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)

Interrupting ableism...

I work in social justice education. I don't know if it's because of Javad, or if it's just what I was always meant to do. I practice what are called interruption, which are interrupting oppressive language and ideas and encouraging others to replace them with other language. I've gotten fairly good at it over the year, at least I tend to think so. However, there is one interruption that rarely comes with compassion or stealth and it is that of the word retarded. 

There is no word in the English language I hate more then that one. I didn't use to hate it so much. Not really until Javad. I remember my sophomore year of high school, Javad was two, turning three, and still didn't talk (guess what all these years later he still doesn't) and someone asked me if he was retarded. I got so activated, like I didn't understand how someone could assume such a thing based on his lack of oral communication. Taking a step back it wasn't about the communication, it was his whole package they were commenting on. Like him having MTM, and their perception of mental retardation, made him less of a person, but more that they could use it as a reason not to try to understand him and his communication style. Even more, it's that his disability DEFINED him, instead of allowing it to be a part of him. Still, all these years later I want to punch people when I hear them say it. I hate that word. 

The other one that gets to me is lame. Yet there is a part of it that makes me smile. When people outside the muscular dystrophy and alternatively abled community use it I get up in arms, it's just part of my nature, but there is something heart warming about hearing one of my kids at camp, or in the mtm community refer to things as lame. Especially because, of a population to understand not being able to use their legs, or to lack mobility and actually be lame, they're it. That said, I still don't use it. As a sister, an ally, a friend, I can't use those words and feel like I'm actually supporting them.

It breaks my heart a little when I hear people in this community use words like retarded (even typing it makes me uncomfy) and lame to describe things, like "wow my meeting was r-word" hurts my soul. Like they haven't thought about how that word has been used to disenfranchise and disempower the people we love. Maybe they haven't thought about it, and if you haven't I'm not saying you're bad, I am just very intentional because even being in this community, especially being in this community I would never want to say something that would stir up old, or new, hurtful, raw emotions.

In my perfect world they wouldn't exist. I just wish/hope people will understand when I explode for them using those stupid words...

If you've never watched this video before please do. It is one of the best interruptions of the r-word I've ever seen: 

 

For so much of this I could easily substitute Javad's name... and that breaks my heart. This before you speak because you never know who's listening.

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.

You don't see it until you have to

I've had a lot of people ask me what the biggest thing has been that I've noticed in the last 11 years with Javad. I don't think they ever get the response they are expecting. They always wait patiently for me to say things like, "getting used to nurses in your house" or "the humming of the machines" or even "the constant consideration of health." Sure I notice those things but that's never what comes to mind. You know what does come to mind? Sidewalks. I think about them all the time.

Being in Illinois I didn't think I would think about them as much. I mean hell, for the first time it doesn't stress me out to be living on the Second floor WITHOUT an elevator. That feels weird. But I just kind of figured that I wouldn't notice the sidewalks when I wasn't thinking about if Javad could use them. Well, I was very wrong. Everyday when I leave my apartment I notice how broken up my road is and how dangerous it would be for him. Or I notice the lack of ramps that get on and off of the sidewalks. It's almost like the damn sidewalks are haunting me. I don't know what it is and I don't know why I can't stop thinking about it but nothing is accessible here. No wonder I haven't seen more then ONE person in a chair in the entire 10 days I've been here (cause trust me I would have noticed them for a mile away if I'd seen any others).

It's like there is this never ending monolog in my head "you should say something about the lip on this door," "how ever is someone supposed to get in here on their own without a ramp," "has no one in this town ever heard of an elevator." The list goes on. I feel like a crotchety old lady bitching in my head about how no one ever thinks about the one on wheels. Here I am writing a blog about being the one that walks and it seems like all I ever think about is the one on wheels. It's funny how that works. For the real first time since Javad was born everything doesn't have to be all about him and yet in my head it still is. I'm not sure if that will ever change... regardless, this is who I feel like:

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 But no one wants to show her how to find the damned ramp....

 

This town frustrates me, but almost more... I'd like to not think about how the wheels can get onto the sidewalk when I've got two legs that work just fine...

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....

It has to begin somewhere: November 1, 2001

I didn't really start to learn who I was, or who I wanted to be before Javad. There are days that it feels like my life kind of started that strange and terrifying day at Providence Hospital. I'd like to think that my eleven-year-old self had a plan before that, but if I did, I don't remember it. I don't remember much of my life before Javad. I remember being happy and I remember a lot about my mom. I remember having this amazing family and the biggest thing that I was afraid of was the kids teasing me for being fat at school. But here I was, starting the 7th grade, my mom was pregnant with the baby sibling I always wanted. I was thrilled. What wasn't there to be excited about. Before I can truly tell you what life has been like since Javad, it's important that you understand what it was like the moment I met Javad. It's a moment I'll never forget, though there are more days then not that I wish I could.

