Monday, September 26, 2011

Glow Worms.


She was 19 when the life slipped out from her body. Its been two years to the day, but it feels like yesterday afternoon and yet a thousand years ago since i sat in that Houston, Texas hospital room and watched my sister die.

Brittany Danielle Burford was born dying. Sick and in the hospital since the day she was brought onto this earth. She faced and fought many battles in her 19 short years. Among the many battles she faced, She had open heart surgery before she could walk. She had spinal menengitus not once, but twice. The battleaxe even had brain surgery. No one could stop this little monster.

The people will tell you about the good and the sweet times. They always remember the best about people once they've past. I try to remember the bad. I try to remember Brittany as the spoiled little brat she was. That's what brings those tears to my eyes and a joy to my heart. I remember the gigantic pain in the ass that we loved oh so dearly, except when we couldn't stand each other.

At the very base of all her heart and prowess, at the very core of her being, wasn't a ray of sunshine, as they will have you believe. No, the core of my littlest sister was a brick wall of stubbornness. She didn't win all those battles with deasese with her big goofy smile, or even that smartass smirk. It was that gigantic brick wall of stubbornness, burried deep inside her that brought those diseases to their knees. Charisma was her weapon. She was a lover, she was a fighter.

She was the youngest of four, while I was the oldest followed by My sister Ryan, little brother Ben, and finally Brittany. Sure, she was bright and sunny as much as her poor little heart could muster. She was the runt of our litter, but she wouldn't let that stop her. Yes, we were dirt poor lower middle class for a good chunk of our lives, but as much as she could charm the pants off you, this little girl could scream and cry and fight for what she wanted, and she wanted the world, but most importantly, she just wanted to watch watch a bad Anime on Cartoon network or play some silly video game.

I hate how little comes to mind now days. So much of our past is locked in the rooms of my mind, never to see the light again. I don't remeber all the times we spent, but i do remember how excited we were when she finally came home from the hospital. I was nine years old. I was the oldest. She was our little glowworm. she had Jaundice so bad, they had to wrap her in a light to help calm the jaundice down. She was our little glow worm. A metaphor for whom she would become.

We got along like gangbusters. The distance in age brought us together. I taught her how to be a nerd. It didn't hurt we were both Leo's and cut from more of the same materials than our other two siblings. We took more after our mother's side of the family, where as Ryan and Ben remind me much more of our father's side of the branch.

Brittany and I were hooked on the cartoons. We would cuddle up on the couch and watch hours of cartoons. The only one i remember now was Dragonball Z, we were addicted to every sprawling battle, the drama and every single minute of that silly show. That was the beginning of her long lasting anime addiction. I remember how absolutely hooked she was on Final Fantasy and all those damned Role Playing games that didn't make a lick of sense to me. But i remember the cartoons. I wish i could remember more, but those things are lost to me know. Lost in the sea of yesterday.

Brittany and myself are the kind of people who have to burn ourselves to find out the stove it hot. We won't listen to reason and we have to just fucking DO IT to learn the hard way. Both of us have many, many scars to show for the many lessons learned.

For all those things i can no longer recall, i still hold one memory near and dear to my heart. I can't recall her age, but she had to be 7 or 9 years old. She was still going to AC Steere Elementry in Shreveport. My brother was already in Middle School, so it was just Brittany I picked up from school.

This was the height of her little brat days. the constant bickering and fighting between us and everyone. This afternoon was no exception. She climbed into the backseat of my 1986 Chevy Caprice, a gigantic boat of a car. She was always small thanks to her heart condition, so she generally sat in the back seat until she hit her teens. We fought and fought about her putting her seatbelt on. Who knows why we were in such bad moods. Just siblings in the foxholes of puberty. While driving down one of the side streets of our middle class neighborhood, navigating ourselves closer home,fighting all the way, I decided to teach little Brittany a lesson.

I hit the brakes.

BAM!

Brittany slammed into the back of the passenger seat.

She was mad as hell. She yelled. She cried. Brittany wore her seatbelt every single time she got in a car after that. Even still, this story still makes me chuckle.

Another fond memory was coming to visit in Shreveport. Brittany had no idea i was coming to visit. I liked it that way. Made things more special. I got to My mother's house in the middle of the afternoon. Brittany was taking a nap, as she often did thanks to the ravages of the sickness. I walked into her room and turned on the light. She had fallen asleep with watching Tv. The remote was still in her hands. I grabbed it from her and she slowly awoke.

She wiped the sleep from her eyes and i can still hear her ask, "Damian?" in her confused just roused voice.

I started pressing buttons onthe remote and picking things up in her room, I remarked to her, "This is just a dream."

She sat up in bed and had the most dissapointed look on her face as she realized she must be dreaming, exclaiming, "Oh.."

She started to lay back down, and i kept fucking with things in her room, and then slugged her in the arm. "Surprise silly. I am here."

When she realized i was just picking on her, she leaped up and hugged me harder than anyone as sick as her should have. It made her whole week. I'll miss those surprise visits and those big huge glowing eyes when she finds me asleep on her living room couch.

