Sept 12 My CMT Journey continues...

My parents lived in Florida with my brother, Ed. My sister, Laura, also lived there with her husband and daughter, Christine. Patty married her husband, Ray, and the next year she gave birth to her son, Scott. Now my prayers included my nephew and my son to be spared of this disease. My niece, Christine, appeared to be fine as her mother does not have CMT. So now my prayers were centered on Scott and Joel. Both Patty and I lived close to each other in New York. Once again, we relied on each other for support as the rest of our family lived in Florida. Patty and I raised our sons together and we had lots of special times with them. Every night I prayer for God to spare our boys of CMT. I thought if I could find favor with God, He would hear my prayer and spare Joel and Scott, from having CMT. A good friend Maureen, introduced me to the Lord. I found a church, got baptized went to Bible study on Wednesday and church on Sunday. Became a Deaconess and visited the sick and home bound. I became the best little Christian I could be. I worked hard at my faith. I didn't understand the meaning of Grace. Grace is God's favor. It is a free gift, it is not something we earn or work for. CMT was causing some weakness again, especially in my hands and knees. I remember one frightening event that happened when Joel was only a few months old. I was standing on the steps outside of our home holding Joel and my knee popped out. I lost control, dropped my son on the cement steps, and I crumbled to the ground. I still have nightmares over that day. Thank God, He had His angels over Joel, and he only had a bump on his head. Carrying my son around was causing my hands and legs stress. I am forever grateful for disposable diapers. I don't know what I would of done if I had to use safety pins. My hands were getting to the point that buttoning shirts and picking up small objects was becoming extremely difficult. “Common symptoms of CMT, difficulty grasping and holding objects and opening jars and bottles” (Hereditary Neuropathy Foundation). I tried so hard to not take out my frustrations on my son who at the age of two and three would not sit still. Try dressing a child with closing buttons, zippers and tying shoes while they wiggle and squirm. I hated yelling. Oh how hard it was not to. I felt so guilty in loosing my patience with my son because of my CMT. To be continued.....If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or to the MDA http://www2.mda.org/goto/CMTChallenge 

Me and Joel

Patty and Scott

Patty with Joel and Scott