Sean's Story

On August 10th, 2004, around 11:00 a.m., my son, Sean Michael Harris called me at work and said "Dad, where are you? I don't feel very well." Knowing my son, I instantly knew something was very wrong. I called my wife, Teresa, who went home from work to take him to the doctor. Little did we know this simple phone call would change our lives forever!

Teresa took Sean to the doctor that afternoon. While she was signing him in at the receptionist desk, a terrible thing happened to Sean. He had gone to the restroom where he suddenly went into a full Grand Mal seizure, the worst seizure you can have. Teresa ran to the bathroom and opened the door to the horrific sight of her son flopping in the floor, eyes rolled back, foaming at the mouth, oblivious to his surroundings. This scene will be forever etched in the mind of a scared mother who, for the first time, realized how sick her son really was. This was no cold or ear infection, it was something much worse. Teresa called me, full of emotion and uncontrollable fear. "We are on our way to the hospital,” she said. “Meet us at the emergency room and it is bad, real bad!"

It had been close to an hour since Sean's first seizure when they arrived at the hospital. I met my family at the back of the ambulance. Teresa was still in tears. Sean was awake, but in a daze. One of the paramedics asked Sean, "Do you know who that is?" Sean looked at me and nodded his head yes, "that's my dad." I felt scared, yet relieved that he knew me. “He is going to be OK,” I thought. “We are at the hospital and everything is going to be fine.”

Sean was wheeled into the emergency room where he slowly came back to us. He was hungry and cold. He asked us to call everyone we knew to let them know he was in the hospital. Little did we know, God would give us an hour with our son and we would never talk to him again.

We packed Sean under a stack of warm blankets, but he remained cold. He was now talking more normally, begging for food or water, which we could not give him. We do thank God for that hour. In that hour, we told Sean how much we loved him, and we assured him he was going to be OK. Mom and Dad were with him; he would not be alone. Our parents came to the hospital and they also got to spend some time with Sean and speak to him. We were all feeling good. He was going to be just fine. It was probably just a bad ear infection.

Around 1:30 p.m., the doctors wanted to do a CT scan to see if he had any injuries from hitting his head in the bathroom at the doctor’s office. Teresa, myself, and a nurse’s aid wheeled Sean down the hallway to the CT scan room. Sean was doing great. Then, when he stood up to get out of the wheelchair and onto the table for the CT scan, he had his second seizure. I caught him as he fell toward the floor. I was holding my son as his body violently shook, his eyes rolled back, foam came from his mouth, and he was in terrible trouble. The nurse's aid went screaming out the door to get help, leaving my wife and me alone with the worst experience of our entire life. I will never forget the helpless feelings, the inability to help our only child.

Sean was never the same. He did wake up about 20 minutes later, but he was in a daze. I am not sure he ever knew us from that point. We would soon realize that our suffering as parents was just beginning.

We had to hold Sean down as the medical team performed several spinal taps. They did NOT give him anything for the pain, and it took seven of us to hold our wonderful son down. Then came the insulting questions they have to ask. “Does your son take drugs?” NO! He is a great kid. Sean is an honor student. He plays in the band and is the center on his basketball team. He is a handsome dusty-blond-haired-and-blue-eyed-boy that all the girls love. The world is just waiting for him! Sean is Mr. Personality. He loves to tell jokes. He always has a smile on his face from ear to ear, and NO he does not do drugs!!

We watched as they tied our son down, watched his torment, watched him not understanding why all these people were being mean to him. He fought so hard. He kept saying "they're going to kill me!" It seemed the blood test and other tests went on for hours. Yes, they confirmed they found no drugs in his system. However, they couldn't find anything else wrong with Sean either. His labs looked OK, no traumas to his head, and they were sending him upstairs to ICU for observation.

We thought the worst was behind us, but it was only the beginning. Sean was wired when they let us go into the ICU. He had ten IV's that would eventually grow to 17. He had monitors everywhere and he was unconscious from medication. Teresa took one of Sean's hands and I took the other and we slept in chairs beside his bed until around 5:00 a.m. We woke up to see our son in another violent seizure. We screamed for the nurses who rushed in and, to our horror, we heard the words, "He's not breathing!!" I watched as they resuscitated our son. I was sick to my stomach, about to pass out when someone handed me a wet washcloth. I remember Teresa at the end of Sean's bed crying out, “Please don't die! Oh God, please don't let our son die!!" Sean was placed on life support that night. It was August 11th and our journey was just beginning. We had 114 days to go in ICU.