Since she never got to experience the world like many of us, she had a somewhat simple and niave view of things. She didn't see the complicated. She saw the simple solutions to our everyday problems in life. I remember talking with her about a girl i was kind of dating, who couldn't date me, but wanted to, but didn't. (Shouldn't have tried dating a 19 year old when i was 26...) She just simply could not fathom such a thing. Her advice was simple and sweet and out of the movies. It made my head hurt then, but makes me smile now. Remembering how much she trusted the entire world. How she would exclaim how I awesome I was, and she would tell me how to win these poor girls hearts.

I remember my mother calling me one morning. Seeing the number on my cell made my heart jump, thinking something bad had happened. As it turns out, I was just needed to refferee a fight between my mother and sister, from 1,000 miles away and on the telepone. I was the only one she would listen to. I didn't talk down to her, I talked to her like an adult. The real secret in conversation isn't how you talk to people, or what you say. Its how to get the people in question to say the things they need to hear. I could crack her code like no other.

Sure she was a little brat, but she was our little brat. Maybe she had a point to be. I think she always knew her time was short on this tiny little rock and maybe she knew she had to fight, tooth and nail, to get what she wanted while she could. I'd like to think instictually she knew, just as i knew that I would always be there to help bury her. I've always knew her time would be short, but that never made it any easier.

I know she knew the end was near. It was around this time that she started fighting to fly the coup. She wanted love and marrage and all the pitfalls that came with them. She wanted them then and now. The fight never stopped for these simple human needs. She wanted to experience love in all its glory. She would call me crying, working throught the pitfalls of heartache.

Even worse, once She called ME, and not our other sister, Ryan, for sex advice. (For which i told her i didn't want to discuss it and requested she call Ryan and never discuss these things with me ever again. ) She would call me to ask about Boys and how their brains worked. She would call me to bitch about our Mother, or crazy father. She would call just to say hello.

She died of an experimental surgery to fix her super rare lung/heart condition known as Lymphangiomatosis & Gorham's Disease. I would explain it if i could, but its complicated and I've never totally understood it. It had something to do with her Lungs excreting a chemical that most people's bodys absorb. Her body rejected this natual chemical and it filled up her poor little body, making it hard for her heart, lungs, and other internal organs to pump and function. You can read more about the condition at: lgdalliance.org

She checked into Texas Children's Hospital in Houston, Texas for an experimental surgery that may have been the cure to this horrendous battle she was fighting. She knew the risks and she decided to gamble on the cure. She lost that gamble, but i like to think she secretly won because she was brave enough to make that bet. She took the big chance to try to live a full life or no life, rather than suffer for a few more years with a half-life. That life is a big gamble and sometimes you've got to double down.

I battled hard with myself trying to decide weather or not to run home to Louisiana to help. I waited for them to ask me to come home, and if they had ever asked me to, I would have done it without hesitation, but they never came straight out and asked. So i sat here and battled with myself. I yelled at the heavens and begged for them to take me instead. I begged for the easy answer to this complicated question. I cried myself to sleep on several occasions, and I had one freakout drunken cry fest whilest drinking with friends when living in the Lark House.

After hours of fighting myself, it was decided that If i had gone home to help, I would have simply been putting my life on hold to wait for my sister to die. It was unfair for me to do that to myself and would be unfair to them to press pause on life to wait for anothers to end. I decided to stay and it was the hardest descision i ever made, but after I said I would stay... Things got easier here. I started working at the Triple Nickel. Dated an amazing girl. The universe will reward us when we make those right descicions. The universe will also punish us and will corse correct itself until we are finally on that right path. I know now I chose the right path. The rewards have been unmeasurable, and that is how i know now i made the right descision to stay in Colorado.

I still think often of those phone calls, of her reaching out, and me not being there. I remember the phone calls full of tears as she would confide in me and tell me how much she missed me. Or the time I came to visit and she cried and cried as i left. I think she would have understood and if the shoe had been on the other foot, I would never have asked anyone to put their lives on hold for little ole me, but I would have done it for her, for them.

So now we move on without her, and try to live life a little harder and in honor of her and the short life she lived. We work to not mourn her, but instead to embrace her memory. To live, not for her, but for myself and live a life that i think she would have been proud of. I try to remember that she knew when she went in for that experiemental surgery, that she knew she might not make it out alive. I try to remember that courage and strength, and embrace that in myself.

She spent so much time sick, and in hospitals that she missed out on a good chunk of actually living in this world. I've strived to help make up for that. Every chance i get, I will jump in a van or airplane and have an adveture. Everytime I think of her and i hope she's proud of my adventures.

It breaks my heart that she grew out of Harry Potter and never read the final two books. She never got to see the last few films. When watching the final Harry Potter film, watching Harry march towards his death in the final few moments of the film, he is greeted by those who he lost along the way on his great journey. While watching I though of her and how she could never share that moment with me. I thought of her and all the other we have lost along the way and the tears swelled and i lost it for a few moments in that film.

I'll remember her like that in those final few moments. I'll remember coming into that Houston hospital room knowing the end was there, she must have too. I'll remember Ryan and I talking massive shit to her, telling inappropriate jokes and making her laugh one last time before fighting that final battle. I'll also remember that spark of rebellion and that smirk of a grin. She marched to the end bravely, and I hope when the time comes for me, I hope that when i march that march she'll be there to greet me.

She was a little brat. She was a ray of sunshine. She was my sister.