by Taya Kyle
Presented with a diagnosis at last, Susan and Chris searched for information that would help them be proactive or at least provide Christian with better care. They heard about Camp Sunshine, a place in Maine where families and children with Fanconi from all over the world gather over the summer for a week’s vacation—and a chance to share stories and information. So they went.
They’d only just gotten there when the group gathered in a big room and sang “You Are My Sunshine”—an almost-saccharine-sweet song popular in the 1960s. (It was actually written toward the end of the Depression by Jimmie Davis and Charles Mitchell, but it enjoyed a second life decades later.)
The family felt an immediate disconnect.
“It was like a Twilight Zone experience,” remembers Susan. Everyone was happy—something she just couldn’t understand. How could people whose children had the disease be so happy?
She wanted to leave.
“Give it two days,” said a counselor, reading her mind.
“I’ll give it to the morning.”
An hour or so afterward, the family met and bonded with the parents of a little girl. They stuck out the camp and ended up learning more from the other families than they’d found out from the experts or the book.
There were little things—the kids were often nocturnal, with far more energy at night than they had during the day. There were big, potentially life-threatening things—the kids sometimes didn’t know when they were cold, which could easily lead to frostbite or hypothermia.
The list of symptoms and consequences and dangers was exhaustive. The family struggled to process it all.
Soon after going to the camp, Christian’s blood counts started falling. That was bad on its own, but it could also lead to immediate drama: a minor injury with prolific bleeding could be fatal. Even internal bleeding was a danger. Bruises were easy for this active toddler to obtain and far more dangerous than they would be for others.
Regular blood transfusions helped save Christian’s life, but the arrangements were complicated and the constant procedure tiresome. A more permanent solution was needed.
Chris and Susan heard about a technique involving transplanting bone marrow tissue that would allow their son’s body to manufacture its own cells. While the procedure held out hope for a long-term solution, it was far from foolproof—in fact, the leading American hospital doing the operation had a shockingly low success rate.
They were ready to have the procedure done there anyway, but something didn’t feel right to Chris—a feeling, a premonition, perhaps even God speaking to him. In any event, they changed plans at the last minute, pulling out of the program days before it would have begun.
“It seemed like every single doctor in the United States screamed at us,” says Susan, recalling that experts felt the procedure was his only chance at survival.
Their concern was understandable. Leukemia was ravaging the boy, and even his parents felt he was approaching death. Christian’s body couldn’t even regulate its temperature—Susan had to bring blankets to keep him warm if they sat in the shade during the Florida summer.
With her son sinking fast, Susan heard about a new transplant protocol being developed in Germany. The method involved less toxicity than the American procedure, though it still involved deadly radiation and came with no guarantees.
It took a month to stabilize Christian in the ICU in the U.S. before he could be flown to Europe for the operation. His condition was so dire, a nurse traveled with them. The procedure went well, but the recovery was months long. It was an ordeal . . . and something of a miracle, as Christian did better than any of the other patients operated on at the same time.
All of this cost a tremendous amount of money—not just for the medical treatments but the adjustments that the family had to make to give Christian a somewhat normal life. Chris had a good job as a golf pro, but it was far from enough to finance what they needed.
His employer stepped forward to cover their share of the operation, an incredibly generous gesture.
There were many others.
Chris’s fellow pro Russ Holden met little Christian and, in Susan’s words, instantly fell in love with him. He decided to host a golf fund-raiser to help the family meet expenses. That led to the creation of Caddy for a Cure, a nonprofit that helps raise money for different charities. Christian and his younger brother Calen—born later with the disease as well—are now spokespeople for the organization.
Calen’s birth presented the family with more complications, as he, too, had Fanconi anemia. (The family’s three other children do not.) While the specific symptoms of his disease are different, much of what the family learned with Christian helped save Calen’s life and make treatments far easier; it also helped that unlike his brother, Calen’s blood type matched that of other relatives. Still, the list of surgeries both boys needed seemed endless.
Christian and Calen have not only survived past the four years once predicted for Christian; they’ve thrived. In the process, they have spread the word about Fanconi anemia to the general public, both formally and informally.
As hard as the journey has been, Susan maintains a sense of wry humor about it. Maybe that’s the only way to deal with a serious, little-known disease that hits you out of the blue. There’s humor, and there’s poignancy, in most of her memories.
“Every birthday we thought would be the last. Dog and pony shows, the works,” she says. “We literally thought this might be the last. Let’s do it big.”
The neighborhood loved Christian’s birthday parties. Who wouldn’t?
They’re now a family joke: Christian doesn’t have a birth day; he has a birthday month.
There were points when Susan literally yelled at God in a parking lot:
What did Christian ever do to you?!
But despite moments when she blamed God as well as fate, in the end, she believes her faith in God and her belief that God does things only for a reason was strengthened. The words of the Lord’s Prayer, one of the earliest most believers learn, took on new meaning as she prayed. She reconciled herself to the idea that his life on earth might be short—three minutes, three years, three decades—but there would be an eternity beyond that.