So here I am, I'm eleven and I'm preparing for the birth of what will be my youngest, and only blood related, sibling. I was overwhelmed with emotions of excitement, fear, and curiosity. My parents promised that I would be the first person to hold the baby, and as I made my way to the hospital I kept playing the scene of holding a newborn over and over again in my head. The time had come. I was sitting in the hallway outside the surgery room (my momma had a C-section), waiting impatiently for my dad to bring out a baby brother or sister. But instead of my dad emerging, a nurse comes rushing out of the room, holding a small, nearly lifeless, baby. She sped passed me, snapping at the nurses near by about things like “oxygen,” “critical condition,” and “the ICU.” So there I am, sitting on the floor, in the hallway, of Providence Hospital, thinking that the baby I had been so impatiently waiting for since I was three, was going to die. Being a minor I was too young for anyone to tell me what was going on. Instead I got to sit and wait for my parents, or grandparents or ANYONE, to tell me if my baby brother was going to live. I walked over to what the nurses had referred to as "the ICU" hoping to sneak a peek at the face of my delicate, sick, potentially dying little brother, but the windows were too high for me to see in. Remembering back it was like the scene from the movies where the kids looks up at the sky scraper and it seems to grow taller, well those windows seemed to get higher and higher the more I looked at them. My Grami was with me, as still I was too young to be alone (though in this moment I felt like I had aged years, even though I still didn't understand). My Grami is the one that noticed the vacuum that was in the corner by the janitors closet. I don't quite remember if she asked or if we just stole it. Regardless, we pulled it over to just below the (growing higher) windows, and standing on top of it, on my tip toes, I was just able to see over the wall and for the very first time peer at this tiny, frail, body, and in that moment, my whole life changed. There was Javad (I knew his name because I knew that was going to be his name had he been a boy), under what looked like a clear bucket, not moving, barely surviving (in my 11 year old mind). No one had told me anything, I was terrified. I was angry. I felt alone. I wanted my mom to be un-sedated from her surgery. I wanted to wake up from what already felt like a nightmare. It was supposed to be one of the most exciting days of my life and instead it was turning into one of the worst. I decided that I didn't ever want anyone else to feel what I was feeling in that moment. I wanted to find a way to ensure that no other child was left alone; knowing nothing, lying in wait to find out if the child I already loved was going to survive.

Though sometimes I wish my day had ended that morning at the hospital, it didn't. Looking back I think it was in a sense of not knowing what to do with me, but my grandparents (or my dad, who knows), took me to school. I'll never forget walking into my second (or third) period class. It was Ms. Smith's class. She was my core teacher, and even a few months into the school year I knew I loved her. She asked me to tell the class about my morning. I was still so excited that I told them about this amazing little boy, but I didn't stop, I told them about the machines and how little he was and all of a sudden I was scared. The TA took me out in the hall and I cried, whether of joy to have life feel normal or fear I don't know if I'll ever know, but I cried. That was the day that I lost 90% of my friends. Everyone says that middle schoolers are cruel, but I don't think anyone understands that better then me. I remember people that I thought were my friends coming up to me in the hall saying that they weren't going to stand by and wait for me to fall apart, and that they didn't want to be around an "emo kid" like me. I don't remember being particularly emotional that day, mostly confused and bewildered and scared, but apparently, to the 12-14 year olds that I went to school with, I was too much to handle. I went to school the day after Javad was born not knowing who was going to stand by me and who had already chosen to walk away.

My life really began when Javad was born. I don't know who I was before, but I know that I wouldn't be who I am today without him. The first day was hard, one of the worst but I am not sure if it was the worst. I am sure there will be harder. There have also been days that were amazing. Those are all stories for another day. Today, I needed to talk about the beginning, cause it all starts somewhere, and mine began in a hospital. 

I am not necessarily writing this so that anyone "understands" or for pity (though I know I will get that). Mostly, it's because my life isn't something a lot of people know about. I have my person, that really gets what it's like to live this life. My person that is there for the calls on Javad's birthday and the midnight calls when he goes into the hospital, the person that is there when I am angry with him and my parents and the fact that this is my life. The person that stands there and understands 110%. I couldn't have survived the last few years without her. That said, this is because there has been a lot I have been through over the years that may help others. Little girls, that like me are scared and don't know how to tell their mom, who is already crying, that in that moment they don't love their brother and that they wish life could go back to "normal". Or the moments when all their friends get to go and do things and you can't because your brother has a dr. appt or there is no nurse or whatever. I'm writing this for them. The siblings that have had to do it alone, cause it's scary, and parents speak a different dialect of the same language. This is for them, whether now or when their older. Cause I did it alone for the first 7 years and it was awful, and if I can help it no one will ever have to again.