lmdrfl19

Syndrome
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2012-01-17 10:13:20 (UTC)

Letting it all out

Tomorrow I have another doctors visit. I broke down finally, let the tears just drip down my cheek. Drop after drop, eyes swollen and red... I just let it all out. I've never been like most kids, teens, young adults, whatever you prefer to call us. I grew up always being carefully cradled in mothers arms. From severe asthma, to glasses, to exzima. Its a never ending medical list of problems that if feel have kept me from being who i know i really can be and who i know i really am. Deep down inside im nothing but a whimp. for weeks now i have been wanted to update my facebook status to "Today starts the day, today starts a new me, It's time for me to become the bad ass i know i am" yet im too afraid too. everyone only sees sweet little lily, the sweet little innocent girl who is sheltered from ever being able to do anything. I wanna explore the world, or at least the united states. I wanna drive for hours across the US and stopping at every city along the way. meet new people see new things. I have never seen the statue of liberty. I wanna sing on hollywodd bulevard and have people look at me like im freaking crazy but deep down inside i know they're thinking "damn that girl can't sing but she has some balls" I wanna be the kinda girl that my children will wanna hear about one day. When im old and crusty i wanna blabber on about how freaking awesome i was and how i lived before i died. thats all i wanna do. live. Im tired of the needles and tests and mri's. yeah nothing has happened since that day. but not everyone has gone through what i have. they havent felt the pain of a needle being pierced though your arms, stomach, hands... they haven't experienced MRIs and 6 hour waiting areas in the hospital, hoping that the test came out negative. Praying that everything is still ok. Hvaing to explain in high school to every teacher that you ve had seizures and having to educated them and your friends around on what to do if i had another, what to do incase something were to happen to me. Try explaining to people why I can't drink, why i can't smoke. Not that I would do any of those things to begin with, but just the fact that i have to explain to peple that there is something wrong with me and after almost seven years the doctors don't even know exactly what happened or whats wrong? how do you tell some one.... HI MY NAME IS LILY, I HAD AN EXTREMELY RARE BLOOD DISORDER AND ALMOST DIED.. NOW THE DOCTORS HAVE NO IDEA WHATS WRONG WITH ME, SO I NEVER KNOW IF TOMORROW WILL BE THE DAY I DIE... people say its been years since anything has happened. But their wrong, it happens every single day. Every single day I close my eyes. touch the tip of my nose. Open my eyes and picture that damn mural in the hospital room. It was of an ape holding a teddy bear with his arms hanging off a tree branch. I remember when i left that hospital I told myself "I hope i never have to see that damn beautiful mural again" But everyday i prepare for death. I say my "I love you"s my "Be careful"s... and i turn and look at myself in the mirror. I see someone completely different than who i though i would grow up to be... I pictured myself to be short, healthy, fit, out going, majoring in teaching or music. I conform myself to the life i have been given. but tomorrow, tomorrow is a new day. I will never be a "new" me only a better me.


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