Waiting For A Miracle
Three Years Ago, a Young Man Survived an Accident That Left Him Unable to Speak. His Eyes Are Open, but He Can Barely Move. Doctors Say He May Never Wake Up, but His Family Won’t Give Up Hope.
The first time the phone rang at Patti Bohr's house that Monday night, it was her son Josh calling from work.
Since his promotion to front-end manager at the Darnestown Food Lion, the 17-year-old had started working more hours after school. Josh wanted to pay off his 1995 Pontiac Sunfire, which he parked diagonally across two spaces in the store's lot; that way friends driving by on Route 28 could tell that he was at work. Patti and Josh's dad, Roy, were happy that it had become his parking spot—they liked knowing where he was.
"I think I'm catching a cold, Mom," Josh said around 9:30. "Do we have anything I can take?"
He'd had a busy weekend—a homecoming football game Friday night, a dance Saturday followed by a supervised coed sleepover in town, work on Sunday. He'd had this Columbus Day off from school, so he'd hung out and watched the movie Cruel Intentions with Stephanie, the girl he was falling for. They weren't boyfriend and girlfriend but were headed that way.
Josh had talked to his mom about Stephanie on a trip to the mall a week earlier to find him a suit. At five-foot-four and 120 pounds—thin but with a muscular upper body—he wasn't easy to shop for.
When Josh called that night in October 2000, Patti told him she'd leave something out for him. She put medicine in the kitchen and went to bed. Josh's 15-year-old brother, Michael, was asleep in his room.
In three days, Patti would join her husband, Roy, at Virginia's Massanutten Resort, where he'd gone Sunday to start their fall vacation. Roy had a good vacation package through his telecommunications job at the National Institutes of Health. Patti didn't have as much time off from Verizon, but at least they'd spend a long weekend together in the mountains. Josh and Michael would be home alone, but she and Roy trusted them.
The phone rang again just before midnight. Michael answered, then woke his mother. It was a shock-trauma nurse calling from Baltimore.
Jo sh Bohr is lying in bed in what once was the family den, his upper body raised at a 30-degree angle so he doesn't choke. He wears a T-shirt and athletic pants. His light-brown eyes are open, but nobody knows what he sees. His long eyelashes curl at the ends. A white towel is tucked under his chin.
Except for two small marks on his forehead and a scar from surgery, which his dark-brown hair helps hide, there aren't any visible reminders of his accident. He isn't hooked up to machines.
On the mantel above the fireplace is a photo of Josh and four friends in suits and boutonnieres, getting ready for homecoming. A note reads: "Josh, we miss you and we pray for you. Much love, Bobby and Eric."
Next to it is a photo of Josh holding his two-year-old niece, Melissa. That sits in a frame engraved with the words MEMORIES ARE STORYBOOKS OF OUR LIVES. Hanging from the ceiling are two Native American dream catchers—webbed hoops thought to trap the good parts of dreams and let the bad parts slip through. At the end of the mantel, a white Beanie Baby wears a halo.
A string of eight-balls hangs on a floor lamp near the fireplace. Two days before the accident, a friend of Josh's broke the pair that dangled from Josh's rearview mirror. "Now I'm gonna have bad luck," Josh told her. The broken eight-balls were recovered from his car, and the friend bought Josh a new pair. Now he has four.
La te on the night of October 9, 2000, Josh swerved his Pontiac Sunfire to avoid hitting an injured deer on Route 28. He hit a telephone pole. The road was dark and wet, and the driver who'd hit the deer was disabled and couldn't move it. The man was on the phone with police when Josh came up over a small hill.
Josh wasn't speeding. He was wearing his seat belt, and his air bag deployed. The fire rescue service had to use "jaws of life" tools to get him out of his car.
Since that night, Josh has been unresponsive. For a few weeks he was in a coma. Then his eyes opened.
Doctors call his condition vegetative. Such patients have sleep and wake cycles. They have active reflexes and reactions to pain. Some respond to light, sounds, or movements.
Except for once a month when she dials her own phone number to listen to Josh's outgoing voice-mail recording, Patti hasn't heard her son's voice since he called from Food Lion. But she's convinced he can hear hers.
"We got to get your winter stuff out soon—huh, Josh?" she says as she takes the splints off his wrists to give his fingers some relief.
His clothes—long-sleeve T-shirts, sweatshirts with wide necks, pants that are easy to take off—go in the dresser the family brought down from his bedroom. Josh's stereo, often tuned to hip-hop station WKYS, sits on top, near a stack of books on tape—The Wandering Hill, The Killer Angels.
"He's going to wake up," Patti often says. She means for good.
Every night when she and Roy put Josh to bed, they leave a light on in his room—just in case.
"He 's not a morning person," says Charmaine Wulff, one of Josh's nurses. She rubs his face and holds his hand. She's never heard Josh speak, but she knows his moods.
