My son, Shawn, is now 19 years old. On September 7, 1996, his life changed forever. It was an ordinary day like any other. The temperature was high, and the weather was beautiful. As we lived only two miles from the Lake of the Ozarks, our whole family decided to take a family outing to the Lake for a swim. We loaded our car full of kids and my friend, Kelley. Her husband rode one motorcycle with our friend, Dusty, on the rear end. Our friend, Terry McDonald drove another motorcycle. Terry offered to take one of the boys for a ride to the lake on the back of his motorcycle. Shawn quickly volunteered. Terry was 42 years old and had been riding motorcycles for years, in competition and on the road. He had many trophies in his living room at his Lake Arrowhead home. We made sure Shawn had on long jeans, a shirt, shoes, and a helmet, besides his swimming gear.

Our outing at the lake was perfect. We had a great time that day, playing in the water, swimming, sitting on the boat ramp talking. We were discussing life, philosophies, and Terry's new girlfriend. During that conversation, Terry made the comment to me and Dusty, "If I died today, I would die a happy man". That comment came back to haunt me later.... As we left the lake, Jason was supposed to ride on the motorcycle with Terry. Jason forgot and got into the back seat of the car, where he was immediately surrounded by other kids. Shawn shrugged his shoulders. He was certainly willing to take two motorcycle rides. Shawn was 12 1/2 years old.

We took off in the car first. Terry waited until we got to the end of the gravel to take off so he would not have to eat gravel dust all the way down the road. The second motorcycle waited even longer, as they had problems getting the bike running properly. A few minutes after reaching the blacktop, almost to our own gravel road, we came upon a pickup going the other direction, driving down the middle of the road, pulling a boat. It was a red and black truck. The driver was right in the middle of the blacktop. We had to get clear over almost off the side of the road in order to avoid being hit, and we had a small Toyota. I made a comment about drivers who take their half out of the middle, and we went on home. The motorcycle carrying Kelley's husband, Max, and our friend Dusty, pulled in the drive about 10 minutes later. Kelley asked where Terry and Shawn were. They had not seen them on the road. We thought maybe Terry had taken Shawn to the convenience store for a soda so he could have a little longer ride or to pick up some soda. Kelley and I had planned a trip to the grocery store to pick up some supper anyway.

Kelley and I got in the car after changing from our swim gear. We made it about halfway down the mile of gravel separating our home from the blacktop of Lake Road 7-9 when we heard the sirens. Kelley said, "Drive faster". I told her, "If it's Terry and Shawn, it won't do them any good for us to have an accident trying to go too fast on this gravel". We got to the blacktop and followed the sound of the sirens, towards the fire station. Soon, we came upon a line of cars all pulled over to the right side of the road. I parked my car behind the rest, and Kelley and I got out and began to walk towards where the ambulance was parked up ahead. Kelley began to run. I continued to walk. I could not see a car in the ditch, nor any vehicle of any kind. I heard some of the other people who had gotten out of their cars murmuring about a motorcycle accident. The grass in the ditch was so tall, however, that I still could not see anything. Kelley must have heard the same murmurs I had before she had started to run.

Kelley ran past the police officer who tried to stop her. In slow motion, I saw her lean over and point down into the ditch. "That's my nephew", she stated to the police officer and the ambulance crew. (Kelley and I have always been as close as sisters, and my children have always called her Aunt Kelley). When I heard her say that, I began to run also. I guess I must have called Shawn's name, but the police officer grabbed me before I could get to the ditch. By that time, however, I could hear Shawn's voice. I knew then that at least he was alive.

