Lot of emotions today as I attended Cody’s celebration of life. To be honest, I don’t even like saying how rough it was on me because I didn’t know him very well and today I saw his family and friends deeply missing him. They have known him his whole life or for many years…
And there I sat, overwhelmed with so many feelings. Sad as I looked around seeing all of those he touched, crying. Sad I was at a funeral for a 23 year old. Angry that it was fibrosing mediastinitis that ended his young life. Scared as I looked at a display about FM…and in that display was the FM shirt I had given him when we first met. More fear as I listened to them point out that there were five of us in Iowa with FM…and now only four. The harsh reality of what this disease is capable of.
Guilt was the worst feeling to shake off as I listened to them continue to talk about the “monster” as the cause of his death…the same disease I have but I’m still here while a mother just lost her child. Why Cody? He battled this disease for four years while I’m going on 14 years of fighting! I came to show my support but wondered if maybe I shouldn’t have come. But I’m glad I did because I got to hear so many wonderful things about Cody.
Tim and I were able to sit in front of Martin and his little girls, who were so precious and again my heart just ached. Martin has FM too and then Dr. Thomas was by us as well…one of Cody’s doctors that had helped with his last procedure. Martin and I began talking with Dr. Thomas and it was very apparent how frustrating this disease was to the doctor as well.
While I had not yet met Dr. Thomas, he knew who I was. He had also met Martin in the past. He went on to say that he has been communicating with our other doctors as they are all eager to try options that might help us.
Cody’s mother has been such a huge advocate for fibrosing mediastinitis and Cody underwent so many procedures in the short years he fought this disease. I honestly believe that Cody will be a big part in finding a cure for FM.
So, thank you Cody for putting up such a good fight and all while encouraging others along the way. I’m sorry your life was cut so short and while I am sorry that our rare disease is what brought us together, I am honored to have met you! You will be missed and you touched so many lives, more than you will ever know!
Prayers continue to go out to Sharon and her family throughout this difficult time.