Charmaine says caregivers see changes and expressions that machines can't. She's been with Josh ten hours a day at least three days a week for nearly two years. Other nurses cover days she doesn't work. Some weekends she brings her three children from Frederick to play with Josh's niece and nephews.
Before Patti leaves in the morning—Roy goes to work around 5:30 so he can be home earlier—Charmaine takes Josh's temperature and checks his vital signs. While his parents are at work, she gives Josh his formula, vitamins, and medications—one for digestion, one to help prevent seizures, and allergy medicine or ibuprofen when he needs it. She gives him a suppository every other day. She bathes and changes him, cuts his nails, brushes his teeth, works his arms and legs to preserve their range of motion, gives him back massages, reads to him, and, when it seems like he's upset, sits and talks to him.
Sometimes she tells him about her 16-month-old son, Joshua—when she started at the Bohrs, she was pregnant and Joshua was one of three names on her list.
Charmaine tells Josh what she's about to do—"I'm taking your shirt off, Josh." As she washes his hair, she says, "Squeaky clean. It smells good, Josh. I like this shampoo."
A barber comes to give him haircuts. A dentist visits to clean his teeth.
Charmaine can tell when Josh doesn't want to do his daily exercises—arm and leg lifts and bicep, wrist, and foot curls. "His mouth will pucker and pout," she says. She calls this his "fussy face."
She feels him resist the upward push, especially on his stronger right side. Doctors are uncertain what Josh hit his head on, but the right side of his brain took the brunt of the impact, so the left side of his body is weaker. They say he suffered a contusion injury, from the brain hitting his skull, and a shearing injury, in which the neurons are pulled and stretched. It's also likely that he damaged his brain stem, the brain's alerting center.
Sometimes when he's in his wheelchair, Josh makes moaning sounds or lets out choppy sighs that make Charmaine wonder if he's had a bad dream or a flashback.
He pulls his shoulders slightly inward to try to raise himself. Charmaine knows he's fidgety, so she moves his chair for a change of scenery or turns the television channel, often to ESPN. When he's tired, Josh yawns. When comfortable and content, he focuses more and holds his stare. "You gotta look at Josh's eyes," she says. "They talk."
That's also where she sees sadness. When she started in January 2002—11 months after the Bohrs brought him home—Josh cried a lot. Charmaine told him over and over that he was going to be okay and she was there to take care of him.
She read to him from Today I Feel Loved!, a book she reads to her children. She often noticed tears when she read:
There is no one
Quite like you.
You are special
And no one
Could take your place.
No one else
Has your fingerprints.
No one else
Has your palm prints.
No one else
Has your footprints.
There is no one else
Who can say a word
Exactly the way you do… .
Doctors say the crying might be a reflex—there's no way of knowing. Charmaine thinks it's emotion. Like the Bohrs, she has her beliefs. She tells Josh's parents, "It's more of a God thing than a doctor thing."
Pa tti doesn't remember how she made the one-hour trip to the hospital in Baltimore. When she and her other son, Michael, arrived at the University of Maryland Medical Center, the nurse who'd called Patti approached her, crying.
"You'll have to excuse me," the nurse said. "It's been a really sad night."
Patti's parents, Tina and Andy Hernandez, arrived around 1 AM from Silver Spring. Patti was afraid Roy wouldn't get there soon enough.
She saw Josh within the hour. "Stay with us," she told Josh. "Your dad's not here—you gotta hold on."
She kept saying, "Wake up, Josh. Wake up."
Roy got to the hospital from Massanutten around 3 AM to find his son hooked up to a ventilator.
"He looked like he was sleeping," Roy says.
Doctors inserted an endotracheal tube, gave Josh oxygen and medications, and ventilated him. A CT scan at shock-trauma showed swelling of his brain. They put a catheter inside his brain ventricles to divert the spinal fluid. At first the treatment worked. Then the pressure started to rise again.
Roy and Patti remember director of neurotrauma Dr. Bizhan Aarabi telling them that Josh was "75 percent gone." Doctors would have to remove a section of Josh's skull, through a decompressive craniectomy, for him to survive. Maybe they should let him go, he said.
Later that morning, someone on Dr. Aarabi's team told them the same thing. He talked about Josh's quality of life.
Roy told that doctor that he and his wife understood their options and that they'd go ahead with the surgery on Josh's skull. Roy said, "I never want to hear again that I should let my son die."
Th e Bohrs tell people Josh is in a coma. He isn't, but Roy doesn't like the term "vegetative."
"That means he's a vegetable," he says. "I just can't picture him that way."
When Patti and Roy saw Josh's light-brown eyes a few weeks after the accident, they thought he'd pulled through. None of the doctors or nurses had told them that most people in comas open their eyes. It doesn't mean they're okay—it just means they're no longer technically in a coma.
Josh hasn't spoken or followed directions since the accident. But his eyes are open for much of the day. You see more of them when he's lying down than when he's in his wheelchair. His eyelids flutter as he's drifting off and close when he falls asleep. He twitches if someone accidentally tickles him while he's getting his hair washed. His eyes open wider if there's a loud noise.