Kelley asked the ambulance attendant to cover Terry's face. He was dead, and he had horrible head wounds with blood everywhere. I could barely see Shawn, but I could tell he had blood everywhere too. I gave his name and insurance information to the police officer and one of the ambulance attendants. The police officer (who was a Missouri State Patrolman) asked me if my son was driving the motorcycle. I told him, "No, my son is only 12 1/2 years old". "Are you sure he's only 12 1/2?" he asked, "He looks a lot older than that". That seems as if it will be imprinted on my brain forever. That whole day does, but that question seemed so ridiculous at that moment in time. Shawn is tall for his age. Now, at 15, he was almost 6 feet tall. He has had facial hair and has looked more mature than he is since he was 11 years old; but, at that point in time, the officer's question seemed to me to be the height of ridiculousness. My answer to him was, "Yes, I am his mother, I was there when he was born. I think I would remember how old he is." It may not have been very nice, but I was not in the mood for what seemed like silly questions at that moment.

To me, it seemed to take forever for the ambulance crew to bring my son up out of that ditch. At that point in time, they were planning to take him to the Lake of the Ozarks General Hospital by ambulance. They told me I could ride in the ambulance with him. I gave my car keys to Kelley and asked her to go home and tell everyone what was going on and then meet me at the hospital in Osage Beach (a 30-mile drive). After she left with my car, the plans were changed. They transferred Shawn in the ground ambulance to the fire station, which was a few blocks away. At that point, they were waiting for the Life Flight helicopter to come and pick him up and take him to the University of Columbia Hospital in Columbia, Missouri. Lake Ozark General had already refused to take him because they did not have a neurologist or a neurosurgeon on staff, and he had a bad head injury. He had also vomited and then breathed some of it in, aspirating, so then his breathing was also compromised. He was in and out of consciousness, sometimes screaming and flailing at the ambulance crew, fighting them ferociously, and sometimes still and quiet. They were trying to put an airway down his throat so that he could breath properly, but he continued to fight. They finally had to give him a shot that paralyzed him in order to get that accomplished. The only time I was allowed near the ambulance was when they asked me questions about his general health and allergies.

I was informed that they intended to fly him to the hospital in Columbia. They then informed me that I could not ride with him in the helicopter. I was stricken. I had sent Kelley, with my car, to Osage Beach. One of the ladies at the fire station offered me a ride to the hospital in Osage Beach. I really had no idea where this hospital was or even really where Columbia was, other than it was in a generally northern direction. I also had no idea at that moment which hospital in Columbia they were taking him to. I met Kelley at the hospital in Osage Beach. She had picked up my cousin, Tom, as she felt she was not in any shape to drive. I drove from Osage Beach to Columbia, after finding out what hospital and general directions from the Emergency Room crew at Lake of the Ozarks General Hospital. I was an employee of LOGH at that time, working in the Medical Transcription Department.

That was one of the longest drives of my life. I had no idea of the extent of my son's injuries, I was going someplace I had never been on skimpy directions, and driving gave me something to concentrate on besides worrying. I did not even know for sure what to pray for, so I just prayed all the way there. When we arrived at the ER in Columbia, they had a 12-year-old boy who had been brought in as a John Doe. I explained to the lady there that I had given them all of his information, insurance cards, identification, even his social security number to the ground crew and the flight crew before the helicopter took off with him. She was very upset that they had managed to lose his name. I told her I didn't care if they lost his name as long as they had not lost him. Shawn was taken from the ER (eventually) to the Pediatric Intensive Care Unit, where I began a long vigil.

Shawn was mostly in a coma for days. The accident was on a Saturday. By Tuesday morning, they pulled the respirator. They were giving him intravenous nutrition, pain medications, antibiotics, all sorts of stuff. I finally talked them into reducing the pain medication, as I felt it was keeping him too sedated to come out of the coma. They knew from the beginning that he had a broken nose and had broken facial bones along with his frontal and ethmoid sinus bones. He had no long bone fractures, though, which was unusual for an accident of this type. He had stitches in two places on his face, where he had been cut by something, and stitches on the back of his left hand in two places. His back and buttocks and legs looked like raw hamburger from "road rash". Mostly that first few days, they tried to keep him fairly immobilized and still and treated his road rash, trying to keep him stable until he woke up so they could determine the extent of his injuries. He had come in on a back board and in a cervical collar (neck brace), and they had done his first x-rays through those. They were not very good x-rays, so they wanted to do more.