One hundred and fifteen days in a Pediatric Intensive Care Unit is the worst possible thing any parent can live through. It is a sickening roller coaster ride. You have days of sadness, despair and anger, but most of all you cling to those days of hope. You pray for a miracle. You can't understand, "Why is this happening?” That is something we still do not have an answer for today. We watched our son fight so very, very hard to live. He beat pneumonia several times, staph infections, fluid in his lungs, and infections in his body cavity. We were told several times how strong he was. They had never had a patient live as long as he had. Yet, the seizures remained. We moved him to the best regional medical center on the East coast. He was seen by 25 neurologists and dozens of other specialists and the results always came back the same - negative. They tested him for everything two and three times, yet nothing showed up. From what they could see, he should not have been lying in bed having seizures. The best theory was that Sean had some type of virus that caused his brain to have seizures, and from that, his brain had taught itself to have seizures. Sean's own brain was destroying itself. He had beaten the virus, but the doctors couldn't stop the seizures.
For Teresa and me, everyday was like the one before: 12 to 24 hours a day in the hospital, depending on Sean’s condition, and at the same time, watching other kids suffer through terrible diseases like cancer and yes, we watched them die. I often wondered how I would react when it was our turn.

Along the way we made a discovery – there are a lot of good people in this world. We always knew we had our family, but we didn't realize what a network of friends we had. We had 1,000 middle school kids and teachers and a small town of 5,000 behind us. We were 300 miles from our small town, but they were with us. The hundreds of emails, cards, CD's, banners, and posters we received brought us inspiration daily from around the world. I do mean around the world - Australia, Canada, the United Kingdom and from most of the United States. Sean's story was reaching parents and kids all over because of the "Why?" It could happen to anyone.

Why? Someday we are going to ask God that question. We know He has a plan for us all and it is His will that will be done. You see, when this started with Sean, we had stopped going to church. We thought we were good people. Teresa and I had been baptized, Teresa worked for years in a Bible bookstore, I grew up in the church, yet we had lost our way. Everyday at the hospital we prayed. Everyday we talked to God. One day I was holding Sean's hand and praying to God for help when I heard a booming voice, "Do you need someone to talk to?" I turned to see the hospital pastor. He quickly said, "Nobody has sent me, I go where God tells me to go." I said, "Yes, I need your help." We talked and we prayed. Over the next three months we talked and prayed together daily. Sean's illness had brought us back to God. Richard Freeman is the Pastor. Thank God he was sent to us. He is the one who taught us to "STAND TALL!"

STAND TALL!
One morning, things with Sean were really bad. Teresa and I were very upset and, as usual when we needed someone to be there for us, God delivered and here came Richard. He asked us, "How are you doing?"

We answered, "We're hanging in there!"

"Why do you say that?" he asked.

"Because our son has taken a turn for the worse. We must not have enough faith!"

Richard looked at us and said, "You have more faith than most anyone that comes through here. You are here everyday. You are here all day. You pray, you go to the chapel – my friends, that is faith. You are Standing Tall for Jesus! You see, when we are just ‘hanging in there,’ we are afraid of falling. We are like those kids on the monkey bars that are barely hanging on. If we let go, we are going to fall and we might get hurt. You do not need to worry about falling because God is with you. You ARE Standing Tall for him!”

Standing Tall is what we have been doing since that day in October. We helped others who needed help. We gave toys and balloons to kids who had no parents to come and see them. We talked to the parents of kids who were going to die or had just passed away. We did as much as we could to Stand Tall for others, knowing it would be our turn some day.

Our turn came on December 2nd, 2004. We had asked the doctors to take some of Sean's medications away so Sean could wake up and we could see if what they told us was true. We had been told Sean's brain was "gone." He would be a "vegetable." Sean wasn't even halfway off one of the seizure medications when he had 67 seizures in a 24-hour period. It was clear to us what we had to do. It was our turn to make that terrible decision, to take our only child off the respirator. Along with it went all his hopes and dreams. At the young age of 14, we knew what he had wanted in life and he had such a bright future. He wanted to be his class president. He had plans for college and he was going to fly planes or be a famous magician. He used to sign his name and give it to the other kids saying, "I'm going to be famous someday." Now, we had to let him go. Our future, too, was shattered. We would never be grandparents. We would not see him fulfill his dreams. Why?! We took all of Sean's balloons down and gave them to the kids who did not have any and we waited as carbon monoxide slowly increased in his system.

This was my Journal Entry from December 3rd:

12:30 a.m. Sean is dying. If God is going to step in and give us a miracle, it's now or never. He does send some wonderful people that we had been witnessing to, to our bedside. Ten people whose own child is dying from cancer come and pray with us until 1:00 a.m. in the morning.

1:00 a.m. Richard Freeman shows up and we all pray together, except now we are praying for God to take our beloved child home with Him and to be kind and merciful, to not let our son suffer anymore. The doctors tell us it could take days for him to pass, but that is not God’s will. He had used our son enough.

1:15 a.m. Sean takes a deep breath, 30 seconds later he takes his last. Teresa and I never leave his side; we hold our beautiful son until the very end. We cry. His life on Earth is over now. Why?!

The earthly chapter in our son's life is now over, but we have faith and believe a new and better chapter in our son's life is just beginning. We "Stand Tall" that someday we will be together again! We pray for all those who are facing worldly problems, anguishes, and sickness. Remember, this life is brief. Do not take your kids, your family, or your God for granted. We may never know why in this lifetime, but if we live our life for God maybe someday we will get the answer we desire. Until then, we will Stand Tall for Sean!

Always Stand Tall,

Chris, Teresa and Angel Sean