Re: No one wants to talk about it.
Julie, My heart goes out to you, as the mother of a young man who has lived his life with dignity and fight, if prayer works for you in order to lift your grandson up, great. Miracles happen when God will's them. Our miracle is that my son is still alive, in body, mind AND spirit. No one wants to talk about it because they just don't know what to say about the elephant in the room. They SHOULD be helping you to plan his life with as much emphasis as someone without the disease. The struggles are day to day. I remember getting my son's diagnosis, I cried for exactly 15 minutes, that was when he was sick...I haven't shed a tear since because there was work to do! He is now entering a new stage of the "dragon" called DMD. He lives life with vigor, he is a college graduate, has had a fiance' for 2 years, and does what most 25 year olds do. He LIVES!
I'll pray that you and your grandson, not for a miracle of healing, but for the acceptance of the joy and gifts that he must negotiate. Peace, Jan