Many patients in this condition aren't on life support. Their vegetative functions—breathing, blood pressure, and temperature regulation—are working. They're fed through a tube because they can't chew and swallow when they need to. Some can repeat movements, like blinking or squeezing, on command.
In 2002, researchers described a condition called the minimally conscious state, in which patients have more cognitive capabilities than those who are vegetative. They might reach or make other gestures. Some track with their eyes or respond verbally to questions or commands.
The first six months after a brain injury are the most telling. That's when patients recover most brain function. The younger they are, the greater their chances: Many teenagers with traumatic brain injuries survive and recover.
"After the accident, we found out that everybody knew somebody who'd been in a coma," Roy says. "They'd all woken up."
Dr . Aarabi says it would take a crystal ball to predict what will happen when someone with injuries like Josh's comes in. In the past three years, 46 patients were admitted to the University of Maryland's R. Adams Cowley Shock Trauma Center with brain injuries as serious as Josh's. Sixty percent died or remained severely disabled; 40 percent made a good recovery, including a few who had been in vegetative states. One of Dr. Aarabi's patients, a young man with an injury similar to Josh's, is now a student at Towson University.
Once a patient is six months from injury, the chances of recovery diminish. As time goes on, it becomes more unlikely. After a year, the condition is known as a persistent vegetative state. When doctors feel there's no chance of improvement, they call it a permanent vegetative state. Dr. Aarabi has never seen a patient recover after being vegetative for more than a year.
But it has happened: Last summer, a 39-year-old Arkansas man emerged from a vegetative state after 19 years. He answered questions as if it were 1984, when a car accident left him paralyzed and comatose. He didn't speak but could eat and respond with grunts. According to the Guardian in London, "He has been able to tell his family that he remembers snatches of the conversation from around his bedside."
"Those are exceptions, not rules," says Dr. Michael Makley, medical director of the Brain Injury Unit at Kernan Hospital in Baltimore. Yet Makley understands why families like the Bohrs hold onto such stories. "The problem is everybody knows about a person that woke up after 19 years—what can you say?"
Makley hasn't seen any neurological improvement since Josh left Kernan in January 2001.
"Nobody really has any magic for this type of patient," he says.
The Bohrs have noticed small improvements, such as increased movement and more noticeable reactions to sound, but nothing that shows up in test results.
Makley used to say he didn't know if Josh would wake up. Now he says, "I don't think so."
It 's hard to know what to say when you meet Josh. Patti and Roy make it easy: They introduce him. They tell Josh why you're there and what's going on around him.
"You tell him about big things like 9/11 and the snipers," Patti says. "You wonder—when he wakes up—will he remember?"
If there's a football game on and Roy misses some of it, he'll ask Josh what the score is. When Patti gets home from work, she often greets Josh with "Hey, Bud." When Josh coughs loudly enough to scare his dad, Roy puts his hand on Josh's shoulder and tries to calm him down. If Josh makes a burping sound, Patti will say, "Excuse you, Josh." Sometimes Roy plays the outgoing voice-mail message and holds the phone up to Josh's ear so he can hear his own voice.
Occasionally Josh's noises make it seem as if he's listening. During a drive to the doctor, Roy mentioned that Michael was talking about going to medical school. He said Michael was smart enough to do it. As soon as he referred to Michael as "very bright," Josh made a loud sound.
"Of course, if you don't agree, Josh," Roy said, "you could just tell me you don't agree."
One morning about two years ago, Roy came downstairs to find Josh sitting up in bed. He was turning his head from side to side. Roy thought maybe this was it.
"I just watched him," he says. "I didn't want to startle him."
Josh lowered himself to the pillow a few seconds later. Roy didn't tell Josh's daytime nurses right away because he wanted to see if anyone else saw Josh do it. Doctors can't explain it.
"It does put you on a roller coaster of feelings," Roy says. "Is he screaming inside that he wants to say something or do something?"
Roy hasn't forgotten that moment, just as Josh's Uncle Andy hasn't forgotten his dream. About nine months ago, Andy dreamed that Josh sat up in bed and started talking to Patti.
It's not unusual for Josh's family and friends to dream that he's speaking. When Andy told his mother, Tina, about his dream, she said she'd just had the same one.
A few days later he told Patti, who was sitting at the end of Josh's bed. She said she'd had a similar dream that week. Andy looked over at Josh: "I saw tears rolling down his eyes."
Pa tti had four miscarriages beforeshe had Josh in 1983."When he came, it was a miracle," she says. She and Roy, now both 48, met at Frostburg State University and married in 1974, when they were 18. They had their daughter, Amy, the same year. Josh was born nine years later.
Josh and Michael have spent their lives in Poolesville, a town of 5,200 in western Montgomery County, where there are still no Starbucks or traffic signals, and the cover of Josh's 2001 yearbook reads: "Poolesville, where everybody knows your name."