That first night, they drilled two holes in his skull to relieve the pressure on his brain from any swelling due to the head injury he had received. They put a pressure catheter into one of those holes to drain excess fluid off his brain and to monitor swelling and pressure. I was at a loss as to how to help my son. I felt so helpless and useless there beside his bed, watching the monitors. His blood pressure was too high, his heart rate too fast. He developed aspiration pneumonia. They pumped antibiotics into him. I didn't know if he could hear me or not, but I held his hand and talked softly to him. I sang to him also, lullabies that I had sung to him as a baby, car songs that I entertained the kids with on long drives, old church hymns, anything that came to my mind. I didn't think anyone else had heard me, but one of the nurses told me later, "When you sing to him like that, his blood pressure and heart rate come down to normal levels. You just keep doing what you're doing. You are helping him, even if you don't know it." On some level, he must have known I was there and been comforted by it.

By Wednesday, they were able to take him down for more x-rays. They had tried to take the neck brace off which apparently caused him pain, as he cried out. After the x-rays, two neurosurgeons came in and told me, the pediatrician who had been in charge of the case, and the nursing staff that they were taking over the case. The pediatrician who had been handling it bowed out of the room. The man in front of me was Dr. Jimenez, the head of the NeuroSurgery Department. His companion was Dr. Knottmeyer, the Chief Resident of that same department. They informed me that Shawn had broken his neck in two places, the top two vertebrae, C1 and C2. He had also fractured the base of his skull. He was very lucky in the fact that the neck fractures were clean breaks, with no splintering, so any damage to the spinal cord was minimal.

Finally, here were doctors who would listen to me. At my request, they took Shawn off of the heavy pain medicines that he was on and gave him Tylenol #3 instead. He then began to be more and more alert and awake. They finally got him off of the IV lines and gave him real food. It was only jello and other liquids at first, but he was HUNGRY. After a few more days in the PICU, they transferred him to the regular pre-adolescent floor, then on to the Rusk Rehabilitation Center, also there at the University Complex, which specializes in head and spinal cord injury rehabilitation.

Dr. Ed Wright of Rehabilitation Medicine and Dr. Janet Farmer of the Neuropsychology Department directed Shawn's testing. He had lost 10-15 I.Q. points in the areas of memory and had very low scores on gripesthesia (which is tactile sensations in the skin). Fortunately, Shawn's I.Q. was high enough to be able to learn new techniques to compensate for his losses, and he still has an intelligence level that is far above average.

He had what is called retrograde amnesia for days after the accident. In other words, he could not remember the accident at first. He did not remember the entire summer or the first 3 weeks of that school year. It came back gradually, and he remembered the accident in nightmares. He would wake up screaming, "Look out for the truck, Uncle Dusty, Uncle Max, watch out for the truck!" He eventually remembered that a truck pulling a boat (a red and black truck) had been a little too far over the middle line. The mirror on the driver's side of the truck had hit Terry in the face, breaking the glass in the mirror. This was where the cuts on Shawn's face and left hand came from. When the glass hit him in the face, he put his hand up to protect his face.

The really sad part of that is, even though the mirror was later found in the ditch by a neighbor, whoever was driving the truck did not stop to even help or see if they were alive. Two young men (ages 18 or 19 or so) were at the scene of the accident. They sat at the edge of the ditch, believing that both Terry and Shawn were dead -- until Shawn began to scream. They then flagged a car down and asked them to call an ambulance. Those young men told me that they were riding by in a truck. The man who drove the truck went to his lake house to drop off his kids, and he came back in a car. They also told the police that another motorcycle drove by just a few minutes after the accident and that they believed the two motorcycles were racing. It was a nice distraction for the highway patrol. They were so busy worrying about the other motorcycle and the fact that the two motorcycles might have been racing down the lake road, they did not bother to investigate the truck. No driver ever came forward. Nobody ever took any responsibility for the accident, Terry's death, or Shawn's injuries. They didn't even bother to call and see if Shawn lived or died. I have learned to live with that, even though it still makes me angry and frustrated at times. I know that God will take care of that. I have always believed that what comes around goes around. They will have to live with that guilt for the rest of their lives.

