Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Hi, I am 48 years old. I had problems as far back as I can remember when I first started school. I was first diagnosed when I was 12. I have had more surgeries than I can remember. I have always tried to live as much life as I could muster. I have three children. So far only one has obvious signs of CMT. Until recently, I haven't let CMT slow me down . I have been on disability for about 10 years, because I couldn't handle working anymore because of my hands. They just don't work like they used to. So I found other things I could do. I recently became a gramma. While I was trying to babysit for her on a steady basis, everything caught up with me. I found out what my limitations are. I basically wore myself out trying to do it all. The problem I have is my son will not acknowledge how serious my problems are and it has caused a huge problem between him and I. I am now am faced with the possibility of rarely seeing my granddaughter because he doesn't want to face what I am dealing with. It seems that it is a situation he doesn't want to deal with. It is entirely possible that I could end up in a wheelchair or at the very least needing some sort of assistance getting around and I can't be a babysitter for him. It is almost like I am of no use to him. It hurts me a great deal that he feels this way. I have tried to explain what this about, but he doesn't want to hear it. I am trying to find ways to deal with this, but it is difficult. Once you have seen your grandchild, all you want is to spend time with them. It is not looking good for me to be seeing her much and it is hard. I have also tried to explain to him about the possibilities of passing this on, and he is not listening. Has anyone else has this problem and how have you dealt with it. I have been talking to the mother of my grandchild, and she seems to be more receptive to what I am saying. The problem is my son. He doesn't want to go there. I am really trying to find ways to cope with everything, but it is getting more difficult. I have a daughter, who is an RN, and understands how I feel and that I cannot change what is happening. I would be interested in any ideas anyone has. I am still hanging in there hoping for a miracle, or at the very least, seeing my grandchild more often. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
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