Patti's mother helped care for Josh when he was a toddler while Patti worked part-time for Verizon's predecessor, C&P. Her parents are Mexican, and although Josh never spoke much Spanish, he liked showing off the little he knew. He occasionally called himself Nacho—his faded doodles of that name are saved on a dry-erase board on his grandparents' refrigerator—and his AOL screen name was GuapoEse, Spanish slang for "good-looking guy."
Roy coached his sons in baseball on weekends. Josh also played basketball.
"Josh was always the small one," Roy says, "but he'd go after the big guys and wouldn't back off." He also wouldn't back off his dad when they argued—he'd get right in Roy's face.
"He has a little of his dad's temper," Patti says.
Josh had a thing about money. When his grandmother took him and Michael to McDonald's, he'd decline the milk shake because he didn't want to spend her money.
"Josh was very much the businessman from a very young age," says Amy, 29. At the time of the accident, he was working 40 hours a week at Food Lion and also working a second job delivering pizzas on weekends.
Am y, who lives near her parents, got closer to Michael and Josh as they got older. She has struggled—she's unmarried with three young children—and Josh never hesitated to tell Amy that her then-boyfriend wasn't cut out to be a father. He said she deserved better.
When they were younger, Josh and Michael played sports and video games and fought the way brothers do.
"If someone tried to mess with me," Michael says, "he'd defend me."
Josh and his mother were close. He'd sit on her lap and sigh, "Oh, Mom." He often said, "I love you."
Patti took Josh and the kids to the beach every June with her girlfriends. The dads usually stayed home.
"Josh absolutely loves Ocean City," she says. "He loves jumping the waves, he loves the boardwalk."
While in high school, he got hooked on wrestling. He and his friends videotaped themselves body-slamming one another. He watched WWF at night with Michael or Roy, who got into it when he saw how much Josh loved it. Josh would walk up behind Patti and jokingly put her in a half nelson. He was working out in the morning before school so he could try out for the Poolesville wrestling team that fall. If he had time off and wasn't watching wrestling, he was bowling.
Roy says Josh probably would have ended up at the University of Maryland, where he and Patti got their degrees after transferring from Frostburg.
Josh didn't love school, but he liked to write. One Thanksgiving he stood up at the table and read a story he'd written about his grandfather growing up as a Hispanic kid in New York.
One story Josh wrote in his sophomore year haunts his family. They found it while cleaning out his room. In it, a boy is waiting at home for a call from his girlfriend. Her mother calls instead to tell him her daughter has been in an accident. The girl swerved to avoid a deer, but she hit the animal and struck her head on the steering wheel. She falls into a coma.
Du ring Josh's three weeks in shock-trauma, his parents stayed two blocks away at the Ronald McDonald House, where families get free accommodations while their children are treated in nearby hospitals. Roy had to go back to work a week after the accident, so some nights Patti stayed alone. She was afraid to get phone calls. She didn't want to sleep in case something happened.
"I kept wanting time to go by," she says, "because then he'd be okay." During the day she sat with Josh and told him people were praying for him. She held his hand. "Josh, you're a fighter," she often said. "You'll beat this."
She worked mornings at her Beltsville Verizon office and went to see Josh every day around noon. She'd been there 20 years, so coworkers were like family. They held a bake sale to raise money for Josh. A friend at work had lost a son to a drunk driver. Tragedy like that made Patti feel fortunate: She still had her son.
Before she was promoted to a supervisory position in 2002, Patti took calls from customers complaining about service and phone bills.
"If I have to hear another stupid problem that you think is a problem …" she'd say to herself.
Josh's hospital room was usually packed. Roy, who started wearing his son's silver chain necklace, drove up every night from his NIH office in Rockville. Patti's sister came down from Philadelphia. Michael caught a ride with friends or neighbors after school. He started sleeping in Josh's room at home and wearing his brother's watch and T-shirts.
After two weeks in shock-trauma, Josh opened his eyes.
"We expected him to speak at the same time," Roy says.
Pa tti and Roy took Josh to his cousin Celina's wedding last summer in Philadelphia. He'd gained 25 pounds, so they dressed him in Roy's suit.
Charmaine went along to make traveling easier. Before the ceremony, she asked Josh to stay quiet. Usually he makes sounds every few minutes, at least a cough or sigh, as if catching his breath.
"No whistles, no catcalls," Charmaine told him.
He was silent during the ceremony. At the reception she noticed that Josh reacted when the DJ played his favorite song, "Ride Wit Me."
"His eyes kind of sparkled," she says.
The doctors say there's no reason not to take Josh out. A trip to a familiar place or somewhere he'd enjoy might stimulate his brain. The Bohrs and Charmaine try to sit outside with him every day.
Josh went to his high-school graduation in 2001. He sat in the audience with his parents, close to the stage.
"He's missing out on the best years," Patti says. "He was so looking forward to being a senior."
At Michael's graduation last year, Josh sat in the same spot. Roy tapped on Josh's shoulder to clap for Michael.
