I wanted to give you an out...

I have been overcome by the response to my first blog about my life with Javad. For so many year I have been afraid to share my journey with people because, there is a part of me that has been afraid for people to get close to Javad because then someday they would have to lose him too. Not that I didn't want Javad to have amazing people in his life, but I wanted people to have a choice. For some reason it makes me think of Prince William and how he wanted Kate to know what his life fully entailed and give her a chance to leave before asking her to be a part of it forever. That's always how I've kind of felt about Javad. Living with him is a lot, there's a lot of machines, a lot of explaining, a lot of worry, and a lot of risk. I don't ever want to feel like I've forced someone into this life without them knowing all what it entails.

That said, I hate telling people about him. He is an amazing little boy and I love him to pieces. However, I hate explaining to people who he is and what our life is like with him because WITHOUT FAIL I get the look. It's the "I'm glad it's not me" look and I hate it more then anything. More then the doctors and tubes and sickness and lack of Javad's ability to run and communicate. More then anything, I hate the look. There is really nothing that makes me feel any smaller then that. It makes me want to yell at people and say that yes, they should be glad it's not them because if it was they wouldn't cut it! They wouldn't be able to step up and deal with what needed to be dealt with. They should be glad it isn't them because if that's the first thing that comes to mind then they aren't really realizing that they are saying that they are sorry that THAT PERSON isn't in their family, and that's awful. I know my parents get the look as well, but I think it's different, at least it feels different. Javad's my brother and though I will always love him most days it feels like a choice. After the millionth time of getting THAT LOOK, it doesn't really feel like something I want to keep choosing. It's hard always have people feel bad for you for something they don't understand.

Then I feel like I need to downplay it, "well he's an amazing kid and he's funny and we don't even realize what he needs after a while because it becomes second nature," which is true but then I feel crazy saying it. Or I'll pull the, "our family gets to do all the same things as other families we just have to do them a little different," which is also true but it's like somewhere there is a script that tells people the answers: "don't you sometimes wish you could just do things like everyone else and not have to worry about adjusting it" or "that's unfortunate that it even had to be second nature, must make it hard for new people to come into your life." REALLY?! It makes it hard to actually think people are interested and not that they just want to judge you for being crazy. What's worse is when people ask me if I can really communicate with him when Javad doesn't talk. Did you know what your 2 year old wanted before their language was developed? You did?! Well image having 11 years to hone your understanding skills, yeah it's really not that hard.

Sometimes it feels like my mom has all the answers and like she's stood in front of the mirror practicing them like a speech she's going to give to class. I don't understand it. I didn't choose to have a little brother and, as awful as it sounds and feels to say, sometimes I wonder if I would have wanted it if I'd have known this would be our life (granted I wouldn't take Javad back for anything). I didn't have a choice in his ability, or his language so why does it feel like people are judging me for having him? I support him and stand by him and am there as much as I can for him to be the most amazing little boy that he can be and get to have all the same chances that other 11 year olds do, but that doesn't mean that my life is awful like they imagine it is. Just once I wish I could have a conversation where someone learned about Javad and had the response be "wow he sounds like an amazingly strong little boy" without getting this look:








 
Just once would be nice....