Wednesday, March 13, 2013

I hate you myotonic dystrophy

As I watched my brother Aaron play with my son I felt so many emotions going through me.

I can see his body deteriorating faster than I expected it would.

He suffers from a form of muscular dystrophy meaning his muscle are wasting away.

This is a horrible death sentence but seeing my brother deal with this has made me have such admiration towards him.

During the summer time you will catch him running around his neighborhood almost daily if not he is on his road bike or he mountain biking up on the mountains by his house.

He has not and will not allow this horrible disease to define him and has told me that he will run/bike till he no longer can walk. I love him for that. Last year after being told he would not live pass 50 if he is lucky and would most likely be wheelchair bound within the next few years he took out some of his savings and went and bought himself his dream car in cash because he wants to be able to ride his car as long as possible and enjoy it.

I remember growing up leaders from our church making fun of my brothers and thinking they were weird it hurt back then but now that we know what made them "weird" it hurts even more. These people do not know the damage they did to my brothers and if only they had taken the time to truly get to know them they would have been shocked at how amazing they are. Shame on them!

I am so glad that Bentley is getting to enjoy his uncles right now and they get to play with him and run around and go on hikes with them. I am sure that my child and my brothers will have a wonderful relationship as he grows and they will be his buddies. He loves them so much especially tio Aaron since he is the more active one.

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