My Promise
Many of you know my journey with Amanda and many might be new to it. On June 21&22 I will be cycling 200 miles in my 9thTrek. In 2014 my path was crossed by an incredible woman Amanda Bernier a 29-year-old with ALS who had just delivered her first child. Just weeks after finding out the joy of being pregnant with her first child she received a devastating diagnosis of ALS. She had a very aggressive form of ALS, that combined with pregnancy accelerated her progression. By the sixth month of her pregnancy, she was left with only head and neck movement and on a trach. Amanda knew the ugly of ALS, her Grandmother and Mother both passed away from ALS. She once shared with me she wouldn’t have gone through drastic measures to sustain life (trach) but she needed to do whatever she could to bring a healthy full-term baby into this world. That she did. In the fall of 2014, Arabella was born and that is when I met Amanda. As a physical therapist, I was assigned to her case when she came home after delivering Arabella. She began as a patient but quickly became a friend. I remember the first time I met Amanda. I admit I was nervous, very nervous. That is not usually me, however, there were circumstances with this case I just didn’t think I could emotionally handle. The first time I walked into Chris and Amanda’s home, Amanda turned her head, gave this great big, beautiful smile, and mouthed “thank you for coming”. An immediate calm came over me. She was so grateful for anyone in her home and even though she could only communicate through an eye gazing device she was always the first to say how are YOU doing and how was YOUR day? A demonstration of her true character. While Arabella got to hug Amanda, lie on her bed, play with her tubes, and give the occasional eye poke while helping to comb Amanda’s hair; Amanda never got to hug Arabella with her own voluntary arm strength, someone would have to place Arabella to Amanda and then her arms around Arabella. She never got to speak to her with her own voice, a simple I love you! Everything was said through a computer with which Amanda communicated by typing with her eyes. In the beginning, she was able to give her kisses and beautiful smiles as she still had facial and head movements, but that was soon lost. Amanda was freed of ALS in September 2016 as God guided her to Heaven. Anyone who even knew of Amanda lost someone special that day. Amanda introduced me to the Trek in conversation one day. Immediately I told her I wanted to participate. What she didn’t know is that fundraising is incredibly uncomfortable for me. I can ride miles and miles and miles…but asking for money, fundraising, that is WAY outside of my comfort zone. But ALS is a diagnosis that even as you are trying to help you feel completely HELPLESS! THIS was my way to help. Amanda shared with me one day that her mother once told her she would not have to worry about ALS by the time it could affect her, if indeed she carried the gene. “They will just give you a shot and you will be fine.” That did not happen, but I made a promise to do everything I could to help make that statement a reality for Arabella. Anyone who knows me knows I do not make promises easily, actually almost never, a promise holds a special place. While Amanda knew it was too late for her, all she wanted was to know that Arabella would be ok (Arabella has a 50% chance of developing ALS), so I made the promise to do what small part that I could. Arabella is now 10 years old, a beautiful and thriving little girl. I can just see Amanda’s smile and glow as she watches over her little girl each day.Why do I roll over every Ironman finish line? Jon Blais was a man with ALS who was the first person to complete the Ironman world championships with ALS. He rolled over the finish line, he was gone the following year and his roll became known as the Blazeman roll. I roll for Amanda and all with ALS, I roll so people ask me why and then I can tell the story, raise awareness. My first few years of the trek I rode with a team, but that team slowly dwindled down until I was the only one left. I have rode solo for many years now. This year I will be part of a team again. Team Often Awesome. Last year I was randomly put with a roommate Sara, whose friend Rachel is the captain of team Often Awesome. She lost her brother to ALS and she carries the gene. She selflessly has enrolled herself in a trial at ALS TDI, however since last years trek she has now been diagnosed with ALS and with such bravery has shared her story. As life continues on with many valleys and hard work for the peaks, myself and many of us are able to put in this work. Amanda never had the chance. Stricken with a brutal disease that is currently still a death sentence. I appreciate any and all support whether through donation or sharing of this post to help me raise awareness and continue the work these scientists are dedicated to in finding a cure and/or treatment. A sincere thank you to so many for all your support.
