I have spent the last day reflecting on my time in Michigan, trying to collect my thoughts and trying to come up with the words that could describe the last several days. I thought that it would come easily, but I am finding that I am more overwhelmed than I had anticipated.
If you do not know her story, Aubrey Joy Oberlin was born on October 6, 2010. They noticed right away that Aubrey was missing skin on her left foot and that she had small blisters on various parts of her body. She was airlifted to University of Michigan Mott’s Children’s Hospital and on November 1st was given the diagnosis of Junctional Epidermolysis Bullosa -Herlitz. It is one of the most severe and often fatal forms of Epidermolysis Bullosa. This meant that EB was not only causing blistering on the outside, it was slowly affecting her body on the inside. After six weeks, on November 17, 2010, sweet little Aubrey lost her battle with EB.
Although she was only here for a short time, she impacted the lives of so many and created purpose in the lives of some some very special people. People like my beautiful friend Andrea Ness, who is so dedicated to the EB community and does many things in Aubrey’s memory. Andrea was instrumental in the coordinating of Aubrey’s 5K, and it was such a privilege to be able to be there to support her, Aubrey’s parents and the rest of the planning committee.
It was such a beautiful morning…the sun was shining so brightly warming us from the crisp air. It was amazing to watch as everything came together…this small community coming together for this special little girl, it was such a beautiful thing!
I am not a seasoned runner by any means, but I have a few under my belt now and yet I was so unprepared for how I would be affected by this race. It will be one of those that is added to the list of moments that have had a profound impact…very profound.
Let me start by saying that I have never run without my iPod…I depend upon it to help me pace myself and to assist me in NOT focusing on the time. Simply put, it makes the time go by faster and I am far more motivated when I have it. Shortly before the race, I discovered that despite being plugged in all night, my trusty friend was out of power. How that could possibly be was beyond me. What was I going to do, the race was just about to start…
Since I did not have any music, what could I do? Well, I decided it was a good time to pray. I thought about Aubrey and all of the other angels like Lucas, Quinn, Bella and Tripp. I thought about their lives and what they meant, how their footprints have left such a lasting mark on me and the rest of the world. As hard as I tired, I could not keep the emotions from creeping up on me. I kept replaying Aubrey’s video in my head…
As I reached the end of the race I discovered that there was a reason my iPod did not work. You see if I had been listening to my iPod, I would have never heard Aubrey’s song as I turned the corner to go pass the cemetery. I would have never experienced that profound feeling that came over me as I listened to the words and felt her presence there. Fighting back the tears was completely useless…I totally let the emotion take over as I thought about that fragile little life and all of the other precious angels. I thought about their pain and about all that they endured during their lives. Then I ran hard…my determination took over. My motivation was strengthened and my passion deepened. The journey has only just begun, we have so much work that needs to be done and it is up to us to fight this fight and be a voice.
I am grateful to Angie and Dave for sharing Aubrey’s story and allowing us to fall in love with her and honor her in all that we do in the fight against EB. Her suffering will not be in vain, for she will continue to touch hearts and spark passion in many. Her story will bring awareness and help lead us to a cure.
This weekend was such a blessing and I am so grateful to have been a part of it…once again I have been touched by an angel.
This week marks the beginning of EB awareness week and I encourage everyone to try to tell at least one person what EB is. Do what you can to bring awareness to your community…you could be the one…