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Dad gets skull tattoo to share son’s pain

November 23, 2018

BELLEVUE, Neb. (AP) — 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.”

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.”

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 7 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 told the Omaha World-Herald . “It’s like a hug.”

Perhaps the most difficult year of 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.

Mica Stewart, owner of Electric Ink Society near the Nolan family’s house in Bellevue, offered this past summer 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 Scout 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 hair, and he knows he’s not alone.


Information from: Omaha World-Herald, http://www.omaha.com

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