Sept 21 My CMT Journey continues

My dad has a sister, my Aunt Stella, who is pushing ninety and CMT free. She has 2 sons, 2 grandsons, and 4 great grandchildren all CMT free. I have two sisters and one brother. As I stated earlier my sister, Patty, has CMT my other sister and brother do not. I have 3 nephews and a niece who are free of CMT. My niece's 3 children seem fine. I am so thankful that all my nephews and niece have been spared of this disease. Watching a child suffer and struggle is probably one of life's hardest times to let go. Having CMT myself is fine but my child having it is heart wrenching. I remember my mother saying she would take my disability on herself and see me and my sister live a life free from CMT. I am sure every parent wishes the same. My heart always goes out to parents who have children with life threatening diseases. The feeling of helplessness is so overwhelming when as a parent you can't fix whats going on in your child's life. In having a neuro muscular disease, I have tried to adapt to my abilities and make the best of things. Watching my son suffer is another issue. I kept Joel involved in sports like soccer, bowling, flag football, basketball and fishing. His CMT was not as active in the early years of sports. However, at the age of 13, when Joel signed up for basketball, it was becoming more difficult for him to run as the CMT was weakening his muscles. Running from one side of the court to the other was frustrating for him. I told him he didn't have to go back but he was persistent and stayed through the year. I know he always wanted to join a football team in high school. I would never consent to it and we would have arguments several times over my decision. Unbeknown to me Joel tried out for wrestling, but didn't make the team. I tried to encourage him to do things he can do and enjoy, like fishing. The fisherman blood runs in my family and in his dads. It can be difficult watching friends children excel in life, in sports, and in general favor in the job market. I have my moments in trying to understand why my son's life is so hard. “Seeing other children doing something that your child cannot do or cannot do without pain and difficulty can trigger long-hidden feelings of sadness”( cmtausa, MY Child Has CMT). Having a deep faith in the Lord is what has brought me through each difficult journey. I couldn't imagine how I could go through these times without His comfort and carrying me at my weakest moments. I get sad at times when I see Joel struggling. I'm reminded of the day when I cried out to God, when I learned Joel had CMT and that sweet voice whispered in my ear, “I made Joel for a very special reason.” I am so proud of who my son is becoming. Watching Joel put together the shark tournament we had yesterday and the passion he has for his family, I see what a beautiful soul he has. I know God is going to work through him to accomplish much To be continued. If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org/url/sharkchallenge or to the MDA http://www2.mda.org/goto/CMTChallenge

Joel Bowling

Family

Joel Fishing