“Our lives are like a grain of sand,” she told herself. “But, Lord, don’t let him suffer.”
Susan freely admits that her faith ebbs and flows, and she hesitates to describe herself as anything other than a normal, flawed human when it comes to faith. She says she’s not as fervently religious today as she was at the peak of Christian’s distress. Her struggles seem like the struggles many of us have, navigating modern life as well as faith—even before great tragedies descend.
“I get up and try every day, not to be a Christian,” she says, “but to live for Christ. That’s the struggle, figuring out what that would look like. . . . Some days we hit the mark. Some days we don’t.”
In some ways, her son Christian has been the family conscience from birth, piping up from the back seat of the car as Susan complained about someone else’s driving, reminding other family members of what they said about how one should behave, and just generally being a positive reminder of how to cope with bad situations.
Today, the Fanconi Anemia Research Fund supports a range of research programs working on helping children with the disease. Medical advances and simple awareness have helped families cope far better than they did a decade ago, and life expectancy is greatly improved. Bone marrow surgery is still the key to much treatment; new, promising therapies are being tested every day.
What impresses me is simply the perseverance it took for Christian and his family to get to the point where they are today. Multiply that perseverance by 150,000—the estimated number of children born with birth defects in the U.S. each year—and you begin to see a measure of human strength.
Some of these children—they total about 3 percent of the babies born each year—are far worse than Christian and his brother. Each deserves an equal chance not
just at survival but to become contributing members of our society—a proposition that takes money and many helpers.
If at times the kids and their handicaps test our capacity for optimism, in the end they greatly enhance it.
“Lead with love,” says Susan. “You’ll find common ground.”
Out of the Fire
Mel and Brian Birdwell
So many lives were changed on 9/11, including mine and Chris’s. But perhaps none took quite as dramatic and difficult a turn as Brian Birdwell’s.
On Monday, September 10, Brian Birdwell spent a routine day at work. The onetime ROTC distinguished graduate was a lieutenant colonel, working on the Department of the Army staff at the Pentagon as the executive officer to the deputy assistant chief of staff for installation management.
It was not by any means a dramatic assignment, but Brian had already seen plenty of dramatics in the first Gulf War and the humanitarian crisis in Honduras and other parts of Central America following Hurricane Mitch in 1998. His résumé included a Bronze Star.
By the fall of 2001, Brian; his wife, Mel; and their twelve-year-old son, Matt, were living a quiet life in the suburban Washington, D.C., area. Church, volunteer work, home-school lessons, Friday TV movie night—it was pretty much a routine middle-class existence. One might even describe it as “boring.” Brian certainly does.
That changed the next day.
Since starting at the Pentagon, Brian left for work around 5:30 in the morning, arriving just before 6:25. He headed up to his office on the second floor in the “E Ring.” In case you’re not familiar with the Pentagon building, the five-sided structure is made up of five separate “rings.” From outside, these look like individual buildings butted against each other and connected by spokes that extend from the innermost ring. The spokes contain hallways connecting the separate rings.
The E Ring is on the exterior of the building. This outer ring has grand views of the surrounding area; the offices there are generally considered the most prestigious.
Around 9:00 a.m., a coworker told Brian and others to turn on the television news. They watched in stunned silence as New York’s Twin Towers smoldered. They stared in disbelief as the video of the second plane striking the South Tower was replayed. They understood this was no accident, that America was under attack—and yet that made no sense. No sense at all.
Brian excused himself and headed for the men’s room, walking down Corridor 4, turning left, and entering the lavatory. A few moments later, having just washed up, he stepped out into the corridor, passing some elevators.
The time was 9:37 a.m.
Boom!
The sound was incredibly loud, even to a man who knew war. His thoughts scrambled.
Construction?
Demolition?
Bomb?
Before his conscious mind could provide an answer, everything around him turned to pain.
Blackness.
The building, so solid a moment ago, disintegrated.
In its place: fire.
Tremendous fire.
The terrorists who had taken over American Airlines Flight 77 from Washington Dulles had slammed the plane into the Pentagon, striking the E Ring a short distance from the hallway where Brian was walking when the plane hit.
Somehow in the fog of smoke, Brian managed to figure out where he was and what he had to do to get to safety. The walls around him were crumbling. Because of security precautions, Brian’s ID would not unlock the doors to the nearby rings. He’d have to get to the A Ring and escape from there.
That was half a football field away.
He started moving and somehow managed to get close enough to the corridor at B Ring to realize that the fire doors there had closed. He was trapped.
Miraculously, two colonels stepped out of the B Ring around the same time and found him. But his ordeal was just beginning.
Rushed to the hospital in a commandeered SUV, Brian was admitted with burns over 60 percent of his body. Some 40 percent of those were third-degree burns.
