Sometimes it's the little things

So I've spent a lot of time lately getting frustrated about the little things in life. Not even anything having to do with Javad. Just worrying about money and relationships, school and work. I mean those things are important don't get me wrong, but they aren't the most important things. I've seen a lot of posts on facebook from people in this community about the little things. This person lifted their arms, this kiddo was babbling, this kiddo sprinted off the vent today. Those things seem minor to people that aren't a part of this world. It's crazy though, cause those are BIG things. Big little things. They may seem like minor, tiny details of life but they aren't. They are MAJOR accomplishments that warrant celebration and a medal.

Okay maybe i'm exaggerating just a little bit, but seriously. I forget sometimes about the little things. I always think about the big things: Javad is alive. That's really what's important at the end of the day to me. But it's also the little things. He can read, he has friends, he loves school, he hates things (and people) that are too high energy. Those things matter too!

Some of you know that my family has been in a battle with our insurance company. To some people having our private insurance company pay for Javad's nursing is a little thing. What does it matter? He has nursing. He isn't being forced to go to school alone. My parents can still work. It's the president of it though. We pay, so they should too.

Sometimes it's the little things, and sometimes it's the little things. Sometimes the little things are big things.

What does it mean to be your sister?

If I have said it once I have said it a million times. Being Javad's sister is a blessing and a curse. I have the love and support of a community that understands the hardships while treasuring the good moments. I also have a little brother that loves me unconditionally, though he doesn't know how to show it often. One of the hardest things about Javad isn't necessarily the MTM. I mean, don't get me wrong, that is a struggle. One of the hardest parts is the quirks.

I have been saying since Javad was little that he has autistic/aspergers traits. You can't really deny it. He's wicked smart. He'll watch the same clip (to the milisecond) of a video over and over again. He has a total melt down if there is a break in his routine. He doesn't handle change. He also doesn't understand people's emotions a lot of the time. Doesn't understand why people's feelings are hurt when he pushes them away, or won't let them near him. Everything is on Javad's terms.

Living so far away that's been hard. I would love to call on the phone and have him want to talk, or want to see me when I facetimed with my mom. Granted he did see me and smiled and gave kisses but it wasn't his first choice. He would rather have continued watching whatever it was on his Ipad. It's funny to think that I always make light of the 30 second clip over and over. It's like he knew that he would be a pre-teen during the rise of vine. Vine was made for my brother. Truly it was. It doesn't make it easier though. Him being 'different' isn't easy. I wouldn't change him for the world, but there were days that I wish he was like everyone else's little brothers so that I didn't have to explain him. He's not though, and he never will be, and that can be hard to choke down sometimes.

Don't be sorry... he's kinda a big deal

 I love my life with Javad. It's comical though. It's funny to talk about him now that I am in this place that knows nothing of him. I haven't seen anyone in a chair on campus or anything like that and so sometimes it feels like I'm talking about him and I get the "he's in chair >.<" look, as if that is some strange anomaly. Maybe it is an anomaly here...

I remember when Javad was a baby and I would talk to people about it. My speil always seems the same, "he's an amazing kiddo but seems like a lot. He uses a power wheelchair for mobility, uses a vantage speech board to talk, which is like a computer that he types into and it talks for him, and he's on a ventilator part time. He's a really amazing kid though." I get this, "HOW IS THAT NORMAL" look most of the time, which is comical. What always seems to catch them is the chair. "Did he ever walk?" "Will he ever walk?" As if walking is the end all be all.... It really isn't, just in case you were wondering.

I haven't ever cared if Javad could walk or not. I mean, do I have dreams where he's running around? Of course. Do I have my moments where I wish I could chase after him like I did Simon? All the time. But him walking was never a priority. I want to know that he is going to be breathing. I would love if he could talk. I would love to have him share a bowl of ice cream with me while we watch a movie. Sure I would love if he could come and curl himself up into my lap (though the image of him doing it he is always about 2 years old, looking like my nephew does now except with Javad's face, and he never grows up). But I can still chase after him in his chair. I can still snuggle up with him. I still have him. That's what it's important. So keep calm, it's just a wheelchair... it's the least of my worries!

From all to...what?!

So I have already talked a little bit about Javad's impact on my life within social justice education. Well today I am stuck on it. Whether it be experiences at work or during my trainings this week I can't help it. Over the last (almost) 12 years I have both silently, and out loud, expressed my anguish and frustrations when things didn't work the way I needed them to work. Rather, I was never afraid of talking about how the way places did things, be them work, school, the mall, a park, you name it, alienated specific populations. ESPECIALLY, if they made it so that people like my brother couldn't participate.

I know what "reasonable accommodations" means. I think it's a load of crap, but I know what it means. I have never been in a city that didn't strive to fullfil their accommodations. I am used to being able to say, "this shit doesn't work" and having someone asking me to propose a solution. I am not used to being in an environment that does, what I feel, is a minimal solution.

In my life with Javad everything is about adjustments and accommodations. Javad doesn't talk. He doesn't walk. He doesn't eat. He can't sit up on his own for extended periods of time. He can't do a lot of things in the way that a lot of other people do things. That DOES NOT mean that he can't do them. It just means that someone who cares and is willing to, has to come up with a way that he can do it. I remember my first year at camp with Javad. I was trying to convince him to play sports, which he DID NOT want to do, and I was problem solving how to attach a hockey stick and baseball bat to his chair so he could play. It wasn't hard to figure out. I spent a few hours on it, but I could have done it if he wanted to play.

