Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 Hello, I cannot direct your to centers, but I heard the worries in your post. Every case of CMT is different. I wanted you to know that I had infant onset, late walker, weakness, etc. In the 1970s, though, there was no blood test to diagnose CMT. I discovered creative adaptations. I acted in theater, wrote and directed plays, traveled around Europe on trains, lived in Alaska for awhile, published a novel at 19 years old, had many many adventures, and now I have a beautiful family and baby girl of my own who is three and may or may not have CMT (she hasn't shown dramtic signs). I am 34 now, and taught primary school for eight years. Recent complications from my high arches are requiring me to scale back on my daily schedule, but now I am working part time and with my daughter full time, so it is not all a sad story I just wanted you to know amidst all of the scary diagnosis and projections into the future, that your daughter will have wonder, joy, and plenty to look forward to. Research is advancing towards a cure. You are a great support for her. CMT demands that we pay attention and treat ourselves well. It helps us find strength that we never knew we had and appreciate everyday moments that we may otherwise rush past. I send lots of positive thoughts to you and your family. Best wishes, Lenka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 Dear Lenka: Your words are so inspirational. Thank you for your thoughtful post. Only time will tell how her CMT will manifest itself. Whatever the case may be, I will try my best to give her love and encouragement. She can and will do anything she wants in life! It's not my daughter that has the problem it's me. I keep having these thoughts creep into my mind of cruel little children or vicious whispers. I took my daughter to a shoe store a few weeks ago and she had her DAFOs on. While I was holding her in my arms browsing, the woman next to me couldn't stop staring at her. I finally stared right back and asked " haven't you ever seen a little girl shopping for shoes before? " Needless to say she was extremely uncomfortable and had no reply. Of course most days fill me with my daughters giggles, but sometimes when I'm driving alone in my car I grasp my mouth and my eyes well up with tears because I'm overwhelmed by what's in store. But there is a reason for everything, even CMT. You're right about appreciating everyday moments! About slowing the rush to enjoy the little triumphs! How sweet those little triumphs are!!! M Quote Link to comment Share on other sites More sharing options...
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