Patti took Josh to Michael's girlfriend's church on Christmas the first year he was home because Michael asked her to. Josh went to Buca di Beppo for a family birthday dinner.
"At first I felt weird about it," Amy says. She noticed people staring. "It's a look like 'Why would they bring him here?' "
Patti wishes they'd take him out even more. She'd be okay with taking Josh to the mall.
Roy has thought about taking Josh to a baseball game—they used to have season tickets to the Orioles.
The family celebrates most holidays in Poolesville, but there's a ramp at Josh's grandparents' house, so he's been there for Christmas. Last year Patti put prime-rib juice on Josh's lips during Christmas dinner. For New Year's Eve, she puts a little sparkling cider—he always loved it—in his feeding bag.
On special occasions, Patti and Roy give Josh gifts and give each other presents from him. Patti usually gets jewelry from Josh; Roy gets clothes or CDs.
"We try to pick a card we think he might give," Roy says. These days they usually look for a card that says "thank you."
Jo sh's Britney Spears poster made the trip from shock-trauma to Kernan Hospital intact. It went up near the others: wrestler Stephanie McMahon and the Redskins, along with a get-well card from Food Lion employees and customers.
Patti and Roy filled a bulletin board with photos, including some homecoming pictures, so Josh would be surrounded by familiar faces.
Patti and Roy got to Kernan every day around 6 PM for three-hour visits. Soon they alternated nights so one of them was home for Michael. When Michael went to Kernan, he and his parents caught up during rides home.
Josh's best friends, Bobby and Eric, held his hand and prayed by his bed. They talked to him about senior-year drama—who was going out with whom, whether Poolesville had won the football game. Stephanie came a few times a week.
"For a while it seemed like he'd turn his head towards me," she says. "Whether it was coincidental or he knew I was there, he did it." She talked to Josh the most when they were alone.
About a week into his stay, Patti thought she heard Josh say "Mom." The speech therapist thought she'd heard it, too.
"It actually looked like he was looking at me," Patti says. It never happened again.
Roy and Michael kept Josh updated on sports. Patti read to Josh from a Harry Potter book. They put pizza, his favorite food, under his nose.
"His mouth would start to move," Roy says, "which said to me that the brain is still processing that this is something to eat."
Patti dabbed his lips with ice cream and put popcorn, often her and Roy's dinner, close to his face. They thought the scent of Josh's cologne might trigger something. Roy told him that if he woke up he'd get the prettiest nurses.
A friend's mother-in-law came to Kernan with a handkerchief once used by Mother Teresa. She touched Josh's face with it, hoping he'd speak and it would be one of the three miracles that would qualify Mother Teresa for sainthood.
That Christmas, the Bohrs put up a tree in Josh's room. They gave him the angel-bear Beanie Baby that sits on his mantel.
His Uncle Andy, who's interested in holistic medicine, brought friends to Kernan to try Reiki, a Japanese form of energy healing.
"It's basically trying to call on the universe to allow the person to heal," Andy says. He didn't see any change, but he still occasionally leaves his hand on his nephew's heart for a while.
Josh had physical, occupational, and speech therapy every day. Patti let the nurses know when Josh was in pain.
"It was a facial expression, the way his mouth was set," says Starmaine Reagen, a nurse on the Brain Injury Unit. "She wouldn't leave until he was comfortable."
Jo sh went back to shock-trauma twice during his stay at Kernan. In November 2000, Dr. Aarabi put the removed section of Josh's skull bone back in. He later inserted a shunt to fight hydrocephalus, the collection of cerebrospinal fluids inside the brain's ventricles, a condition that can prevent a patient from regaining cognitive capabilities. Nothing helped.
"We can't do anything else," Aarabi says. "We essentially rely to a major extent for the brain to repair itself. All we do is to keep the head pressure down."
Roy and Patti saw other people at Kernan waking up. Sometimes that frustrated them, but it also helped. "It gave us hope that people do come out of these things," Roy says.
When Josh came to Kernan, he was at a Level 2 on the Ranchos Los Amigos Scale, which doctors use to categorize a patient's level of coma. Level 2 is defined as a "generalized response," meaning that Josh reacts in inconsistent and nonpurposeful ways and demonstrates the same reflexive movements regardless of what's around him.
He's never gone beyond that level. But Roy and Patti assumed he'd stay at Kernan until he woke up. At the end of January 2001, they were told Josh had to leave because he wasn't making progress.
"They're good people," Roy says, "but it's a business. When the insurance ran out, that was that."
The Bohrs called other brain-injury programs, including Baltimore's Kennedy Krieger Institute, but Josh couldn't be admitted unless he was awake. The other possibility was a long-term-care facility.
"They thought we'd take him to a nursing home, plant him there, and come visit him?" Roy says.
Patti had worked in a nursing home when she was 15. She worried about the care he'd get when he couldn't tell someone what he needed. The decision was made: Josh was coming home.
Be fore an ambulance brought Josh back to Poolesville on February 9, 2001, Kernan nurses trained Patti and Roy on his care: medications, moving him, doing his exercises.
