"Hold your family close, while you've got them. Something can happen, and, in a minute, everything can change."
    Deanne Barnes and her husband, Michael, know firsthand how life can change in an instant. 
    One Sunday night, while they were in a meeting in a separate area of their church, and their middle son, nine-year-old Griffin, was at kids’ choir in the church’s gymnasium, Griffin fell while walking upstairs. "The fall didn’t really cause any problems," explained Deanne, in an interview with The Christian View. "The reason he fell was that he became dizzy and his whole left side went numb. After he fell, he couldn’t get up because of the left side being numb." Fortunately, fellow church member and emergency room physician Dr. Clif Caldwell was nearby. EMS was called, and Griffin was taken by ambulance to a local hospital. A computerized axial tomography (cat) scan revealed a blood clot in Griffn’s brain. A second cat scan more closely inspected revealed an abnormal collection of blood vessels called arterio-venous malformation (AVM), which had become weakened and ruptured. The Barnes family was immediately told that Griffin needed surgery at Emory Children’s Hospital (Egleston), and, at 3:30 a.m., Griffin was flown by helicopter while his parents drove to Atlanta.
    In intensive care for nearly three weeks, Griffin was in a drug-induced coma until his brain stopped swelling. "They wanted him to keep getting better until his brain was back to normal, so that they could do surgery on a normal brain instead of a swollen, sick brain," said Deanne. 
    An AVM, Deanne explained, is something that a person may have been born with and not know about unless a problem arises. 
    "Unless you have a bleed, or it causes pressure which makes you have headaches, and you have a cat scan or MRI, you could never know you had it," added Michael.

     
                            Michael and Deanne Barnes 
                with sons (clockwise) Tucker, Riley, and Griffin


    In Griffin’s case, the AVM bled only a certain amount initially. "For some reason, it didn’t continue to bleed," said Michael. "We were fortunate."
    That was not the case with another child, whom they met at the Ronald McDonald House while Griffin was in pre-surgery rehabilitation at Scottish Rite Hospital. 
    "A little girl had an AVM, and had had no symptoms until she became unconscious," said Deanne. "Hers had bled, and they had to do the surgery immediately. They couldn’t wait."
    "Hers bled over a quarter of her brain," said Michael. "Within 24 hours, they did surgery. The neurologist had told us that what they would like to do is let the swelling go back down, but, obviously, you’re only going to be able to let that swelling go down if the bleeding stops and you can control the pressure. The pressure is what the big deal is." 
    Griffin’s AVM was in a part of his brain that affects his left side. "Depending on where the AVM is," said Deanne, "it could affect your thinking or memory. It depends on where the brain injury is as to what is going to be affected."
    The little girl, Michael said, had some paralysis to begin with, but was running around a couple of months afterward. She was at Scottish Rite for speech therapy, he said. "Her sentences were kind of jumbled up. You could make out what she was saying, but she still needed work."
    Other patients and their families also affected the Barnes family while they were in the hospital at Egleston — a not quite two-year-old boy who was put on life support and came close to dying, but is now home and normal — a three-year-old boy who had had a reaction to an immunization shot and died.
    "We would hear about somebody who had come in and their child had not made it," said Deanne. "We would hear a Code Blue called for a child. It’s very heartbreaking. You’re sheltered from it unless you’re sitting in a hospital and realize that that goes on all of the time."


