HELP!

I need a favor, this doesn't really have to do with the Bracelets for Rett organization but i need YOUR help! As family and friends of girls and boys with Rett Syndrome the term "going down without a fight." means SO much to you, right? We'll that is exactly what we are doing here. You see my name is Rachel,  my sisters Kelly, and my best friend is Nathalie. Last year we held a spaghetti dinner for Emma and Rett Syndrome during the spring. This year we were trying to make it an annual event but at a different place. The place we want to have it would be asking for a hundred dollar rent. To pay for this hundred dollar rent we would want to hold a dance in the town's middle school Cafeteria  for the middle schoolers to come to and have a fun night. We would keep a hundred of the proceeds and the rest would go to Girl Power 2 Cure for OUR CURE! 


We went to the middle school principal to ask permission, but. We were denied. We fully understand that it isnt her fault and shes simply telling us the rules. no dances not school related and everything. but really. This little girl attends the elementary school just down the stairs. In 4 short years she will be going to this same school thats denying us the right to HELP HER GET HER VOICE! is that not school related?  We simply want aloud the use of the cafeteria for one friday night. 


We cant get what we need without you though. we are only three teenagers. Without your help we are being deprived the ability to help this little girl and millions like her. We deserve to have our voice be heard while trying to free hers.


How can you help? Comment, share, email braceletsforrett@yahoo.com. ANYTHING. but without youre help we wont recieve the tools we need. and trust me. we arent going down without a fight. 


Nathalie says:


"Please take the time to read this. My name is Nathalie and I'm 13 years old. I am in 8th grade at the Saranac Lake Middle School. I'm not going to talk to you about that though. This letter is about Rett Syndrome. Rett Syndrome is a form of autism that affects girls. It deprives them of walking, talking, and using their hands. Imagine duct tape over your mouth, glueing your hands together, and having both of your legs broken. Try and imagine how aggravated you would feel. On top of this, you would have seizures daily and your spine wouldn't be straight. You wouldn't be able to say if you were hungry, where you wanted to go, or if you were in pain or not. Little girls with Rett Syndrome are completely trapped. 

Kelly and Rachel's little cousin has this awful disease. There's no cure. Poor little Emma goes day by day, trapped in a world where people think she's stupid when she's really more intelligent than practically any other kindergartner out there. Today, Kelly and I went to our principal to ask if we could hold a dance. All of our money from the dance would be donated to the non-profit organization girlpower2cure. Much to our dismay, we were told we are not allowed to have a dance to raise money for research for a cure. I understand this is the school cafeteria we're talking about, but we SERIOUSLY can't use it for a dance? I also understand there are standards for dances, like they have to be school-related. Emma ATTENDS our school! I don't see how that is not school related. All we want to do is raise money for this precious five year old, yet we're not allowed to. I also understand this is not the principals fault. All she is doing is telling us the rules, and doing her job. I don't blame her one bit.
If your little daughter was born with this chromosome mutation you would do everything you can too. Seeing them suffer is not right. If you see this, we want to have a dance. And if you want to learn more about Rett and Emma, go to girlpower2cure.org
Do it for Em."

The R-word...poem style

For English were doing a poetry unit. Its very structured, like a couple nights ago we wrote soapbox poems. Soapbox poems (according to my english teacher) are used when you want to complain about something or get it off your chest when you get really annoyed with something. We had a few requirments for the poems like at least 15 lines and a couple poetic devices but other than that we were pretty much free. So. I wrote about the derogatory use of the term retarded. i also wrote about that on THIS post but its pretty much one of my favorite things to rant about. I didnt really think to much of the poem until we were put in pairs and when the person i was paired with said something along the lines of "Wow. Thats really powerful. You should publish it or something." and i got to thinking where in the world would i publish such a poem until i remembered YOU guys!! so i decided that id publish the poem HERE! so here is the poem:

How would it feel to be degraded, deflated?

To be stupid though smart

or dumb with a big heart?

How would it feel to be an insult to the world?

To be hated for something you cannot control.

After all those years would the hurt take its toll?

What if you couldn't stick up for yourself?

You were trapped in a bubble with the world outside

listening to people make fun of your life.

What if you couldn't shake off the pain

and the word goes around and gets under your skin.

The only justice that's served is the words of your kin

Would you be able to handle the crack of your heart

When you get bullied with that word from finish to start

and they think it means nothing but you no longer feel smart

Your world is like rock bottom with no where to hide

it doesnt mean stupid clueless dumb or scarred

it simply means the monster inside. Its Retard.

The End. 

it still needs some work (be free to suggest changes) but i felt you guys would enjoy this poem because 1) its about a really good topic and 2) i wrote it with our cure in mind. One day when the cure for Rett Syndrome has been found and all these girls (and boys) are living there dreams theyll also be sticking up against this  cause too. but there can only be a cure with your help. buy a bracelet for only FOUR DOLLARS  by emailing braceletsforrett@yahoo.com and share this with your friends! 

To 2012!

I was talking to a friend yesterday and we were talking about 'normal.' What is normal? well, its you're everyday life, the things you do, feel, and say, on a regular basis. normal is NOT something that blends in with everyone else. Normal is not a fantasy world on TV, its YOU.