Roy set his alarm for every two hours so he could rotate Josh to prevent fluid collection or bedsores.
Roy thought about a roommate Josh had at Kernan who'd died in his sleep. What if his son stopped breathing? When Josh was sick—he's had pneumonia twice—Roy stayed downstairs on the couch. Michael helped out when needed.
Neighbors across the street set up meal donations through their church. A home-cooked meal was delivered every few days for the first six months that Josh was home. The Upper Montgomery Athletic Club, where Roy had coached Josh and Michael, sponsored a bake sale. At Cugini's Pizza, where Josh worked, customers tossed spare change into a can with his name on it. An elementary-school girls' soccer team held a Goals for Josh fundraiser and sent him cards. Some profits from Poolesville's 2001 Valentine's dance—where decorative hearts on the walls included one for "Josh and Steph"—went to Josh. The high school held a student-teacher basketball game in Josh's honor. His parents took him to the game in his wheelchair.
Poolesville residents and Patti's and Roy's coworkers raised money for Josh. Roy says they've saved some of it to use when Josh wakes up because they may need to make changes to the house.
Between their two health-insurance policies—Roy signed up for a second one after the accident—Josh's hospital bed, wheelchair, and pump were covered but not his feeding formula; the insurance company told the Bohrs that he'd need to eat anyway.
"It got to the point where one policy was paying for the food; the other was paying for the bags," Roy says.
They applied for a program through the Department of Health and Human Services but were denied because they made too much money. Unless they could pay out of pocket for full-time nursing, they'd need to care for Josh on their own until he turned 18 in June 2001 and became eligible for Social Security disability; a special program would cover a home nurse.
Th e family took turns: Roy, Patti, and Patti's parents stayed with Josh once or twice a week. Roxane Saenz, a friend who lived down the street, volunteered to stay one day a week. Amy or Andy usually covered the fifth day until Roy's sister started helping out.
The schedule was simple: Patti usually gave Josh his medications and breakfast around 8 AM and made sure he was dry. She bathed him before doing his exercises—"so he's more relaxed," Roy says. Then she got him dressed before she left for work.
Except when Roy was home, Bobby and Eric came over during lunch, and sometimes after school, to lift Josh out of bed, strap him into his wheelchair, and push him into the living room.
"Sometimes his eyes would be closed and we'd walk in and he'd wake up," Bobby says. It wasn't until the Bohrs inquired about a home nurse that they found out they could get a Hoyer lift, which uses a padded sling—Josh lies or sits on it—and a hydraulic pump to transfer him in and out of bed.
Roy and Patti didn't want to go to work. Every morning when he came downstairs, Roy thought Josh might be awake.
"You knew as soon as you left the house that's when it was gonna happen," Roy says. "In time we grew to know that maybe today's not the day."
They'd ask him to hold their hand. Sometimes Josh squeezed back with his right hand, but they could never be sure that he meant to.
They had their dogs jump up and lick him. Josh's grandfather put his face close to Josh's and talked into his ear: "Come back to us."
At Andy's suggestion, they took Josh to four acupuncture sessions. Neither Patti nor Roy noticed any change, but Andy did.
"He has a habit of gulping air, and his breathing seemed to settle down a bit," Andy says.
Amy cried on Josh's shoulder about her boyfriend, hoping her brother would react.
"It was harder for me to be optimistic and be let down than to be realistic," Amy says. Amy's three-year-old son, Eric, and daughter Melissa kept telling Uncle Josh to wake up. Sometimes they kissed him.
Strangers from as far away as Mexico were saying prayers.
"How many people have to pray for you before God gets it?" Roy wonders.
Pa tti and Roy's youngest child is 18. They'll soon celebrate their 30th wedding anniversary. They thought they'd be enjoying the freedom parents get when the kids are out on their own. Instead, they sleep with their bedroom door open so they can hear Josh downstairs.
They carry around guilt that they rarely discuss. Patti wonders if she should have let her son work so much. Roy gets angry with himself for getting Josh the Pontiac Sunfire. The salesman pointed out two cars that day. One was sportier; one was safer.
"I didn't buy him the safer car," Roy says.
They've never gone to therapy for themselves, but Roy thinks about it. Sometimes they disagree about what's best for Josh. Roy sometimes has him in the wheelchair for longer than Patti likes. She thinks he's more comfortable in bed, where he can change positions.
Roy asks, "Would you like to be lying in the bed all day?"
Patti doesn't think they need to be in the room with Josh every minute. On weekends, Roy often watches sports, with Josh nearby, or uses the computer in Josh's room. He won't mow the lawn if he's alone with Josh because he doesn't like to be outside that long.
"Everything else loses its importance," he says.
Patti has been putting down new floors in the house. Her dad, who's 82, came over and put up crown molding in the living room. She's going to fix up Josh's bedroom. "Things just can't stop," she says.
She and Roy worry about Michael. He's never talked much about the accident or about Josh.
