Sept 20

Today is our fundraiser Shark Tournament all proceeds go for research for CMT. Great time spent with fellow CMTers and friends to support our cause for a cure.

My CMT Journey continues..... On one of our visits to the Shriners, Joel shared with me how some of the kids at school and church were teasing him. It broke my heart to see Joel getting teased with being different. I thought if I surrounded my son around positive people then he would have a healthy environment to grow in. He continued to ask how come he has to have this disease. I tried to explain about the power of prayer and we will continue to pray for God to heal or allow a cure to be found. My son's heart was heavy. The appointment was non eventful. I tried to be upbeat and say where do you want to go for lunch? Sometimes we stopped at the mall in Bradenton. I never was one to like shopping, but my son loved it. On the way out of the hospital, my mind was focused on trying to bring comfort to my son. “Lord”, I prayed, “I need help here.” A woman was wheeling in a little boy about 2 years old in a wagon. He had casts on both his legs. When we got into the car my son said, “Mom what we have isn't that bad, lets pray for God to heal that little boy in the wagon and others like him”. So that is what we did. Of course as a mom I immediately filled up with tears. I whispered a little “Thank you, Lord”. I remember Joel finding a pair of Leg Braces in my closet. He said, “Mom, how come you never wear these?” What could I say, here I'm trying to encourage my son to try different things and see if it would improve his life and yet I wasn't doing it. He said, I think you should wear these. So I started to. At first it felt like I was wearing stilts. There hot and uncomfortable. But I had to be a role model for my son right? I remember when my dad passed away we found a pair of AFO's in his closet. Guess he didn't like them either, as he never wore his. Eventually I got used to wearing my braces. In order to prevent tripping I always walked with my head down so I could see where I was walking. The muscles to lift up my foot were already atrophied. But with the AFO's my foot was lifted up and I was able to look straight ahead. I went to a park and walked. It was wonderful to see a beautiful world around me. “Foot and ankle muscle weakness is the single most debilitating problem with CMT. AFO's are used in reducing foot drop.” (Lower Extremity Review Drop foot fix for CMT). Several years later, in Sept 2000, I got re-married to my husband Doug. I can't wear heals and trying to find shoes to wear with leg braces and be fashionable was quite the challenge, A friend from church made me beautiful wedding sneakers for me to wear on my wedding day. I walked down the aisle with my head held high and saw all my beautiful guests. Didn't even worry about tripping. The only time I looked down was to pray. 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 age 13

Doug and I

wedding shoes