Our daily encounters don’t happen by chance. This may sound cliché, but there is a reason for your circumstances and the people you meet because of them. The people who cross our paths were meant to do so. I am of the mindset that there is a specific purpose or lesson for each encounter- whether we realize it or not.
My path recently came alongside a woman named Shannon. What is interesting about Shannon is that she lives more than 600 miles away, in a state that I had never been too. However, thanks to social media, I would now call her one of my new best friends. Although I think she would agree with me when I say, I wish we could have met under different circumstances.
When her son’s aide sent her my first blog post, she quickly realized that she and I had something big in common… Our boys both have a Peroxisomal Biogenesis Disorder (PBD). She also realized that Kevin and I probably did not know anyone else who was going through this… and boy was she right.
Shannon is probably one of the coolest people I have ever met. She is president of the Global Foundation for Peroxisomal Disorders (GFPD). She started this foundation for many reasons, but the main reason is because she has a son named Sam who was born with a PBD. And if I’m being honest, meeting them is the real reason we recently visited Omaha.
Meeting her son, Sam, was the highlight of our trip. It brings me an incredible amount of joy to tell you that Sam is now 11 years old! When we first found out about Gideon’s diagnosis, we were under the impression that not many of these children diagnosed with PBD live to see their first birthday. And while that’s true for the most severe cases, there are others who make it to school age.
Sam is a handsome boy who has been through so much. As if having a PBD was not bad enough, Sam also had a fight with cancer around age seven. After that, Sam has required the use of a wheelchair and because of PBD, Sam has a cochlear implant. It was very heartwarming to watch Sam laugh upon hearing Gideon babble and squeal. It’s interesting how their laughs sound exactly the same. Sam loves mac and cheese and his older sister Taylor (who, like Laynie, is unaffected). And although Sam does not speak now, his eyes and smile would melt your heart.
Shannon was able to answer more of our questions than all the doctors we have seen in the past 8 months combined! She showed me pictures of Sam walking and swimming before his cancer; and in doing so, she gave me a new gift of hope for Gideon. I honestly thought my little boy would not live past a year, and now someone has shown me there is hope that he will not only live past a year; but that he will probably be able to walk, learn, and even swim someday!
And Sam is not the only PBD case that is encouraging. There are many other children living with this awful disorder. It’s heartbreaking to think that PBD claims their lives so young, yet I am amazed by what some of these children are able to accomplish in the short time they are given.
As we were driving home from our visit to Nebraska, I thought a lot about Sam and his family. If not for our circumstances with PBD, our meeting with them would never have taken place. This dreadful disorder has led us to a delightful encounter with this dear family. Hearing their story was encouraging and it gave us a refreshing optimism regarding our own situation. I’m encouraged because there’s hope that my little boy will live longer and do more than I once thought.
Thank you Shannon, Rich, Taylor and Sam. Thank you for showing us that life is still beautiful even when times are tough. We are beyond grateful that we have encountered your family even though it was our unfortunate circumstances that brought us together.
I can’t help but wonder just how many lives our boys are changing as they have encounters of their own.
