Some people say I have an unusually peaceful aura about me. I don’t know if that’s always true but I think I’ve always had a gift of courage. I believe I’ve had it so that I could deal with the challenges I’ve had to face in life.
Like my mother said earlier, I have Prader Willi Syndrome. Prader Willi is a genetic condition with a few different symptoms. But the main thing about Prader Willi is that you’re born without the signal that tells you when you’re full. So people with Prader Willi always feel hungry.
You might think Prader Willi is the biggest challenge I’ve faced in my life. But it’s not. Getting diagnosed with Prader Willi made my mom and me really happy! I wouldn’t say knowing made my life any simpler. But it explained a lot—like why I have small hands and feet and why I was always really good at puzzles. For the first time, there was a reason why aspects of my life seemed different. And it was a huge relief to know I wasn’t the only person who had gone through some of my issues. But Prader Willi has not been my biggest challenge in life. Growing up without my dad, moving a lot when I was a kid, and having a hard time in school were a lot tougher. That’s when I needed my courage.
I’ve always been drawn to people and places where the Love is big and easy to feel. The dance studio where I dance several times a week is like that. It’s a place where everyone is glad to see each other and where we’re free to be ourselves. It’s like there’s a Love in that place that’s bigger than all of us. But we are all a part of it if in our own ways. All I have to do is walk in the building and I feel it. West Concord Union Church and Sunday Fellowship are like that for me too. So are certain people. And so is Nature. They’re the places I know where I can always go to recharge my batteries and fill up on Love.
My best friend Madeleine was one of those people too. She drove a taxi service I used a lot and I would be with her most Sundays. Being with Madeleine always made me feel such love. But along the way, I found out she had ALS. It was very hard for me to admit she was going to die. But when I saw her getting the signs of ALS so rapidly, I had to face it. And that was a much bigger challenge than finding out I had Prader Willi.
My mom and my friends often say I’ve taught them a lot about how to “live in the now”. I guess that’s true because I don’t hold on to my problems. I know how to look for the people and the places where the Love is big and easy to feel. Thanks be to God.