Trading in these broken wheels for brand new wings

I haven't known how to write the last few days because yet another size of junior wings were given out this week. It's the thing about being in the CNM-MTM community that I hate most. There is a part of me that is bitter and doesn't want to think about it as a child gaining their wings. I want to be angry with the world and just not understand why they have to leave, why the research can't be faster, why their lives can't be longer, and why a positive spin has to be put on it.

I know that days in this blog just seem angry, and I feel the need to add that, for me, anger is the first way that I express that I'm scared. It terrifies me every time we lose another boy. It terrifies me and I always call my mom immediately because I need to know that Javad is okay. I need to know that he is smiling and watching dvds and healthy. There is a part of me that sees the post and stops breathing for a moment because I know how lucky we are that he's going to be 12 this year. I don't know if I am ever going to stop being scared.

I intentionally keep my distance from other families. Somehow it protects my heart from having to hurt as much. Sure there have been those boys thats passings have left me in shambles but I try to maintain my distance so that I can keep functioning. However, the older I get, and the older Javad gets, the more I get to know people and the more I love people. I tried for a long time to crawl inside my shell and not talk to other people. Sure, my mom would keep suggesting me as their friend on Facebook and I would blindly accept, but I am terrified to invest in other families because I don't know what I would do if that day ever came.

I like to think of heaven as a playground. Mostly because I know that it would give the boys a place to play, but it's also somewhere that my Grandpa would sit on a bench and watch them play and smile. I like to think as grandpa watching over the boys (and girls) making sure that they have someone to go to when they scratch their knees, while they learn to work their new legs and arms. I don't ever want to think about the boys that I am close to joining him, but I know that grandpa would take care of them when they got there, like he always took care of me and my momma before me.