Below, I am attaching a blog written by Sharon. She has been a huge advocate for her son Cody who has FM, as well as an advocate for all of us who are battling this disease. Her blog was hard for me to read because the frustration, the anger, the sadness she expresses…I have felt…but only as someone fighting this disease…not as a mother having to watch her child, no matter what age, dealing with something so horrible.
With that being said, I just want my parents to know that I love them for all of their support over the years, for all of their faith, for their love and for their courage as they continue to watch me have good days and bad days of dealing with this nasty disease! Having a rare disease comes with tremendous barriers and like Sharon says, with less than only 1% diagnosed with FM, nobody really cares about research.
Every time I read Sharon’s posts I cry because I could not imagine having to watch any of my children go through something like this, being thankful that I have this and not my kids…and then it dawns on me…my own mother is in Sharon’s position so I know my mom can relate to what Sharon might say. Please keep Cody and his mom in your prayers. And to my mom and all of you other moms who have been in similar situations of having to watch your kids whether younger or older endure so much, you are all strong and amazing moms…and truly appreciated by us kids!
Love you mom 🙂
Last night while Cody & I were helping my brother (Cody’s uncle) who was diagnosed last year with stage 4 esophageal cancer get his house ready for our family’s visit this month opened my eyes even more about this God forsaken disease. Cody & I were moving a dresser from the basement up the stairs to the main floor. When we got to the top of the stairs this beast reminded me of what it could do to my son. Something that a “normal” person could tolerate took its toll on my …son. I could see he was struggling with his breathing & you could hear the wheezing come from his chest as he was trying to catch his breath. I told him to go sit down & I will take care of the dresser. These are the days that makes me think it could be the last. I get so angry. And I can see the frustration in Cody’s eyes because he wants to do things but his body tells him “no”. I hate this disease. And I hate that no one is doing anything about it. I guess the only way this would get any attention is if it affected thousands or millions of people then the government would be working 24/7 to find a cure. But since it only affects less than 1% of the population no one bats an eye. Try telling that to my son as to why there is no cure or treatment for this disease. Look him in the eye & tell him that his life means nothing to you. I dare you!!!!!
Faith, Family, Cows, Fibrosing Mediastinitis #mylife 
You will never know the nights I would lie awake bargaining with God. Anything to take away the pain and illness and wished I could put it on myself. That’s just what moms do. Sharon is my “sister” in this! We stay strong for our kids even when we are weak. I would take away your FM in a heartbeat if I could but I also have seen your faith grow in ways I never could have imagined! Love you!!
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