HARTFORD, Conn. — Twice a day, Koen Hughes’s medicine alarm beeps and sputters. He yells out across the kitchen to his father, retired Army Staff Sgt. Jonah Hughes, an Iraq war veteran, who suffers from such a severe brain injury that it’s hard for him to remember things like whether he showered, and sometimes how to shower.
Koen is always there, reminding him to take his anti-seizure pills, nervously double-checking his medicine box and squinting as he monitors his father’s behavior.
Koen is 10.
“Daaad! Your medicine!” pants a frantic Koen, who has a mop of light-brown hair and loves geography, Legos and Indiana Jones.
His burly 38-year-old father wears a black Wounded Warriors T-shirt and pocket pants, and speaks slowly, softly, searching for words his brain has lost.
“Got it,” he answers.
He’s what Koen calls a “wounded parent.” And, the boy says, lowering his blue eyes to the ground, “It’s different than having other kinds of parents.”
In households nationwide, hundreds of thousands of wounded parents have come home from the wars in Iraq and Afghanistan, and their children are struggling to navigate the invisible wounds — traumatic brain injuries and post-traumatic stress disorder, which together afflict an estimated 30 percent of the 2.7 million former troops.
The everyday toll on children is unprecedented, advocates for veterans’ families say, because their parents have complex injuries that would have ended their lives in wars past, before recent medical advances, and suffer from the psychic scars of multiple deployments.
The wounded parents often live with extended trauma and uncertainty. These veterans suffer blind spells. There are brain surgeries. And more brain surgeries. Hearing loss. Memory lapses. Excruciating sensitivity to bright light and noise. Dizziness. Insomnia. Addiction to painkillers. Agoraphobia. Increased risk of suicide and depression.
Their children often suffer social isolation. To avoid setting off their parents, they can be deprived of sleepovers or play dates or even a game of hide-and-seek. They’re anxious, worrying about whether their parents will survive.
While the children are often more resilient and compassionate than their peers, they are also more angry and frustrated. And they can be troubled by self-esteem issues and a loss of childhood because they often take on a parental role, according to a study by the Caster Family Center for Nonprofit and Philanthropic Research.
“They have this parent that doesn’t know how to play with them anymore. Or just can’t. The kids can’t run up and say ‘boo!’ or scream or jump on the bed or do the things that let them just be kids, because these are such triggers for the traumatized parent,” said Kate Lipton, a program coordinator for military children at the Kids Serve II Camp outside Atlanta. “The household just becomes this giant eggshell.”
In League City, Tex., Gabby Daughenbaugh, 11, has to remind her father, while completing a school assignment about family trees, that her great-grandfather died recently. Her dad, retired Marine Cpl. Donny Daughenbaugh, has trouble with his memory after he was shot in the face in Iraq, the bullet lodging near the base of his skull. It’s too dangerous to remove. “I’m his backup memory,” Gabby says. To relieve stress, she takes dance classes.
In Atlanta, Christian Aguilar, 10, has watched his father, an Iraq Army veteran, be loaded into an ambulance more than a dozen times. He hugs his teachers so often — sometimes 17 times a day — that he’s now receiving therapy for “secondary PTSD,” a common diagnosis for the children of veterans.
In West Hartford, because of Jonah Hughes’s frequent medical treatments, his children missed so much school that his wife decided home schooling would be easier.
Hughes has cumulative brain injuries from 10 bomb blasts during three deployments to Iraq. He was an infantry squad leader, performing hundreds of missions to push insurgent fighters from Iraqi villages. After the final blast in 2008, all he could see were blurry shadows. He couldn’t repeat back a basic list of four words and was flown to the Landstuhl Regional Medical Center in Germany, where an MRI showed bleeding in his brain along with injuries to his back, neck and right shoulder. He was in the hospital on and off for about three years.
It was so long that Koen began calling the hospital “my dad’s office.”
It’s a Friday evening, and after eating pizza, his favorite meal, Koen and sister Evie, 6, and brother Haakon, 5, are making explosion sounds as they plunge through the air and into beanbag chairs they have splayed out in front of the television.
“You can’t do those dangerous things,” his father cautions urgently.
While their home is what Koen calls his father’s “safe zone,” the war followed him straight into their living room.
“He worries we’re never safe,” Koen explains, eyes rolling. “We can’t do anything, so I don’t always listen. Then he gets angry, which is disastrous.”
Koen is often worried that he’s doing something wrong, something that could trigger his father’s anxiety. He wishes his dad could be happy and carefree.
