This is random but some of you will understand this more than people who I am around
 

I had this thought today. Ever since I was diagnosed with hereditary neuropathy, I have prayed that if it is God's will, I will endure everything for it to stop with me and not affect my children. It made me think about what Jesus endured for me. Having this really gave me a new perspective on that love. I know this is random, and probably not the right forum, but most of the people I am around do not share the emotions, etc. that those of us that have something like this that our children can get, go through. So I felt like this is where I could share it with others who can relate. It brought the term unconditional love to a whole new level.

Yes, I too think what it must have been like for a Father to watch His son endure such extreme pain and the love He has for us, to do it.

I can understand your prayer that it ends with you and not be passed along to your children. :hug:

Just curious as to what type of hereditary neuropathy you have. Would you mind sharing? Thanks much.

At least one of my children did inherit this. It is very important not to blame yourself if that happens. I had no idea that I had this when I had my three biological children, but I would not have decided not to have children had I known. My son is quite seriously affected, at least as much as I was, probably more. It is painful to know that he is suffering, but there are many things beyond our control and many kinds of suffering in life. I have spent a lot of time at a children's hospital with our youngest son and there are far worse things that happen to children than CMT.

I do agree with your perspective, but like all prayers, the answers are beyond our control, the reasons beyond our understanding.

Not sure, they have diagnosed it so far just as hereditary sensory and autonomic neuropathy, have mentioned cmt, but I can not afford the testing for it. The new neurologist wants to do another emg test, and a nerve biopsy. He also mentioned spinal tap, but I am not doing that unless it is a 100% must. The nerve test is bad enough. I am concerned about the biopsy because in reading the forums it has brought more pain then people have had prior to having it done, so it worries me.

I completely agree with you and would have my children as well. I know that God's plan is so much better than anything I pray for, that is why I pray if it is his will. I just feel like, for me, going through this has given me a greater perspective of what he went through for us and am grateful for that. This probably sounds insane but I actually praise God for this because I know there is a reason behind even though I may never know what it is. You are right there are many things worse. My oldest complains of leg pains, has extremely flat feet, and has difficulty running so I will keep a watch on him. But, it could be too much reading on my part. You are always so helpful, thank you so much. I appreciate it.

My eldest son always complained about his feet and ankles, since he was a toddler. We tried very hard to make sure he had good shoes with ankle support. He also walked with a very loud, slapping gait, although he was extremely light. I had no idea then that I had CMT, but these were undoubtedly early signs in him. I don't think you are reading too much into it.
If I had had access to my father's family medical history we would have known much sooner. That there isn't any real treatment is some consolation, but it would have been helpful to know. I would have been gentler on both of us, without such high expectations. My mom always said I was lazy because I couldn't run or play sports and I internalized that message so deeply I still have trouble knowing what I should and shouldn't do. I am inclined to push myself too hard. A friend has agreed to help with the housecleaning which will be such a relief.