     
                                    Griffin Barnes

    Michael explained how difficult it was from the first night they were there. "All through the night," he said, "there were different things – like coming to get your signature to be able to drill a hole in the top of your child’s head to put a tube in there. It was a signature to do this and a signature to do that. Sometimes, they would get a signature to do one thing, but, before they even did it, they decided to do something else. We would like to hear, ‘This is the plan’, and the plan works, but it would be, ‘This is the plan’, and then, two hours later, the plan changed. We had absolutely no control over this at all. We didn’t understand what they were saying. We were really new into it at that point. We didn’t know what an AVM was. When a brain surgeon comes in and tells you how it works, it’s nothing to him, because he sees it every day. He’s talking about how your child’s brain is constructed and that they’re going to slide a tube down the middle of his brain.
    "The second night, everything seemed very calm, and then a nurse came in to shine a light in his eye and then his other eye and said, ‘Oh, that looks a little different than the other.’ She walked out, got another nurse and said, ‘What do you think about this?’ Before we knew it, there were eight people in the room preparing our child to get a cat scan, because the bleeding may have started again. Ten minutes earlier, everything was just as calm as it could be, but then it seemed like the whole floor had converged on our room. That’s not a good feeling. It happened twice within the first three days.
    "The room was freezing. His body temperature was another thing they had to deal with. He would go from lying on a cooling blanket with no covers on him to being hypothermic and needing a blanket over him and warm air blown on him. 
    "Every night, it was something else that they were dealing with. He had a nurse assigned only to him. With that much medicine, something was always running out, something was always going wrong.
    "When we were seven or eight days into it, we were thinking that, surely, this is about over, but then the surgeon came in and said, ‘No, you’re just starting. This is just the beginning of it.’ All of the wind comes out of your sails. That was the time we faced reality and knew that we were in it for the long haul."
    The Barneses relied upon the faith and prayers of their family, friends, fellow church members, and co-workers, several of whom made the trip to Atlanta to visit, and many of whom wrote words of encouragement on Griffin’s page on a website, www.carepages.com. (CarePages was begun by Eric and Sharon Langshur, when their son, Matthew, was diagnosed with a heart defect. They set up a website so that those concerned could be updated on Matthew’s condition and could post their thoughts on a message board. The Langshurs eventually created their own company, so that anyone needing a CarePage could have one, free.) The hospital encourages patients’ families to set up a CarePage, Deanne said. She and Michael wrote daily updates on Griffin’s progress. "It was a very good thing," she said. "It gave us encouragement, and it kept everybody informed. We printed it all out – everything we wrote and everything other people wrote – to make a book of the whole story."


  
                                 Griffin, with his nurse, Amy


    The Barneses even wrote on a message board, themselves, as visitors to a page on another website, www.caringbridge.org (a website started by Sona Mehring when a close friend went through a life-threatening pregnancy and premature delivery). The Barneses were concerned about a teenager who had been in an automobile accident, and had suffered brain trauma and lung damage, two weeks before Griffin arrived at Egleston. The teen is the son of a pastor of one of Griffin’s nurses. "Deanne wrote something to his Dad on his page," said Michael. "He wrote back. It was really neat that we started a relationship with somebody we had never met."
    In addition to those they know, the Barneses were visited by Tim Cash, chaplain for the Atlanta Braves, and his wife; Atlanta Braves pitcher John Smoltz, who held Griffin’s hand and prayed with him; and Scott Rigsby, who set a world record for being the first person without legs to complete an Iron Man competition. Griffin was also given a Clemson jersey and a cap signed by his fellow church member, Clemson Tigers Head Football Coach Tommy Bowden. "Best hat I ever got yet," Griffin told The Christian View. "We were kind of the talk of Scottish Rite, as many people as we had come in and see him," said Michael. "The day John Smoltz came, he really was the talk of the place." "All of the patients came out of their rooms," said Deanne. 
    They were also visited by the Reimer family, who once attended the Barneses’ church. They brought a large picture of an angel standing guard over a sleeping child, with Psalm 91:11, For he shall give his angels charge over thee, to keep thee in all thy ways. "It was extremely fitting at the time," said Michael. "Always, but it really hit home at the time."
    When Griffin first arrived for rehabilitation at Scottish Rite, he could not hold up his head. "He slumped over all of the time," said Michael. "Within the first week, he was holding his head up and attempting to walk. But it was really rough."
    "After three weeks in rehab, he was in pretty good shape, not completely but pretty normal by the time they did the surgery," said Deanne.