I don’t want to be too graphic, but to give you an idea of what happens to a human being in a fire:
Third-degree burns destroy the outer two layers of skin. The burns can then destroy the body under the skin—fat, muscle, bones, nerves. (When fire goes this deep, the result is sometimes classified as fourth-degree burns.)
Obviously, the pain is excruciating. I have heard many medical professionals say that severely burned patients endure pain unmatched by any other type of injury.
Besides the damage to the skin and the internal parts of the body, the fire robs the body of essential fluids, dehydrating the victim; it’s common for a victim to breathe in smoke and even flames, damaging their lungs and respiratory system. In a severe case, the victim may go into shock. The damaged body may have trouble keeping its proper temperature, resulting in a host of other problems.
There’s more, but suffice it to say that being burned over a significant part of your body is extremely life-threatening.
In Brian’s case, the doctors and nurses who first treated him were not optimistic about his chances for survival beyond a few hours. They gave him less than a 1 percent chance of survival.
Back home, Brian’s wife, Mel, was working with Matt on a science lesson when a friend phoned and told her about the World Trade Center attacks. Mother and son went into the living room to watch the news reports; after a short while, they returned to the kitchen heavyhearted and went back to work.
Then a friend called with news that the Pentagon had been hit.
Television images followed, showing the impact area—exactly the side of the building where Mel knew her husband worked.
She feared the worst—that her husband had been right at the point of impact when the plane hit.
The pair prayed. Prayer and God had always been an important part of the Birdwells’ lives; its importance would increase and become more intense as the days went on.
There was no news from her husband, no call or message. Somehow Mel managed to stay calm enough over the next few hours to care for her son. But there was little she could do for him, or for her husband, for that matter, aside from praying and waiting to hear the absolute worst. Finally, she got a call from the husband of someone who’d been with Brian after he was injured, telling her that he was on his way to Georgetown Hospital.
Their story is intense and dramatic even in the details of getting to the hospital. I have been with Mel in Washington, D.C., where we inadvertently traveled the path Mel took to get to her husband. To this day it is traumatic for her to relive it. Mel’s few moments of relief knowing her husband was alive were replaced by anxiety and worry when she arrived at the hospital and discovered the extent of his injuries. For several days, Brian’s life hung in the balance. A full team of specialists cared for him. Slowly, he began to recover.
It took three harrowing months before he was released to return home. Miraculously, he made his way back to the Pentagon six months to the day after the attacks.
That’s the simple version of the story; it leaves out the many sleepless nights, the physical pain of the injuries, the difficulty of getting off painkillers. It ignores Mel’s many fights to make sure her husband got the kind of care he needed—rumor has it the staff took to calling her a pit bull. It neglects, too, the difficult emotions their son went through as he came to terms with his father’s mortality, the strains that hospitalization and rehab put on the family’s lives, the subtle but very real disruption of everyday life.
It fails to mention that his trip back to the Pentagon was more for show than a true return to work. It would be quite a while before Brain was capable of that.
The brief version of his recovery also leaves out the many efforts of neighbors and family and friends to try to help the Birdwells. It neglects to mention the country’s response to their courage, from President Bush to random well-wishers. It skips lightly over the deepening of the Birdwells’ faith and even how their trials came
to inspire others.
But no matter how many details are related—the fact, say, that Brian couldn’t go to the bathroom on his own or even open a milk carton when he first came home—it’s impossible to fully convey the deep despair that comes when an adult suddenly finds him- or herself reduced to the role of helpless infant.
I first met Mel Birdwell in the Texas State Capitol building in 2013 when I traveled there in support of the Chris Kyle Bill, which allows governments to count military experience when considering hiring new employees. Mel was there because in the decade and a half after 9/11, her husband had given up one career and taken on another—state senator for Texas.
I must tell on myself: I almost got us kicked out for talking too loudly.
And laughing. You’re apparently not supposed to do that while the Senate is in session. As Mel recalls it, one of the security people came up and told her, “Ms. Birdwell, I’ve never removed a senator’s wife before. But if you keep on talking so loudly . . .”
We took the hint.
What intrigued me then, and continues to amaze me now, was Brian’s decision to leave the Army and become a politician.
The first, leaving the Army, is understandable; he’d been injured so badly that his career and ambitions were put quite off the track; they would make it extremely difficult to advance. Many career military officers come to a point when they realize that they will not be able to advance beyond a certain level, if only because the math is so daunting—the Army simply doesn’t need more than a few hundred generals. (Technically, the service is allotted 231, with another 310 of similar rank split between the Army and other branches. The Army has averaged just under 350 total members of all general ranks during the past several years.) That is out of some 475,000 soldiers; not great odds.
But why volunteer to be an elected official? He could, and in my opinion there would be no one better, teach American History and the Constitution. He has educated me a ton, and I am pretty sure that not only could he do it in his sleep, but he probably does do it in his sleep. But politics?