Some of my best memories are the ones without you in them

This is going to sound awful, but honestly some of my favorite memories since Javad was born are ones without him in them. When you are a sibling of a boy with MTM or CNM your life revolves around your brother, which it has to. That doesn't mean that it's fair. It seems like half my childhood was about "Javad needs this" "Javad can't do that." Which trust me, I totally get it, but can we take a step back and have it be about me for five minutes. There was always a performance or game or play date or whatever that my parents had to miss because of Javad. I'm gonna be honest, there are times that I resented him for it. I know that it isn't fair but how can I not. It's not that I actually resented Javad but more that I resented our life. I wanted to be like all the rest of my friends who could just go to the beach for the weekend, or could go out to dinner on a whim. Which sure, we could go out to dinner as a family, if we wanted to be home by 6 when the nurse had to leave. That or we only got to take one parent.

There is so much guilt that comes with wanting it to be about me once in a while, because trust me I know that it NEEDS to be about Javad, but that doesn't mean I always want it to be.

That's one of the things my parents did really well, they gave us time to be a family...without Javad. Some of my favorite memories were going to the beach to get Mo's and have a family day and we'd leave Javad home with the nurse. Even going Christmas tree shopping are cherished memories. Not because I don't want him to be there, but when he wasn't it meant that we could relax. It wasn't about rushing through a meal so he wouldn't get bored, or including the child that didn't talk in conversation, or finding a way to do something fun that he might enjoy too. It was just about being the big kids and having fun with our parents. I never had to worry about his vent going off or sand getting stuck in his tires, or having to rush and choose flavors of salt water taffy because Javad was outside with mom cause his chair wouldn't fit inside.

I loved those days that we got to be a family, without Javad. There were always designated times. Times that we did things with him and times that we did things without him. It was nice knowing ahead of time whether we got to breathe and have it be about us, the three big kids, and when it was going to be about Javad.

So here I am, at twenty three, and for the first time since before I can remember, everything isn't about Javad. The drive to Illinois was about Javad, finding housing was always considering him, and now here I am, in Illinois and my life isn't centered around Javad. That doesn't mean that I don't think about him on a constant basis, but it is nice not having to worry all the time. Make sure there are times that it's not about the one with MTM and it gets to be all about the sibling, because everything else is about the one with MTM, and that's okay, because it has to be. 

Christmas tree shopping in 2005, without Javad.
(Left to Right: Stesha, Simon, Dakota [our cousin], and Adam)