" Mom, why does all bad things happen to me?" Words that I will never forget and will forever touch me deep down in my soul. How do you answer that question? How do you tell your 14 year old that the reason why he has reverse scoliosis, and leg length discrepancy is because you passed down a gene that will impact every moment of his life. How do you prepare him and yourself to show him that he is as normal as any kid his age? How do you prepare your child for battle? A battle where the only ones are he and his CMT. Basically a battle with himself.
Sitting in the car, getting ready to leave the doctor's office. And my son with tears in his eyes asked me that question. I felt and I'm also sure I looked like a bullet train had hit me. Never expecting that in a million years. What felt like a life time to answer him and also trying to take into account that my two other kids where there to listen to my answer. I knew I had to be strong for him and his siblings. I pushed down my tears and pulled up my anger.. My anger toward this disorder. I looked at him directly into his eyes. "Marko, I don't know why. I can't answer why, but I can tell you that you are not alone. I will be there every step of the way. We will do this together!" "You are stronger than you think you are, you where given this challenge for a reason and you will take it and you will run with it." I don't think he had seen such determination on my face and in my eyes before, but he wiped his tears and with a very strong voice he said "Ok Mom, I can do this." I don't know how I did it but I was able to hold myself together until we got home and with the excuse that I needed to get some phone calls done. I locked myself in the bedroom and cried until my tears ran dry. For months I felt so guilty. Blaming myself for passing this to my kids. Yes, my kids. You see 2 out of my 3 kids have CMT1a. It runs on my dad's side of the family. And I jokingly say to people, "Why couldn't I have inherited a million dollars, instead of this gene." But it is what it is.
As for my kids, I do all that I can to show my kids that OUR limitations are in our heads not our bodies. That it might take us a few extra minutes to do things or that it's ok to ask for help when it is needed. I don't treat my kids like there is something wrong with them, instead I push. I push because life is always pushing us. Because I know what they are capable of and I can see them thriving in a world where people will look at them different, because in my eyes they are perfect just the way they are. And I will continue seeing them as a whole. I see the strength in them and just with any child you feed their dreams and always encourage them to move forward. My kids are teaching me to be a role model. I do the things I do because of them. The real truth is, they are MY heroes. My reason for fighting, for educating and for spreading awareness.
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