Adjusting things is never the first solution. It takes more planning and it takes more thought to it. It takes questions and utilizing resources. It's not the first thing that comes to mind. It's process of elimination and testing things out to find the best method. I wish everyone was willing to make this effort. Being here, in this new job has reminded me why I am getting the tattoo I am getting in November. I will be getting a(n almost) half sleeve. It's a scene fromt he lorax with a quote from Naomi Klein. The Lorax is in the foreground standing on the stump of the first tree that was cut down. The quote is "Social Change comes when you least expect it, all you can do is be ready."

So how do you make ready a place that sees no need for change? How do you rise above the barriers and move into a new world of possibility? How do you rise to the occasion of social change?

I care a whole awful lot. Now what do I have to do to make it better?

I'm not proud of it, but it's my truth!

I've been figuring out how to write this post since before I started the blog. We all handle crisis differently. I come from a family of women that are strong. And I am not talking like physically beefy or anything like that. I am talking about emotional brick houses. We are all emotional, there is no doubting that, but when crisis strikes we look it in the face and we handle it. We are calm, we are level headed, we are dealing with it. That said, we aren't strong all the time. You can't be. Not and still hold it together.

Well, after Javad was born I didn't hold it together well. Or I held it together too well, I'm not really sure. My older brother dove into his studies and never came up (doesn't help that he's brilliant). My little brother flew into his friends and video games. I went into drugs and alcohol. Before you jump on the, "you couldn't have been that bad" or the "I knew she was trouble" just breathe for a second. The person you know now, is not the person I was at 14, 15, 16, even 17. When Javad was 2, and I was out of middle school (where I had the best school counselor in the entire world that supported me and was there for me EVERY day when I needed her) and starting high school in a brand new school with none of my friends (went to a private school) and far from home. I lost my SHIT! That is the nice way to say it.

I mean granted in middle school I had dabbled in pot smoking, who didn't (I like to feel like everyone did, it makes me feel better about myself), and had friends that did risque things, but even then my attitude was the worst of it. In high school I just couldn't deal. Javad was sick all the time. My mom was never home. Dad was stressed out on a regular basis because Javad was always sick. I had the perfect brother and I felt like my head was going to screw off and fly off to a far away world and I was going to fall apart and never put myself back together. My freshman year wasn't even that bad. I had been taken in by some Senior who never let me out of their sight and watched over me like a lost puppy. Maybe they sensed that I was on the verge. Maybe they could spot the warning sign labeled "EMOTIONALLY UNSTABLE" a mile away. Who knows? But they just delayed the inevitable. 

I don't really remember when it was, whether it was sophomore year, or summer in between freshman and sophomore but I got on a regular smoking pot (had already been smoking cigarettes since 8th grade in private) everyday rhythm. I drank every change I got. I stole from my parents and my brothers (and then replaced whatever I stole on payday). I worked really hard at the jobs that I did have to support my habit. I got into harder drugs and prescription drugs because the numbed my brain and stopped me from feeling anything. Anything I could get my hands on I was taking. Ironically, I was abusing adderall and  anxiety pills at the time because they made me focused  but didn't interrupt the numb cause by the other shit in my system and they are probably the only thing that kept me functional seeing how as an adult I was diagnosed with an anxiety disorder AND bad ADD. Little did I know that I would be on some of the same things as an adult. 

I didn't think anything could hit me. During what would have been my junior year Javad coded in the ICU. He was three and a half. It was the winter before I completely lost it. Javad was trached after being in the hospital for six months. Not a few weeks later I went to a concert with someone that had been a family friend for years, got too drunk, agreed to things I didn't mean and when I changed my mind he didn't listen. I was raped by one of my close friends.

Looking back, that's really when I started to unravel. I drank more, did more drugs, wanted to feel numb and forget what my life was. More machines were moving into our house. Shit was scarier with Javad because I no longer understood what was going on. I was in constant fear that he was going to die at any moment. I couldn't think straight because I was rarely sober and so I did more to try to get my to focus and forget (which let me tell you, you can't do both well). It was the following spring that I literally hit rock bottom. I went out with some friends, drank more whiskey then should have been possible, (I don't even remember if I had anything in my system drug wise, I do know I had a prescription for percocet at the time) and I blacked out. I blacked out, passed out in the back of a friends van, puked, and a good friend saved my life by not letting me choke on myself. Thank god for her. 

I woke up 16 hours after I last remember in the ICU at some hospital with my mom there, totally disheveled. Apparently I had been missing for 4 hours and then they tried to go into a subway and i collapsed, they called 911 and... I don't even know. I know it was bad and I was lucky. That's all they kept saying. 

I moved forward after that. You can't really hit any lower then almost killing yourself on whiskey and pills, by accident. 

I wasn't always like this. I didn't always have my shit together. My mom isn't kidding when she says that during the "hard years" she didn't know which one of us was going to survive. It was only going to be one of us. I tried to have it be her. Some how, probably because I hit rock bottom we both made it. How my mom did it with me being in the shape I was in, Javad being in the shape that he was, still working and making sure that our family still gave a shit about each other I don't know. She's a pretty amazing person. 

We all handled it differently, my brothers and I. I handled it by trying to be strong. Sometimes you can't be strong anymore and at the time I couldn't allow myself to fall apart. Who would be there to put me back together. I don't think I'm alone anymore. But those years, those years between Javad's birth and when I turned 18 I didn't know that I had anyone else. I was pretty certain that I was by myself. Thinking back my timeline might be off because I don't think Javad was that young when my stuff all happened. I just know that it was a lot. My stuff is all in order. I still think of it as the unraveling. I still tell people that if I met who I was then I wouldn't give them a passing glance. I couldn't do it alone, but that's the beauty, we don't have to. 

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:

]]

 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.