Bio about me and my family

 As I have spoken about in a previous blog I was born with muscular dystrophy called Charcot-Marie-Tooth. It is supposedly a peripheral nerve disease, however since I was born with it it has now spread to my central nervous system also. When I had Will I decided it was time to get genetic testing just to make sure that I knew what we were dealing with. It turns out that him and I both have Charcot-Marie-Tooth. The disease we were diagnosed with is not in itself so much unfamiliar, however it is the Type that showed up that we had that got the neurologist attention. We have a form of CMT type 1F. There is not much literature available on this type. My neurologist at Vanderbilt decided that he would ask his colleagues across the country if they have any results they showed this exact type passed on from the mother directly to the son and he was not able to find any. Also, in my case also have cerebellar degeneration,  which they had not heard associated with this diagnosis. He therefore published a story in a neurological journal. Since I  have had this disease since birth I’ve never really known any different. I was mobile for 38 years and then started having to use a mobility scooter. I am now in a power wheelchair which really doesn’t change anything except for the way I get around. The important thing is I still get around and I’m very active. Just because things don’t look so good on the outside doesn’t mean that you can’t do whatever you want. I  know all to well that it did affect certain things that happened throughout school from teachers that I had and the way they reacted to me, to some kids who just didn’t understand differences. The funny thing about all of these obstacles is I always came out on the better end. Academically I always exceeded whatever I was told would be difficult, and if kids decided to say something, I ended up with more friends than ever and still Have many of those same friends. I didn’t always handle things in the best way, but as I have grown up and become a mother I have totally changed my outlook on how to handle things. The last year has probably been the most challenging year of my life, as I’ve had three brain surgeries  in less than a year. Going from being pretty much independent, to losing that independence, has been the hardest thing Ive ever had to go through. Had it not been for the great support  system that I have had I don’t know that I would’ve made it through. There have definitely been times I have some major depression that I didn’t know if I could overcome. But as the days have passed and I have had time to recall out the things that of happened I now realize how incredibly lucky I am. I almost didn’t make it two times, and there is a reason for that. When you are able to escape close calls like that, that is God saying he’s not done with you yet. That is how I look at  every day I am allowed to be given. God had to work on me majorly because I certainly had no patience when it came to things holding me up to what I wanted to do. It is been a year now since I’ve driven and been able to take my son whenever I wanted. However, that is quickly turning around as I am now in driving training to get my wheels back. That seems like such a minor thing, but when you lose it you realize how much you appreciate it. I will end this very long post and saying please appreciate the people around you and the things that you are able to do whether it be as small as driving your car to work, getting up and going to work every morning, spending time with your family instead of in hospitals, and just hold the ones you love very closely. That is such a blessing that we often take for granted. God bless and have a great evening.

2 Corinthians 12;9 I will boost of my weaknesses so that the power of Christ may rest upon me.

8 thoughts on “Bio about me and my family

  1. Cindy, it takes such courage to share your story! You were one of my first friends. I have known you since we were little and always loved your laughter, spirit and friendship. I’ve always been interested in your diagnosis. And thank you for taking this risk because it is helping me understand it better. Your authenticity is inspirational! Only if we all could be as genuine in our own struggles, the world would be much different.

    Liked by 1 person

    1. I am so glad you have come to my blog and look forward to hearing your stories as well. I am always interested to meet people with the same disorder and with the good outlook. Thank you for your kind words about my blog, as I truly do mean it as an inspiration.

      Liked by 1 person

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