"I'd just rather not talk about it," he says.
Michael talks to his girlfriend if he needs to. He's stopped paying attention to wrestling. When he's home, he's usually playing video games with friends or doing homework for his classes at Montgomery College. He wants to transfer to the University of Maryland.
"I feel like I have to do better in school," he says. "My brother and my sister never went to college."
Last year Michael talked about wanting to be a doctor. Now he's not sure.
He works a lot of hours at Food Lion as a front-end manager. He says he's following in his brother's footsteps. He usually parks his car diagonally across two spaces at the Food Lion. His parents look for it when they drive by. They tell Michael to drive safely.
"My mom didn't want me to get my license," Michael says. "She didn't want me to take the job. She didn't want me to work as much."
But Patti and Roy don't push—they're happy to have him home for dinner once in a while. Patti knows she's more indulgent than she should be: "It makes me want to hold onto him."
So on after the accident, friends offered to sit with Josh so Patti and Roy could have an evening out. But Patti and Roy rarely took them up on the offer—they didn't want to be away from Josh more than they had to be. They've lost touch with a lot of friends. "They don't know what to say," Patti says.
Many of Josh's friends are at college now. They say it gets harder.
"Still, to this day, you look at him and you're like, 'Get up. What are you doing?' " Eric says of his occasional visits with Josh.
Stephanie used to see Josh every few weeks. "Then the gap just kept getting bigger and bigger," she says. She started worrying that Josh's parents would think she'd forgotten him, which made it harder to go to their house.
She graduated in Michael's class, but she didn't go up to Josh at the ceremony. She wants to start visiting again. "Maybe Eric will go with me—or one of the guys—so it's not as weird. 'Cause it's been so long—it'll almost be like seeing him for the first time again."
In the past three years, Roy and Patti have gone on about ten dinner dates.
They've had a few vacations—Patti's parents often stay with Josh—but they call a lot. Charmaine told Patti that Josh gets down—she saw him cry the first time Patti took a business trip. "His routine changes," Charmaine says. "His grandparents watch television in Spanish. It's little things like that I think he knows."
Roy says Josh's accident has brought him and Patti closer. They put Josh to bed together almost every night around 9. They each unbutton or unzip one pant leg and take off one of his splints. They use his Hoyer lift to lay him in bed.
There's one expression Josh makes when he's pulling himself up in bed that Patti has come to know. "That's when he looks most like he's smiling," she says.
Before they leave the room, Patti gives Josh a kiss good night. Roy touches his face or pats him on the chest. They wonder if he has dreams.
On an October morning after the third anniversary of Josh's accident, Patti and Charmaine are getting him ready for a trip to Kernan Hospital. He sees Dr. Makley about once a year at the Bohrs' request.
A few weeks earlier, Roy took him to a gastroenterologist to have his feeding tube checked. Patti is using a vacation day today. She's learned not to expect much from the visits.
"If they were going to say something new," she says, "I'd like to hear it."
Patti wheels Josh down the ramp, parks his wheelchair in the driveway, and starts the green Chevrolet Beauville. They got the van free from the brother of a friend. His handicapped daughter had died, and he'd heard about Josh's accident.
Charmaine brings down the wheelchair lift and steers Josh backward into the van. She and Patti buckle him in and get down on the floor to hook the wheelchair legs to built-in straps that keep it from moving. Charmaine sits in back.
"I gotta bring this to child height," Patti laughs, raising the seat. She grips the wheel tightly as she drives. She can navigate the van, but not as well as Roy can. When she parks it later, she ends up on the lawn. Patti laughs at that, too.
Dr. Makley asks Patti if Josh is doing anything to let her know he's there. "Is he tracking anything? Watching television?"
"Sometimes it looks like he is," Patti says.
Makley gets close to Josh's face. "Hey, Josh, it's Dr. Makley," he says. He asks Patti to move to Josh's right, then his left. "Look at your mom, Josh. Can you look at your mom for me?"
Josh doesn't focus. The doctor puts one hand on Josh's elbow, the other on his hand, and stretches his arm. "You guys are doing a great job on range," he says. He pulls Josh's eyelids up and points a light into them. He moves Josh's head from side to side. He and Patti discuss medications and a seizure Josh had in June.
At Patti's request, Dr. Makley orders an EEG and brain scan. She wants to know if there's been any change in Josh's brain function, something the Bohrs might not see. Makley asks what else he can do today.
"The magic pill?" Charmaine says.
Patti and Charmaine take Josh downstairs to the floor where he once lived. His former physical therapist spots Patti and gives her a hug. "Hello, Mr. Man," she says to Josh, patting his leg.
Another nurse comes by as Charmaine gives Josh a bolus, a quick feed in which the formula goes directly into his tube. "Still got those eyelashes," she says.
Th e Bohrs try not to think a lot about the future. "I'll wait however long," Michael says.
Medical research suggests that the life expectancy for a vegetative patient who is at least 15 years old ranges from around 8 to 12 years from the one-year anniversary of the injury. "But the literature doesn't really tell us about Josh," Dr. Makley says. "He could survive much longer."
