The Song of a Broken Heart

Things are never as easy as people say they'll be. We love and lose then people convince us to love again. I've always been one to keep myself at a distance, from friends, family, lovers, confidantes. I've kept myself at a distance from the MTM community. I've kept my life a secret from many of the people in my life never knowing how to tell them what my life is like with a brother with an unpredictable lifespan. Never knowing how to explain to others the fear and heart break that accompanies your every joy and successful milestone knowing that others won't get there, not knowing if you'll reach the next.

Last year my heart was shattered into more pieces that I could count. I was dropped, from the highest height (or so it felt) by the person I had sworn my love to. Three years of one of the most unhealthy relationships of my life and just over a year ago (a year last thursday) I got a text that said some of the harshest things I've ever been told and I crumbled, alone in a new place without friends to save me from myself. This last year hasn't been the healthiest again. Learning to love myself. Learning to mourn and overcome. Learning to live without someone I thought I'd be spending my life with. I've opened my heart and been crushed then given a second chance and had it spat on. It wasn't easy. It hasn't been easy.

Last summer I also met the most incredible little boy. My boyfriend. The sweetest face that lit up when he saw me. A smile that could move mountains. The first MTM boy that I allowed myself to feel and love and be close to. I may never know what it was about him but he stole my heart. In the hands of a mere toddler I placed a huge part of my heart. His mom becoming a dear friend, the one that sent me my first care package when I needed it most, who told me their home was there after my first breakup in Illinois, who listened whenever I blubbered about being homesick. A family that even though new to my life became such a beacon of love. A little boy, that no matter how I spun it, brought a joy to my life like I haven't felt.

That same little boy, my sweet Louie, gained his wings and I haven't been able to process it. Like it doesn't make sense. I keep having days where I think to text his mom asking how he's doing, or I'm scrolling through her facebook page looking for pictures when it hits me that he isn't there anymore. Seeing his parents last night my heart hurt and yet felt empty. I haven't know how to mourn. Seeking the chance to burst into tears and have someone hold me until there are no more tears but instead I stuff the pain, heart break, and rage of his loss further and further down hoping I can ignore it. Bursting at random into tears in my car outside of my house waiting until the tears dry to walk inside, afraid someone will ask me if I'm okay. Cause there wouldn't be an answer.

This last year my heart has shattered twice in completely different ways. I don't know how to allow myself to be vulnerable again knowing that it can be taken advantage of or that another loss can occur. It's it really better to love and feel loss than to never have loved at all? Does the heartache stop?

I am scared. Terrified even. Every single day of what the pain will feel like if a death is closer to home. I can't turn my brain off for the fear of it. I don't know how to live in the good moments and the next planned adventures when in a second a "healthy" kiddo can be gifted his wings while the left of us are left wondering. How do people do this more than once? How do parents have multiple children? How do people open themselves up again? How do you find the motivation to just keep trucking along when running around or not moving at all are the only options that seem manageable? How do I stop the moments of random crying now that my life is slowing down to a "normal" pace? When you're too busy to breathe you're also too busy to cry, so how do you do it? I'm really not sure how right now...

It doesn't get easier...

I used to dream of a day that it got easier. Easier to be the one that walked, with the [mostly] working lungs, that could talk and move and dance. I used to think that being the one that "wasn't affected" was easier. I used to think a lot of things.

I think part of my "thinking" was always in things I was trying to convince myself. Granted I'll never know what it is like to be affected by MTM, I can only observe Javad's seemingly unwaivering chillness with 99% of everything. Today I am not okay.

I've said before, and will probably say again, I make a point not to get connected. I can't help but be attached to Javad, he is my brother after all, but I've been selfish and tried to prevent myself from getting attached to other people in the MTM/CNM community as well. I didn't want it to hurt. I didn't want to feel it if something happened. Well something happened today.

Just over a year ago at the conference I met the most amazing family. For one of the first times I did just feel like my expertise of being a sibling was needed but that I was needed. I spent most of the conference with this amazing family, bonding with the sweetest boy in a way I haven't bonded with another kid since my own brother.

We joked that Louie was my boyfriend. He'd flirt and smile at me, I'd hold his hand every chance I got. We cuddled and I talked while he looked on. He's a tiny, only a couple years old, but I felt tied to him in a way I can't explain.

This morning I got back to my desk after a meeting to one of the worst texts I've ever gotten. Louis had gained his wings in his sleep. A part of me broke. A part of me is broken. This part of my heart that I have protected for so long poured open like a flood gate and for the rest of today I have cried and struggled to hold myself together because this little boy that could barely hold my hand held a huge part of my heart.

I use to say that each death didn't get easier but it didn't get harder either. I lied. Not just a white lie, but a bold faced lie. The longer I am in this community the more invested in their lives, in our lives together, I get and the harder it gets. In the 10 years since Javad's diagnosis I have never been hit like this and I don't know if it will ever get better. I don't know how people get better from things like this.

Marie, Louie and Me

I think it was love at first sight from both sides

Louie and I at the conference

Louie and I at Where There's a Will There's a Cure Golf Tourny

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.