I think anything in this life can easily distract us from God or his will....we focus on material objects, our jobs, money etc. I often 'catch' myself running around feeling absorbed and distracted by life's worries and 'responsibilities'. DMD is just another one of those things that takes hold of our focus and causes us to lose sight of our devotion to God and his will. I too try to remind myself where my focus should be when I am obsessing with dr. appointments, PT, school issues, this site (lol) and everything else with DMD. I find that I get confused sometimes whether I am not putting my faith in God by taking on all the worry, but I have always felt that God will provide if we meet him half-way, so I go back to running around and obsessing again to almost 'show' God I am trying my hardest. Make any sense? I guess what I think is that it is not WHAT we are obsessing about or focusing on...but it is WHY. I try to ask myself, "Am I doing this for me or because I believe it is God's will for me?" So, maybe it IS God's will for us to focus on DMD? Maybe it's in his plan that we obsess about it so that we can not only change our own son's lives, but change the lives of others too. Let's be honest, there are thousands of people and parents with DMD that just accept this fate and do not focus on it, maybe we are the ones that are obsessing because it is in God's plan that we fight for them too. This is just the way I make sense of it. I think the true demon in DMD would be losing our faith.
On a personal note about you...I know that it is God's will for you to be a little more 'focused' on DMD than some other parents. When I first learned of Riley's diagnosis, I was so lost to say the least. My husband was questioning his faith and was very angry with God. I was searching like a crazed person to make sense of this and I felt a true dispair that I have never felt before...I had lost sight of God and his love for me a long time before this too. The first parent I had contact with was you. You were so positive and hopeful and when I hung up the phone I went on and on to my husband and family about all of the hope we now had. I felt like a weight had been lifted. You gave me (and all of my family) the hope we needed and although we were still aware of the reality, I knew I wasn't carrying this burden alone. When we hung up the phone I just kept saying to myself "Thank you God for sending her to me!" Now, I'm not a parent that will just sit and wait for my son to die like the doctors wanted me to. Now I have the power to make a difference in Riley's life AND you lead me to a place where I can do that with the support of others! My life and outlook on DMD completely changed the day I first talked with you. If that isn't the will of God, then I don't know what is!!
I know I am a little late in reading this post but I think it came at the right time. I, too, feel that I have let DMD become my idol. I have been so wrapped up in the care of my son and DMD that I have avoided God. I know God is my only hope. I read all the responses and have noted some of the advice and kind thoughts. Thank you all for posting on this subject. It is so good to have others to relate to.