Shawn has had to have two fusion surgeries on his neck since his accident, both with bone grafts, one from his own hip and one from donor bone. He was in a neck brace for almost 2 years. After his second surgery, he was in a halo device which was bolted into his skull in four places on his head. He has come through the surgeries and his physical difficulties amazingly well. However, since he already had ADHD, and then had TBIS, each condition worsens the other. He has been dealing with the TBIS since.

We have had family counseling. He sees an individual psychologist at this point in time. It is not only a difficult thing for the injured person to live with, but TBIS is a difficult thing for the family of the injured person to live with also. It is hard sometimes to explain to siblings why one child has such wide emotional ups and downs, why this one child may have to be dealt with in different manners than they are. What they feel sometimes is that he has different rules or different expectations. We have to constantly remind ourselves that this one child has different limitations, physically and emotionally.

As hard as it is for our family to deal with his limitations, we have had to fight multiple school systems regarding the 504 plan that is set up for Shawn. They have hesitated to write an IEP (individualized educational program) because that is mostly done for special education students. Many school authorities have ignored his 504 plan, or stated that it is not written plainly enough by the physicians. Even bus drivers have had problems with some of his physical limitations, downright ignoring the doctor's orders to allow him to ride in the front of the school bus, and his social/emotional limitations and the effects of his TBIS.

We have discovered at times that this is because everybody in the chains of command are not always even informed of his limitations or his diagnoses. As a parent, I have had to become his advocate, sometimes the only one he has had. Even so, as his parents, we will continue to learn about his limitations, continue to help him do what he can to improve his conditions, and we will continue to be his advocates, even if we are the only advocates he has. We will continue to fight to educate the educators, the administration, the counselors, and whoever else it takes to get our child the best education possible for him.

As parents, we have to educate ourselves on the syndrome, to prepare us for his problems and to educate others who are supposed to be helping him, so that they can also know how to help him.

The most ironic thing about Shawn's story is that, on January 17, 1983, one year to the day before Shawn was born, I was in a horrible accident while a passenger in a van. I had a severe closed head injury. The only thing I broke was my nose. I was in and out of a coma for three days. At that time, the ambulance took me to the smallest hospital in the city. They gave me pain medication and watched me. The night of the accident, they called my next of kin, because I was not expected to live. Back then, they had very little knowledge of how to treat head injuries. There was almost no knowledge of how to deal with the after-effects of a brain injury. I was labeled with various psychiatric diagnoses for years, until 1992. Over nine years after my head injury, I saw a psychiatrist who was doing a research project on head injuries and traumatic brain injury syndrome. His name was Dr. Gaylord Nordine of Des Moines, Iowa.

I had persistent headaches, memory deficits, word-finding difficulties, depression symptoms, a multitude of other side effects from my head injury. He took me off a multitude of psychiatric medications, and I became one of Dr. Nordine's research subjects. Batteries of tests were done on me. He pulled records from past testing from my high school and grade school days. He sent away for medical records and psychological testing that had been done on me as early as age 17. These records were what he referred to as my "Whiz Kid" records. I had been a novelty to the rural school system and had been tested beyond belief because of my high IQ and grade point average as a student.

For nine years, I had somehow been misdiagnosed by a multitude of psychiatrists because of a few reasons. I also have a very high IQ, therefore, what IQ points I lost in the areas of memory were less noticeable (as is the case with my son, Shawn). Also, very little was known about TBIS/ABIS at that point in time. Third, psychology and psychiatry were considered "alternative medicine" at that point in time. The common theory then was that any problem was either physical or mental, but never both. A holistic approach to medicine teaches that all health problems are interlinked.  Physical conditions can cause emotional problems and emotional conditions can cause physical problems.