “least-worst option.”
Take potty-training. Teaching James to use the bathroom would take an hour or more a day of dedicated, focused energy over several years. That time would have to come from somewhere, and the family already has a packed daily schedule.
If they don't potty-train him, the biggest downside is a lifetime of changing diapers. But the biggest downside of the potty-training is what he could miss elsewhere: therapy, exploration or social time — the highlight of his day.
James would have to give up far too much, his parents decided years ago. So for now, they’ve decided to skip potty training.
Perhaps the most difficult year raising James came in 2011 when Katie served for the Army National Guard in Afghanistan, her second tour in the Middle East. Joe managed the family at home.
During that year, James learned to walk.
"It was the most amazing homecoming and the most bittersweet at the same time," Joe said. "She comes home and he walks into her arms independently."
Katie was eligible for retirement from the Guard shortly thereafter, and she took it. "I can't miss any more of this," she said.
No clock is ticking on James' life, but his parents know that his unstable motor skills and tendency to choke on food pose a constant threat.
Raising James takes patience, sacrifice and a positive attitude. It takes a spectacularly unselfish little sister and two of the best parents a kid could ask for.
But to the Nolans, it's what any parent would do.
“We get a lot of our energy seeing other parents doing this,” Katie said.
They get advice from other families, and family members who have children with disabilities showed them how to thrive amid their challenges.
“If they can do it, why can’t we?”
* * *
It took more than a year for Joe to find a tattoo artist to do the job. Some refused to tattoo on his head, most were too pricey and he had a falling out with one, restarting the process and delaying the project so long that Joe didn't get it done in time for James' surgery.
But by Father's Day this summer, it all finally fell into place.
Mica Stewart, owner of Electric Ink Society near the Nolan family’s house in Bellevue, offered to do the work for free.
“James is a part of my community. He’s one of our children,” Stewart said. “I think it’s important if we’re able to be able to step up and represent a family that struggles like that, then if I can do my part, I’m going to do that.”
Joe shaved his head every few days for weeks ahead of the tattoo to create a bump-free canvas.
His tattoo took 2½ hours to create. Joe focused on the needle carving into his scalp and thought of his son on the operating table.
"It was hugely satisfying,” he said. “I savored every poke.”
About 30 minutes late — right on time — James arrived wearing a blue Rocket Raccoon shirt. His father took out the pretend tattoo tip he used the year before to demonstrate the process to James, and he flinched.
“No, this isn’t your turn for pain. It’s my turn,” Joe said.
James meandered about the orange-walled tattoo parlor, playing with toys but always returning to check on his father.
At one point, James extended his arm.
Normally, he'd take his father's hand and pull it toward his own heart.
This time, James put his hand on his father’s heart.
“That was pretty powerful,” he said. “That ‘I like you, I trust you,’ he gave that to me.”
Joe Nolan’s new scar hurt for three days, the same amount of time it takes James to reopen his eyes after surgery.
Five months have passed since Joe got the tattoo. James has camped with Boy Scouts buddies, climbed a rock wall with Dad and started high school.
Since then, Joe's hair has grown back. But any time James wants another look at his dad's twin scar, all he has to do is part his dad's ashy brown hair, and he knows he's not alone.
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