I have been struggling a lot lately with what to post, therefore I haven't.... See talking about the ugly things in life isn't that easy. Bearing it all is hard. Putting what we feel into words is hard. Putting those words in writing is even harder, because than there is no going back.
I always knew there would be a day that this whole CMT mess would come to a head, but I guess I really never thought about it. I think I was in denial. We all are in some sort of denial over it. I mean...I know my boys have CMT, yes I know it is a progressive disease, yes I know there will be ups and downs and yes, I know it is not the end of the world. Yet, here I am writing this because my child is hurting and I don't know how to take the pain away. I was in denial that it was affecting him as much as it is, and he was in denial that it was affecting him as much as it is.
I am writing this not only to help us through this process, but hopefully to let other families know that they are not alone. I know we can't be the only family out there with CMT, that is struggling with some sort of emotional pain. I have done enough research on CMT to know that depression can play a big part in it. Especially, in children with CMT. This is exactly why I want and need to address this subject.
I am lucky that I have a child that is strong, and that just happened to be taking an AP Psychology course these last 9 weeks of school. So, when they reached the topic of grieving, it hit a nerve. He realized that he was actually going through the 5 steps of grieving- denial, anger, bargaining, depression and acceptance. I know a lot of you are probably shaking you head, but it is true. Grieving doesn't have to be over a personal physical loss, you can grieve over a significant life changing event. He is grieving over the loss of the future he had dreamed about since he was a 6 yrs old, going into the Military and being a Navy Seal. A loss of a passion, running and the loss of his future as he knew it. The future he had planned out so strategically, was all but wiped out in one fell swoop.
To all of the parents of kids with CMT, remember it is a disease. I think a lot of people think that since it isn't a terminal disease that its not big deal. I AM HERE TO SAY IT IS! Just because it is not terminal, does not mean it doesn't affect them emotionally. Remember, kids have peer pressure, school pressure and family pressure to deal with daily and then to be diagnosed with a progressive disease.....a disease that may affect their dreams? Any kid, I mean any kid, would have some struggles. It is after all a lot to handle at any age.
So make sure to keep the lines of communication open. Make sure to talk to your child's teacher(s) about ways they can help. If they no longer can do a passion, help them find a new one. Let them know that they are not alone. There are other kids out there going through the same thing or something similar to them. Help them find a good resource for support like the CMTA Youth Group on Facebook. Or contact a counselor that specializes in youths.
Where does this leave us? It leaves us taking one day at a time. Accepting that the past dreams are gone and we need to make new ones. That we need to live everyday as if it was our last. That as much as we all want to be strong, we all are weak at times. We need to learn to reach out, even when we don't want to. Most importantly, love your kids. Let them know that its o.k. to struggle, life is not perfect and everyone has their own struggles internally.
Until Next Time...................."Stay Strong,Believe" Carter Hayes
