As you go through life, you never truly know where life is going to take you or who you are going to meet. We all think we have a plan, but the second we begin to think we’ve got it figured out, life comes at you. The great Mike Tyson said it best, “Everyone has a plan until they get punched in the mouth.”
While we didn’t get punched in the mouth, we certainly didn’t plan on having a child with special needs. But one of the beautiful things about having a child with a special needs is you get to meet special people that understand you. You get to meet people that are going through the same roller coaster of emotions you are. And you get to see how different people are doing different things to express their emotions and how they are living a life with a child with a rare disorder.
One of those people is Bo Bigelow. Now let me be clear, I’ve never actually met Bo, but I feel like I have. That’s because I listen to a podcast every week that he puts out called Stronger Every Day. Bo has a daughter named Tess, who happens to share the same birthday as Hayden! Tess was born with rare disease known as Hao-Fountain Syndrome or USP-7. It also turns out that Hao-Fountain Syndrome was discovered by Christian Schaaf, the same guy who discovered Schaaf-Yang Syndrome.
His podcast is so meaningful to me because he talks about the challenges, and joys, of raising a child with a rare disease. Each week is another story that is very relatable. Even with close friends and family, it’s truly hard to describe the emotions of raising Hayden. I’m never hiding from the emotion or trying to shield friends and family from how difficult it is. It is just hard to truly explain what is going on inside my head as there are thousands of emotions and thoughts going on. Each week when I hear Bo tell a story, I can relate to him and his life with Tess. Sometimes I laugh, sometimes I cry, sometimes I sit in silence and just take it all in.
This is why I feel like I know Bo. Hopefully I actually get to meet him one day.
I sent a note to Bo to share this with him and to tell him to keep up the good work. I know I’m not the only one out there that gets a lot of value and a weekly therapy session from Bo. In return, he gave me a call out on one of his episodes – go listen to it here.
Bo and his wife also started a foundation called the Foundation for USP7 Related Diseases (https://www.usp7.org/). Go visit their website and support their research as well. Us rare disease folks need to stick together.
With love,
Matt