A news story last fall about a vegetative woman in Florida whose husband wanted to remove her feeding tube made the Bohrs face hard questions: What happens if Josh doesn't get better soon? What would Josh want?
"If I knew for sure that this was going to be it for him for the rest of his life, I don't know—I don't think I would've made a different decision," Roy says. "I don't know how much of that is selfish, but I just wouldn't let him go."
Patti says that if she were in Josh's position, and there was any chance, she'd want that chance.
"There are too many new things happening in medicine," Patti says. "If you gotta wait 19 years, you gotta wait 19 years."
Patti and Roy haven't written a will, but Patti knows they need to. If something happened to them, she thinks she'd turn to her brother, Andy. Amy is a single mom, and Michael is too young. Patti's parents, who often drive out to Poolesville, couldn't take care of him because they're in their eighties. Josh's grandmother has one wish: "That he wakes up before I die."
Amy wants her children to know their uncle. Sometimes Melissa helps Patti give Josh his medicine by handing her the water Patti pours into his feeding tube. When the kids see Josh's hands or feet fall down, they go over and pick them up. Amy's youngest, Sean, doesn't remember Josh any other way.
Patti, who often babysits her grandchildren, calls her daughter, Amy, a very close friend. They talk every day.
Amy always knew her mother was strong, but watching Patti with Josh inspires her: "I admire her now more than I ever did before."
Ch armaine knew she wouldn't be working with Josh forever. She'd never been with the same patient for more than a year; she'd stayed with Josh for nearly two.
She started telling Patti and Roy early last fall that she'd be leaving to work an overnight shift so she could see her children more. The Bohrs didn't want to believe her.
"She's like part of our family," Michael says.
They'd come to count on Charmaine to ask the doctors the right questions. She ordered Josh's food and supplies and set up his appointments. Josh knew her.
On Halloween, Charmaine's last day‚ Patti tells her Josh isn't happy. Patti can tell. Charmaine reassures Patti that she'll call and visit.
"We've got plans—right, Josh?" Charmaine says before starting his morning routine, which includes a Friday manicure. "It's a secret."
Charmaine is happy with what she's seen over time. She says it's still early. He moves more than he used to. He turns himself on his side. He's more relaxed: When she started, his hands were like clenched fists, so tense that his nails dug into his skin.
"It's small changes," she says. "And one of these days it's going to be big, where he'll open his eyes and say something like 'Hey, I'm here.' "
Josh will have to get used to spending his weekdays with someone else. Charmaine isn't worried. She'll tell the new nurse he likes his hip-hop music, especially when he's doing his workout, and show her what his expressions mean. And she'll be back to see him.
She hugs Patti and Roy before she goes. "See ya around—be good," she says to Josh as she rubs his face.
A week later, Charmaine brings her kids to a party at the Bohrs' house for Melissa's sixth birthday. Charmaine holds her son Joshua in her arms and puts his face up close to Josh, who's sitting in his wheelchair in front of a window so he can see the kids playing outside.
"Yo u're hoping for a happy ending," Patti says. She and Roy touch Josh as much as ever. They watch him while he falls asleep. They remind him that they love him.
They're happy with Josh's new nurse—they like the way she comes back into the room to tell him goodbye before she leaves.
Michael talks to his brother when they're alone at night, often after a late shift at Food Lion, when his parents are asleep. He tells Josh what's going on at work. Nothing has happened to make him think Josh is listening. "I just hope it," Michael says.
Michael has started going to church every Sunday—sometimes with Amy or his father. He prays for his brother to wake up.
Roy started keeping a journal for Josh. He writes about what kind of day people had, how work was, if the Yankees lost. In October he wrote about the solar flare. He says it's a way for Josh to catch up when he comes back.
This summer, they're hoping to take Josh to Ocean City. They know it'll be hard, but Patti thinks he'll like it. Charmaine says if the Bohrs ask, she'll go with them. Josh's mom plans to take him to the boardwalk—and rent a house near the beach.
"I want a place where he could sit on a porch and see the ocean," she says.
She thinks that one day Josh will tell them where he was all this time, what he felt, what he remembers.
"I want to come back here sometime and let Josh talk to them," Patti says on the way to Kernan Hospital. "He'll say, 'See? You shouldn't have given up on me so soon.' "
Josh's eyes are closed at night and open during the day.
Josh's brother, Michael, and his parents, Roy and Patti, talk to Josh throughout the day. Roy doesn't like thinking of Josh as vegetative: "That means he's a vegetable. I just can't picture him that way."
Patti and Roy spend so much time at home with Josh that they've lost touch with a lot of friends. "They don't know what to say," Patti says.
Charmaine Wulff, one of Josh's nurses, reads him a favorite poem: "There is no one quite like you. You are special …" Charmaine, who recently took another job so she could see her children more, says, "You gotta look at Josh's eyes. They talk."