Wednesday, December 28, 2011

Its hard.

Sometimes all you can do is hope.
When you’ve hit the cold gray stones of rock bottom and nothings going right, all you can do is hope.
When life takes a wrong turn down that bumpy dirt path instead of the smooth paved highway, all you can do is hope.

When you look at us you see a family.
Were strong like a brick wall, bonded together by the cement that is our genes.
You see the maniac parties we throw and the good times we have together teasing and giggling.
But what you don’t see is the fear that soon we will be one less and soon we will be making plans to place her little body under the green grass and warm dirt.

When you look at us you see a powerful force, as strong as the allies in World War II.
Four cousins,:all brunettes, one brown eyed, and three blue, trying not to be afraid.
All the aunts and uncles, holding their fear coated breath but pretending to be strong.
The grandparents, wise and caring but knowing that not everything works out in the end.
But what you don’t see are the nights that our force is breaking down, sobbing until the morning.

Were not like other families because we've been cursed.
Cursed with the shaking, the aching, and the little girl taking.
Its not fair to us and its not fair to her but there's only one thing that we can do.
Hope.

When her frail body is sitting in your lap, limp and wordless
and all of a sudden she starts convulsing, and loses control
and its taken over by the electricity in her brain, there's only one thing you can do,
Hope.

When she turns five years old and has to be fed her birthday cake through a tube.
Or that moment that you realize that she wont ever say those three words that everyone longs to hear 'I love you'
And when you become aware of the fact that shell never race towards you and jump into your arms because shes strapped into a metal chair with big black wheels, only one thought comes to mind.
Hope.

When she has to move her eyes to the pre-programed pictures on the device made to let us hear her thoughts just to “say” one simple word in the voice of a woman ten times older than she is,
or when she cries for hours on end and you ask why with no response but the salty wet tears rolling out from her eyes.
And even when you’re awoken at two am to hear her precious infectious giggle for no reason except for the fact that her brain doesn't work, you're thinking one thought,
Hope.

We hope for the cure, spending countless afternoons helping to fund it
so we can have her back. So shell be free from the trap we call her body.
We hope for one more day, and instead of looking to the future we look to tomorrow
and hope she makes it through the night and keeps up with this fight.

We do the things for her that she cant do for herself.
The talking, the walking, the eating or even the greeting.
Were stronger than we look and more fragile than we seem.
But we all have the same reason to live, Emma.

Wednesday, December 21, 2011

Monday, December 19, 2011

When you come undone

newest addictions? Undone by Lifehouse and Gonna Get Over You by Sara Bareilles.. 




This post is now officially dedicated to Nathalie Taylor Munn. Shes the one thats been there through it all. Shed never leave me hangin (unless she was in church) If i get mad, she gets mad, if i get sad, she gets sad. shes my vineyard sissy: 

my Spaghetti dinner planning super hero (we obviously got a lot done this day..NOT):

and my fundraising friend: 

i love you dear, thanks for always being there<3
p.s. someday im going to write a whole post in spanish

Saturday, December 17, 2011

Dear Santa,

every year its the same thing. maybe next year shell take those first steps, maybe next year shell say I love you, maybe next year shell be seizure free.


but its next year and im still waiting for her to walk over and climb in my lap, still waiting on the love, still watching those seizures.


next christmas shell open those presents, shell knock ornaments off the tree on PURPOSE instead of involentarily, next christmas there will be a cure.


but its next year and were still ripping the paper for her, the movements are still uncontrolable, and there is no cure.


so when is the last year? when do we get the perfect christmas? the one without the special chair, the one she gets to do things herself. why cant we have that? 

Wednesday, December 14, 2011

when the sadness comes round.

tonight i dont have the words to say because a girl my age has passed away because of Rett Syndrome. you realize that makes FIVE girls added to the Rett community in heaven within TWO months? Five girls that never had a chance to live up to their full potential, five girls that wont see their loved ones untill they make to to heaven themselves. FIVE girls laid under the ground. FIVE. 3 of them under seventeen. 


tonight my heart aches for the cure. it seems so far away. "we're so close" the doctors say. but everytime a rett girl dies it seems to get further and further away. with every sad remark about a hospital or a death, we take a step back. 


tonight i cant say anything to make anyone happy or the world a better place because tonight i am sad.

Tuesday, December 13, 2011

truly youly, beautiful.

http://operationbeautiful.com/


because everyone is perfect in their own mixed up way.
everyone is beautiful no matter what people say.

Monday, December 12, 2011

hate.

i wrote a poem. it goes as followed:


Giving up.
Giving in.
losing to my fate again.

Breaking down.
Losing hope.
Cant get off this downward slope.

The days come
the hours pass
but my heart just breaks like to thin glass

my smile shatters
like porcelain
while my heart continues caving in

an empty hole
take a place in my chest
for all the girls that have been laid to rest.

the end.

know why? yesterday a young woman named Caitlyn died. you know how old she was? twenty. two-zero.
know why? rett syndrome. thats right. rett. syndrome. 

that means (for most my readers) that your life is half over. and not only that but you lived your whole life trapped. 

this morning a girl only 15 years old is going home. to die in her own house. theres nothing more the doctors can do except send her home and pray she pulls through one more time. but the chance is like 3%.

i just want a cure. no more suffering.

its so heart breaking to read of the girls with seizures and pnemonia and even the unknown.

i just want a cure.

