My dad was diagnosed with ALS in 1998 when I was six-years-old. My strongest memories are from when he was sick, but I’ve learned great stories through family and friends. My dad was the life of the party; handsome, stylish, athletic, always smiling. I gotta admit, I love when people say they see him in me… I mean, it’s a total compliment haha! I was only 13 when he passed away, but we squeezed many happy memories into those years and I know I’m the person I am today because of him.
My dad was a great coach. My main sport growing up was competitive cheerleading and while he didn’t coach my team I was lucky to have his guidance and advice. The sport required a lot of travel to competitions. Looking back I’m not sure how my mom and dad pulled it off. They are both superheroes. Road trips, airport security, flights, hotels… all so much more challenging with an electric wheelchair and ALS. My parents were thoughtful and extended many of those trips into family vacations. I think they knew the years were limited and wanted my sister and I to have those experiences while he was with us.
Part of me feels lucky I was a naïve adolescent when my dad was sick. I didn’t fully understand his prognosis. But, lucky isn’t the right word. Just because I was young it was still grueling. No kid should be growing stronger while watching a parent get weaker. It’s not fair and I do not want any more families to be affected. We need a cure.
A month before my dad died he wrote me a letter I will cherish forever. In the fall of eighth grade we were assigned a time capsule project. We wrote a letter to our twelfth grade self and gathered letters from friends and family that would be sealed and remain in a vault until senior year of high school. After he passed I thought about his letter every day. He typed it on his laptop with a switch wedged between his thigh and chair. Thank goodness technology has advanced since 2005. His final sentence read in part, “I am so proud of you for so many things. I hope that during your high school years you took advantage of every opportunity to better yourself for your college years. Have fun and keep making me proud. I love you, dad.”