 
   Griffin, wearing his Clemson Tigers cap signed by Coach Tommy
    Bowden, on the day he moved to rehab


    They returned to Egleston for the surgery, which lasted 11 hours. "They would do some surgery, and then, when they thought they had it all, they would do an angiogram that would show the brain, and they would see that they didn’t quite have all of the AVM out, so they would do more surgery," said Deanne. "They did three angiograms before they were satisfied that that was all of it. But, once the AVM is out, it’s out and won’t come back. It won’t cause problems. All he has to do now is get stronger on his left side, with therapy. He can walk, and he can move his left side, but kind of slow. He’s not like he used to be, but he’ll get back to normal. He does physical therapy, with a little bit of occupational therapy. He hasn’t really needed the speech therapy, but they kind of do it all. His talking was always pretty good, except when he first woke up, but that was because of the tubes down his throat, which had made his throat raw. His speaking and reasoning were never affected; it was all his arm and leg."
    "When we came home, he couldn’t open his left hand all of the way out, but he’s getting a little more strength," said Michael. "There’s no reason to expect anything other than 100% recovery, other than possibly being a little weaker than before. There’s no reason he shouldn’t be able to do everything he did before, skateboarding and everything."
    Griffin came home six days after his surgery, and he was reunited, for good, with his older brother, Tucker, and younger brother, Riley.
    The boys had visited Griffin some in Atlanta, but they mostly stayed with their maternal grandparents, Charles and Betty Gilreath, in their hometown of Easley, South Carolina. (Their paternal grandparents, Walter and Peggy Barnes, live across the state in Florence.) "It was good that they could be together," Deanne said of her other two boys. "That was almost two months of their needing to go to school, needing to do homework. Somebody needed to raise them, basically, for the two months we were in Atlanta. We wanted their life to be not completely turned upside down. We wanted them to stay as normal as possible. Both of them got to spend the night with friends on weekends, just like they would have. And my Mom would bring them to our house, some, just so they could be in their own house, to play with their toys and feed the dog. Under the circumstances, things for them were normal."
    ‘Normal’ is something the Barnes family appreciates, now more than ever. Whether Griffin is drawing, listening to his Elvis or Johnny Cash CD’s, reading, watching television, or playing with his brothers, ‘normalcy’ in the Barnes household is welcomed, because the Barnes family knows firsthand how quickly normal can change without warning. 
    "We went to church one night, and I didn’t come home again at all for 50 days," said Deanne. "You really don’t have much control over much of anything. It’s all in God’s hands." Through the experience, she said, she learned that people will be there for you. "In every way, they were there for us," she said.
    "God knew it was going to happen before it happened," said Michael. "And He knew what came next and what came after that. I knew that I was not going to be able to change things. Up to that point, I was kind of in control of everything. I can fix a bicycle and a scooter and just about anything, but I can’t fix his brain. I had no answers, at that point. I realized that God was in control of the situation, and that was okay. I think that knowing that, and encouragement from other people on those Care Pages is what kept us calm about the whole thing. People talked about how we sounded ‘all together’, but I think that comments by other people are what helped us stay that way. People need to know what encouragement means for somebody who is going through something like that. It means everything in the world."
    Griffin’s father said that he never questioned the situation. "I never asked God why it happened to us," said Michael. "Why not? Why wouldn’t it happen to us? Actually, two weeks before it happened, I was in Alaska, with Samaritan’s Purse. I was walking down a dirt road, with a friend of mine, and I said, ‘My life has been so good that sometimes it’s scary, because something is bound to happen.’ And then, two weeks later, it did."
    He was, however, grateful that it happened after he had returned from Alaska, because he had been in a remote place, isolated. "It was not a place where I could just ‘hop on a plane’," said Michael. "It would have taken him several days to get home," said Deanne. "I would have had family members with me, but it wouldn’t have been the same."
    Both Michael and Deanne are thankful for Griffin’s progress.
    "The first day or so," said Michael, "we were thinking, ‘When will he be skateboarding and riding a bike?’ 
    "At some point, we realized that that didn’t make a difference. We were talking about our child coming out of a coma. Somewhere along the line, it changed in seriousness.
    "But," he added, "we saw people go through a lot worse than we did."
    "We researched AVM," said Deanne. "A lot of times, when it bleeds, people don’t make it to the hospital at all. If it’s too bad of a bleed, they don’t make it. Thinking of that, we were willing to accept anything—a wheelchair forever, or whatever—for him to be alive and back with us. 
    "So, for him to not only be alive and back with us, but for him to be so close back to normal, it is a big blessing."
    "A lot of people would want to know what is good about this," said Michael. "I think that it has, in various ways, already touched people."