As a young boy, my son was like many other boys his age; goofy, fearless, and forgetful. I was often convinced he had absolutely no common sense! He was always full of energy, attacked things head-on and to this day, is one of the funniest people I know. He also tried many sports before he found the one he could commit to - swimming. It certainly helped that his older sister was into swimming, as she is someone he looks up to. Swimming is a great sport with a team atmosphere, structure, and a perfect outlet for all the energy that he seemed to have endless amounts of.
It didn't take long for him to figure out that to succeed, he needed to be focused. There was a period where he would miss a race, or forget his suit and from a dad's perspective, it was a great outlet to reign in this crazy kid. As an ex-swimmer, I was excited to watch him and his sister in the pool. Things couldn't be better. My son found a sport, he was surrounded by a great group ofkids and to top it all off, he was excelling in the pool. His successes, like most athletes, came from a tremendous amount of hard work, sacrifice, and great coaching. Slowly but surely, he was beginning to become a pretty good distance swimmer.
In 10th grade, he was at a swim meet trying to qualify for his first YMCA National meet. It was in this meet that, I believe, we saw the first significant signs of his Narcolepsy/Cataplexy. He was half way through the 500 yard freestyle, and looking great when we started to notice something was wrong. His race quickly began to fall apart. He finished the race, but had to be pulled from the pool. He was in a state of confusion, not able to speak, and exhausted beyond anything I had seen. There was actually a concern that he may of had a stroke. For the next 3 days, he underwent tests at Children's Hospital in Philadelphia but in the end, there was no diagnosis. A team of doctors agreed that something happened, but they couldn't tell us what or why. The only advice they gave us was if it happened again, we need get him to a hospital as close to the event as possible.
This was the beginning of our journey - his journey. There were other events outside of the pool, but we either weren't aware of them or dismissed them as something else. In spite of several more events in the pool, more trips to the hospital, and no diagnosis, he continued to excel in the pool. His achievements in the pool and the classroom earned him the right to go to one of the best academic colleges, and to swim at the Division 1 level.
During his college years is when his disorder really began to manifest itself. He kept much of the struggle he was having to himself. In his junior year, things came to a head and we finally had a diagnosis. We really didn't know much about Narcolepsy or Cataplexy. It was a period of mixed emotions. We were grateful that we finally knew what was causing his health issues, but at the same time, there was so much uncertainly. We were told there are drugs that could help, but there were no guarantees.
My son was prescribed two drugs. One is to help with wakefulness during the day, and the other is the one that truly puts him to sleep. The sleep drug is the one that a lot of narcoleptics can't take. It takes months to titrate up to the needed dosage, and the physical side effects are extremely challenging. For my son it was part luck, but mostly perseverance that eventually enabled him to acclimate to both drugs.
The improvements in his life have been very positive, but these improvements come at a cost. His narcolepsy going undetected for so long definitely took a toll on his grades. It was amazing how much better he did academically, after acclimating to the medicine. Narcolepsy also brought his collegiate swimming career to an early end. The side effects of the drugs during his senior year did not allow him to train and compete at a Division 1 level. His body was still trying to figure things out, and just keeping weight on was a problem.
To wrap things up, this has definitely been a journey for my son and for our family. You can certainly look back and say I wish I had done this or that differently, but that is not how my son operates. I am so proud of him and how he has taken his fight with narcolepsy head on. He refuses to let the disease define who he is, or what he can accomplish. A testament to this is the photo I've included of him summiting Mount Adams, the second highest mountain in the state of Washington. While he can still be goofy and can certainly make me laugh at a moments notice, he is also an incredible young man. I love him beyond what I can articulate in words!