Sunday, December 11, 2011

Happily ever after?!

more like happily NEVER after! 
Lately ive been looking through old pictures. its funny. we were soo cutee. but cute comes with nieve. Back when we thought the world simple and great. funny how things change right? i mean look at us:
(Rachel, Kelly, Sarah)

Its like back then things were perfect. it didnt matter if you kissed two different guys:
                                (Rachel, D*.)            (R*. Rachel) 
because there was no such thing as a slut or a whore.

The littlest member of our dalton tribe was still completely healthy:
(Dad, Poppy, baby Emma, Uncle markThen (Rachel, Sarah, Emma, Kelly)                   
Bottom row: Rachel, Kelly, Sarah)                              

Back when the smiles were genuine.
if that doesnt say adorable then you should get your head checked.

We were just a bunch of kids having fun 
Instead of some boys and girls forced to hang out together. 

It was true friendship. Nothing fake. Real laughs. real smiles. There was no plastic.

Tonight i feel like i just want to go back to those times. Everything was right in the world. It was like nothing could ever go wrong. Tonight im sad because im watching baby beaner grow up into this scary world of war and hate. On January 11th youll turn one bean. doesnt seem possible. Between the accident, gastro, surgery, and the first 3 months of life in the hospital it seems like 1-11-11 was just yesterday (yes that is her real birthday) and as miss Taylor Swift says "Never Grow Up" & "Stay Beautiful"
Im not really sure where im going with this post i just kind of said stuff. I miss the past but i know the futures good. Its just hard to watch bean grow up in a world of the kardashians and botox knowing that someday she might feel the same way i do sometimes. i dont think anyone should have to feel that way.

I suppose thats it for now!!! much love little doves! 
~Yours Truly!

P.S. this songs my life currently: 

P.P.S (or pss whatever it is) Thanks nat for showing me said song!

(ppps or psss: names are abbreviated for protection purposes!
so the holidays are nearing. for everyone else that means celebration, presents, happy, family, love, lights


. and dont get me wrong it means all those things to me too its just different. To know wth im talking about when i say 'the monster' i guess i should explain to you a bit about my smallest first cousin emma. the baby on the dalton side. emma was born normal and progressed along. she used to sit up and hold things, em used to call her sister sarah 'abba' but now she cant say that. because the monster stole it. The monster i speak of is rett Syndrome. rett is a nuerological disorder mainly affecting girls. its a mutation on the mecp2 gene on the x chromosome. can you tell how many times ive said that? too many. i dont really feel like explaining the monster anymroe and if youre reading this you probably already know what it is so im just gonna go on.


How do you know when the holidays begin? the first snow? the christmas lights on houses? what about those commercials "BUY THIS and have it shipped just in time for christmas!!!!"


the commercials like this with the little girls like this that dont stop talking about what they want


and you know what? 


i hate that little girl. all i want for christmas is for em to be able to do that. she loves dora

i just want her to have the normal life. a week without seizures. a day without pain, emotional and physical.

i hate that little girl because she gets that. What did emmy do to deserve this?

the holidays make me made because of that but i also love them cause i get to spend time with the family. My family full of weirdos. like last night my kitties (bert and ernie)(also known as the fuzzies) were laying under the tree after we decorated it. 

so i decided to get on the floor and lay with them. then kelly came down. then mom. then aunt nina. and then uncle derb decided to take a picture on my phone(hes cellphone challenged so this took time) and send it to my grandma (shes in florida taking care of my aunt who had a heart attack a couple weeks ago (COMING HOME MONDAY!!)) and pretty soon we ended up like this:

That is a family of class right there. 

Saturday, December 10, 2011

the start of a wonderful relationship. Me & My Blog

Once upon a time there was a girl named Rachel. she lived in this tiny town called SL where "its flanel friday everyday" and "we dont have snowdays for snow we have snow days for when its 40 degrees below 0". She valued her family, friends, and cell phone. She wondered if it was normal to refer to herself in the third person like this? probably not so ill stop. WELL. this is the blog i shall come to to vent when im feeling down. itll be like therapy except blog form! sounds nice right?


SOOO my names rachel, im 15, i live in el saranac lago, my baby cousins got Rett SYndrome. My other baby cousins got intestinal problems, a couple of my aunts have had heart attacks, my uncle and grandpa both died of CANCER. i cant eat carrots.


MY LIFE IS SO GREAT!!!


wanna play the 10 random fact game?!
1. i like music. actually beyond like music.

2. ive sworn off boys till senior year (SINGLE TILL SENIOR BABBYYY)
3. i like to write letters to people ill never send and ill probably end up posting 99% of them on here.
4. my sister is mean. her names kelly.
5. i like to quote people and songs
6. my life can get kinda HECTIC sometimes...well a lot of times.
7. im gonna grow up to be a nun on the lovely island of Martha's Vineyard
8. Right now im doubting anyone is gonna read this besides Nathalie (HI NAT)
9. Im scared to ever drive because my cousin got in a huge accident when she was three months preggers with her daughter (who i consider my cousin) and she and bean almost died so im pretty afraid.
10. i run this little organization called bracelets for Rett at braceletsforrett.blogspot.com because my goal in life is to CURE RETT SYNDROME!!!!!


sooo yeah. im gonna go for noww but dont worry. ILL be back!!!!