Koen’s a curious kid, an explorer. His room is set up like “Indiana Jones’s office!” His bedspread is a beige quilt (“that’s what Indy would have!”) and he has an old-fashioned airplane hanging on a wire and a giant compass, a world map and a U.S. map on his walls. He recounts excitedly the magical adventures in the castles, markets and streetcars around Europe when the family lived in Germany, before the wounds.
Now they can barely brave the grocery store, so they often order online.
At home, Koen has a habit of leaving open the baby gate, although Jonah needs it to be closed. Easily distracted because of his memory problems, Jonah tends to forget to look after his 18-month-old son, Everett. Even if his wife, Blair, reminds Jonah, he can lose track.
When Jonah sees that the gate is open, he goes into a state of “heightened alert.” He gets exasperated, and Koen ends up chasing his baby brother around the house.
Jonah tries to help. But “sometimes he unloads the dishwasher into a sink of dirty dishes, or butters his toast and then puts it the toaster,” explains Koen.
“Yeah, I guess I do that,” his father says, looking embarrassed.
“We’re never afraid of him,” Blair says. “It’s that we worry and empathize with him. What’s most difficult is the exhaustion from hyper-vigilance or anxiety, which means he doesn’t have the energy to just play or be a dad.”
He breathes deeply and shuffles into the kitchen, where memory aids are posted about how to wash hands and how to do laundry. They were originally put up to help Koen, who has been diagnosed with high-functioning autism.
“But I ended up using them and adding more for my brain injury,” Jonah says.
Because of his autism, Koen often makes repetitive and loud noises, which sound a lot like explosions. This clashes with his dad’s sensitivity.
That Koen’s autism has him making exploding noises feels like “the universe [must be] playing a great big joke on us,” Blair says.
Anything could be a trigger
Jonah has a recurring nightmare. He’s been shot. He’s dying. And “the bad guys” are hiding in his leafy West Hartford home.
He desperately needs Koen, who is younger in the dream, to go across the street to the neighbors. But Jonah doesn’t know if Koen will safely cross the busy road.
He often awakes sobbing, sweating, unsure how to keep his son and family safe, unsure of how to cope with all that’s come before.
What’s come before includes Jonah struggling to understand that time in 2005 when his unit had trained more than 50 Iraqi army soldiers, only to find them burned to death in an attack the next morning. Or the time his unit came upon a vehicle engulfed in flames with American soldiers trapped inside.
“The smell. It never leaves you,” says Jonah.
These days, he can’t attend a barbecue with his kids because the smell reminds him of the carnage.
Families of veterans say this kind of phobia is very common, according to Mary Jo Schumann, associate director of the Caster Center.
Her study found that while there are many support services for veterans and their spouses, “that doesn’t always trickle down to the children,” she said.
At the Kids Serve II Camp, Lipton noticed that the kids are more independent, empathic and resourceful than their peers.
But she also notices that they express anger and frustration more often because those are the emotions they see in their parent who have PTSD or a traumatic brain injury. Lipton said she has met kids “who don’t know if they are allowed to smile, because they are told to be quiet since Dad or Mom has a bad headache. Or anything could possibly be a trigger.”
Rare family outings
The Hughes family is eating a late breakfast on a crisp Saturday morning not long ago. Koen’s munching on cheese and gulping down orange juice. They’re tossing around the idea of going out.
“We don’t leave the house very often,” Koen explains. Too many people out; too much “danger.” “We basically avoid most social situations,” he says.
They once stayed inside their home for so long — maybe three days — that neighbors who heard baby Everett crying called the police. The officers toured the house, visited with the children, realized that everything was okay and left, Blair recounted.
The family has visited the White House for special events where military and veteran families are invited. But in their daily lives in West Hartford, they often find it easier to just stay home. Sometimes they go to the movies, like they did recently to see “Cinderella,” but only in the middle of the day when there are no crowds.
When the family does leave the house, it’s often a draining experience. They circle parking lots for the “safest, best-lit spot.” They’ve been in a store where they had to leave a full cart in the middle of an aisle because Jonah couldn’t remember why he was there and wanted to suddenly leave. Blair once had to stop him from lunging across the counter at Dunkin’ Donuts when the young woman working there rolled her eyes at him for changing his order.
“We have discovered ways to cope with his anxiety but not eliminate it,” she says.
Jonah’s been in counseling. And he’s participated in adaptive sports programs for veterans and gone snowboarding with Koen.
Then there was that trip to Disney World, a risky effort to lighten the family’s mood.
They needed to use a wheelchair for Jonah because his legs go numb if he walks a lot. A girl in line for a ride kept putting her foot under his wheelchair, bumping into it. Koen worried that the girl would hurt herself and that he needed to protect his dad.
“I didn’t want anyone to hurt him,” Koen said. “I look out for him.”
By Emily Wax-Thibodeaux April 16