Pain and Perspective – Tyler’s Health Scare

A few years ago, I worked with a guy named Tom, whom I greatly admired. He was an older guy, and he was perpetually calm. Tom was responsible for a lot, yet regardless of the challenge, issue or “crisis” at hand, I never once saw him get even remotely flustered. While the rest of us ran around, stressed out, screaming about this, that or the other, Tom would remain calm, seemingly oblivious to the chaos. Incidentally, in the 5 years that I worked with him, he never missed a deadline. As someone who tended more towards the “high strung” side of the fence, I was both fascinated and amazed by his ability to stay calm, cool and collected in the midst of all the pandemonium. Finally, I asked him his secret. His response both humbled, and changed me.

He said it boiled down to perspective. He wasn’t trying to downplay the importance of work, it was just that in his life he had faced far greater challenges. For several months of his life, Tom woke up every morning in the jungles of Vietnam fully expecting to die. He wasn’t being dramatic, he was just telling it like it was. As an infantryman, he and his platoon were on the front lines, constantly fighting for their survival. Almost every day, he was stuck in the middle of a jungle, half a world away from his wife, watching his friends get shot and killed, forced to deal with the reality of “kill or be killed”. He was 20.

I was blown away. I didn’t know what to say. For some reason, probably because I had never faced anything even remotely close to that, I felt small and petty. After a few moments of silence, Tom continued.

“Everyone has their Vietnam,” he said. “For a lot of people, it isn’t a matter of life and death, but for some it is. It’s all relative, but if you’re the one dealing with it, there isn’t anything more important in the world. Loss of a loved one, cancer, depression, addiction, war, we all have personal struggles that shape who we are and that help keep things in perspective for us. I guess that’s why I don’t really get too worked up at work. I’m just thankful to be alive.”

My “Vietnam” started on Father’s Day of 2008. A few days earlier, my son Tyler had started acting a little strange. Every once in a while, he would make a tense face, grab his stomach and make laughing/grunting noises. It only lasted 5 or 10 seconds, and then he would be fine. At the time, I didn’t think too much about it, after all, he was a 3 year old boy who was always acting a bit crazy.

But gradually, it got worse. By Father’s Day evening, his “episodes” were happening every few hours and he would seem tired, almost dazed and withdrawn for several minutes afterward. It was clear that something was very wrong.

I love being a dad, but I didn’t fully appreciate just how impactful my kids have been in my life until that night as we rushed to the emergency room. As Tyler’s episodes continued, I sat by his side trying desperately to comfort him. I could see the fear and confusion in his sweet little eyes and my heart broke. The fear, desperation and helplessness I felt in my soul was unlike anything I had ever felt before. More than anything in the world, I just wanted to hold him and protect him from whatever was hurting him. But I couldn’t. No matter how hard I squeezed, the episodes kept coming.

After what felt like an eternity, the doctor came in the examining room to see Tyler. Unlike the infamous car rattle that disappears as soon as you show up at the mechanic, Tyler had several episodes within the hour for the doctor to witness. The doctor thought he might be having seizures, so he ordered a CT Scan to test Tyler’s brain for trauma, aneurysm, bleeding on the brain and any indication of a brain tumor. I felt like my head was spinning. Seizures? Aneurysm? Brain tumor? In a matter of seconds, my precious son had gone from “acting a little weird every once in awhile” to “possibly having a brain tumor”.

Later that night, we received word that Tyler’s brain appeared to be “structurally intact” and that there didn’t appear to be any tumors. We were able to rule out some scary, life threatening things, but the reality was that we were no closer to understanding what was happening to our son. There was nothing more they could do in the emergency room, so as the seizures continued, we were sent home. I was worried that Tyler’s life would never be the same.

The following month was, without question, the worst month of my life. I rarely slept because I wanted to be there for him when he had a seizure. I didn’t want him to ever feel alone and scared. I still remember watching him sleep in his bed. He was so small and innocent. It didn’t seem fair. We saw specialist after specialist and Tyler endured countless tests. He gave blood no fewer than 10 times. He had several ultrasounds, two MRIs, two EEG tests, a spinal tap, you name it and the poor kid had it. He tried so hard to be brave, but he would inevitably break down and cry as we approached the hospital and it wasn’t hard to understand why. We were all scared.

Knowing that something was very wrong, but not being able to do anything about it was agonizing. The doctors were stumped. They tested for everything. The never ending cycle of testing and waiting for results was exhausting. I spent countless hours on the Internet researching everything the doctors were testing for. Without fail, what I found was devastating. Everything I read seemed to include – “requires brain surgery”, “life threatening”, “severely limited brain development”, or “often fatal”. There were so many times I just sat, completely overwhelmed, trying to wrap my head around what was happening. Always waiting. Staring at the phone and waiting. Needing it to ring, but terrified of what the call might bring. Test after test kept coming back negative, which was good news, but we still had no idea what was happening to Tyler.

As the weeks dragged on and we tried to return to a somewhat “normal routine”, I remember driving to work, and the weight of what my son was facing hit me. I broke down. I pulled over and just cried. I hated myself for every time I had been short with him, or didn’t have enough time to play with him because “daddy’s busy with work” or “daddy’s tired”. I felt like a horrible dad for missing his birthday party because of a “previous work commitment”.

After another MRI confirmed that Tyler would not require any brain surgery, we scheduled a 72 hour ambulatory EEG to try to capture his brain activity during a seizure.

More waiting. For me, the worst part of the waiting was the terrifying what-if scenarios that constantly raced through my mind. Finally, the call came.

Tyler was suffering from partial complex neurological seizures. He had epilepsy. The cause of the seizures was unknown, but it was confirmed that there was nothing structurally wrong with his brain. A lot is still unknown about the brain, but his neurologist was confident that we would be able to get Tyler on a medication program that would allow him to be seizure-free. We finally knew what we were up against.

Thankfully, Tyler has been seizure-free for 17 months now. He is a wonderful, happy, healthy kid who takes anti-seizure medication sprinkled in his yogurt “to keep his brain healthy”. He is doing well in school

and he loves playing sports. His epilepsy has not limited him.

As a family, we have been incredibly blessed throughout this trial. When I think back upon that month of my life – of what could have been had any of the other tests come back positive – I am overcome with sheer gratitude.

But Tyler’s epilepsy is always on my mind. Even when I’m not consciously thinking about it, I still feel it there. Whenever Andrea calls and is upset, my mind immediately races to his epilepsy and I brace for the bad news that he has had a seizure. Whenever he acts funny or has trouble concentrating, I worry that it is his epilepsy. His medication is working incredibly well, but I am still scared of what can happen if things get worse. Like any parent, I just want my kids to have the opportunity to have a healthy, fulfilling, happy life. I don’t want life to be any harder for them than it has to be.

I am somewhat embarrassed to even mention my experience in the same context as what Tom went through in Vietnam, but he is right. We all have challenges that shape our lives. Many have faced far worse than me, but spending a month of my life waiting to find out if I was going to lose my son or not was a matter of life and death for me. It changed my life. More than anything, it helped me realize what is truly important in my life. Occasionally, I still feel myself getting worked up or stressed out about something trivial, but it normally doesn’t last very long. I just think about Tyler, or Tom, or the fact that everyday, millions of people are facing unfathomable hardships and I thank God for my blessings.

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