When I was a young boy, I did not know that I had the Charcot-Marie-Tooth disease. I was an adventurous and curious kind of kid who never really got into trouble unless you call accidents while exploring my universe trouble.
I loved exploring the dirt hills on my bike at the end of the street which wasn’t far where we lived. There were great trails which lead to these hills and you could do jumps! A few friends were better than me but it was still fun. I loved to make forts in the woods too. I remember one we made next to this huge tree. We had old carpets and blankets spread out to create a floor so it would be our place to hang out. We leaned several good size boards against the tree to create a roof. It was fun.
However, I knew something wasn’t right and, at times, I was embarrassed about it. When it came to those infamous P.E. classes, I wasn’t able to run and jump hurdles like the other kids. I wasn’t able to pull myself up to do pull-ups or even do sit-ups. But, fortunately, what the other kids said, didn’t bother me enough to “scare” me for life or make me want to seek vengeance I just went on with life.
As I grew older, I knew or wondered if something wasn’t right because I was uncoordinated and had no interest in any type of sports. While other boys my age were strong and athletic, I didn’t quite develop as they did. It wasn’t something I focused on though but there were plenty of times of embarrassment.
When I look back at those days, I do not have any horrible memories of any mean or rude things other kids did to me. I’m not sure why I don’t because there were plenty I could remember or that could have really hurt me. I think the fact that I knew my parents loved me, whether I knew it from them saying it frequently or if I thought about it subconsciously, I’d have to say it kept a good positive attitude in me knowing it.
In my humble opinion, whether your child has Charcot-Marie-Tooth or not, you should verbally tell them, “I love you!” every day.
