I take this moment to reflect on Daegen Feyh. On January 25th, 2001, this beautiful boy was born. On July 17th, 2005 he died. Daegen was a beautiful boy who I followed towards the end of his illness. Because I walk with Friends of Allie, we had a team in Kansas that walked in his honor, that is how I was introduced to this sweet, beautiful boy. I remember when he died. I remember the post that read “another angel….Daegen aka: dman.” I remember reading and feeling so sad knowing the world had truly lost something special.
In November, at a meeting in Las Vegas with The Leukemia and Lymphoma Society I sat across Janelle and Lance Feyh. I wasn’t completely sure who they were, although I had a hunch. We went around the table and we all introduced ourselves and explained our roles with the LLS and our teams. There were approximately 17 people in the room, 8 of those being FOA team leaders. After we were done, the introduction went to Janelle and her husband Lance. I remember listening to Janelle say “my son Daegen passed away in July.” My body grew numb. I remember looking at Lance, he had a long necklace on with Daegen’s picture on it. I remember Lance looking down. I remember suddenly fighting the urge to cry, I felt ridiculous. I thought “I can’t cry. I have no right to cry.” I then noticed that almost every single person from my team was crying. Crying hard. It completely broke me. I know why we cried. For over a year, we had faced childhood cancer by reading stories, signing guestbooks, sending cards and raising money to help find a cure. But we NEVER truly faced the loss. And here we were, face to face. The reason why we volunteer was right in front of us. It was overwhelming and heartbreaking. It was real. I remember thinking “they are so strong. What is giving them strength?” I knew it was Daegen.
Tonight I went to my Friends of Allie board and saw a post that tomorrow was Daegen’s birthday. January 25th. A day I celebrate. It’s Anna’s birthday, too. My beautiful daughter will be three. I have always believed that children choose their parents. I have no doubt that Daegen chose Lance and Janelle. They have something on their website called “A Grieving Parent’s Wishlist.” PLEASE read this. I could barely get through it, but it’s worth it and it’s eye opening, and so honest. Daegen’s parents have started a National Friends & Family team with a first year goal of $500,000. I have no doubt this goal will be reached and that the Daegen Feyh Research Grant will no longer be a goal, but a reality.
So, on January 25th, Janelle, Lance and Daegen, I will be celebrating Daegen’s life and reflecting on the impact he has left, not only in life, but also in death. I remember telling Janelle, in Vegas that “every dollar we raise and every minute we spend fundraising is in Daegen’s honor.” This will always be true.
After we sing Happy Birthday toAriel, it is my hope thatAriel and Daegen will blow out the candles together.
All my best and all my love.
Hug your child extra tight, everyday.