You're probably wondering why i'm talking about 'normal' and what it has to do with Rett Syndrome, but in a Rett syndrome family its easy to feel abnormal. Trust me, when you're 15 and know all about chromosomes and seizures and special needs galore its really easy to feel out of place in a society obsessed with obtaining perfection.


I should care about hair, makeup, boys, surviving high-school  and popularity, but instead i am here writing to you  about the abnormalness of my normal situation. the fact that i care about Rett more than i care about what people think of me makes me stick out at school like a sore thumb. i'm imediatly labeled abnormal because i don't fit in. but i bet if you looked at the lives of those other kids you would see that they are similar because they don't have the perfect life either. 


NO ONE is abnormal because everyones normal, is normal.


So in 2012 i will help achieve raising awareness to the Syndrome that makes me stand out. i'm going to bring it into EVERYONE'S normal until someday its cured. i'm going to make it so when i type "Rett" into the computer there is no little red line saying i misspelled something. and you can help by simply buying a four dollar bracelet. email braceletsforrett@yahoo.com with your two favorite colors and well get back to you! 2012 is YEAR of the CURE!


"Everybody knows there is no such thing as normal. There is no black-and-white definition of normal. Normal is subjective. There's only a messy, inconsistent, silly, hopeful version of how we feel most at home in our lives." -Tori Spelling

Christmas: Dalton style

theres a saying ive heard out on the rett net. it goes something like this "With Rett Syndrome, nothing is ever normal" and that includes Christmas. Every year we spend Christmas Eve at my grandparents all together discussing where Santa is, the giant nameless present under the tree, sledding, all those 'typical' things but in an untypical way. Of course its always done with lots of giggles:

cause what little girl doesnt like an early present?  Now if only she could tell us what she thinks with words.

we spent like 2 hours trying to get some good family pictures resulting in some good ones:

now i just wish she could make one of those crazy faces. 

but in the end Rett Syndrome didnt get us, in fact Em actually opened one of her own presents!

but theres still the lingering thoughts of the untypicalness of our Christmas celebrations. and i hope one day we can celebrate Christmas without worrying about meds or seizures. and with your help, one day we WILL! there are tons of girls around the world suffering from Rett Syndrome. Tons of families going through the same thing. with the purchase of a Bracelet from bracelets for rett you could help get a 'normal' Christmas for millions of familes. just email braceletsforrett@yahoo.com to get your own! 

Next Christmas

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 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?

Because of Rett Syndrome.

But next christmas there will be. We will have our cure. With YOUR help.all it takes is ONE bracelet for only FOUR dollars. so order today because research is getting closer and closer to the CURE for Rett Syndrome. 

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

The Holiday Spirit

just HAD to share this! theres a boy that sits at my lunch table, hes the quiet do homework all period kinda guy. Today something completely unexpected happened though. Today after chemistry this boy came up to me and said "Guess what?!" so i said "what?" kind of weary of what he was going to say. then he said "I got my whole church to pray for youre little cousin Emma yesterday!" 


i was so touched by his small little action and i honestly didnt know how to thank him enough. All day everyday i go around thinking about how people dont care enough about special needs or cancer and stuff but his small gesture changed the way i look at him and some of the people in my school. He proved to me that not all the guys in my school are completly obnoxious and that some people are more than what they seem. So thank you, for making these last couple days of school before christmas break a little more bright.

Change.

Do you have one thing that whenever you see it, you smile?
One dress that when you put it on you cant help smile at your reflection?
For me that one thing is one song by one AMAZING artist (whom i absolutly adore and can sing every verse to every song of hers) named Taylor Swift. The song? Change.

let me start off saying that i have taught myself this song on guitar and now im learning it on the piano and its given me a lot of respect for TSwift because it is NOT an easy song. Ive probably learned more than 70% of TSwifts songs on guitar but for some reason when i first heard it this one got to me. Lets disect it, shall we?

Verse 1:

 And it’s a sad picture, the final blow hits you

Somebody else gets what you wanted again and
You know it’s all the same, another time and place
Repeating history and you’re getting sick of it
But I believe in whatever you do
And I’ll do anything to see it through

now instantly i was just hit with wow thats my life. Some moments im fine and then i realize something little and its just like..wow..

and the 'repeating history and youre getting sick of it'? Last night Rett Syndrome took a young lady only 20 years old. A while ago the monster gave wings to TWO girls on the same exact day. only 16 and 30. Tonight there is a girl only 15(?not positive) that is fighting for ONE more day to stay with her family. its a pattern. its 'repeating history' and I for one am getting sick of it. BUT i still believe in the cure. and im going to do everything i can to see it.

Verse 2:

Because these things will change
Can you feel it now?
These walls that they put up to hold us back will fall down
This revolution, the time will come
For us to finally win
And we’ll sing hallelujah, we’ll sing hallelujah

because the cure is near. and I KNOW IT! someday the 'walls of all their bodies will fall down the reveal the girls trapped in there for so long. i promise you. and when it does there will be MORE than a celebration. 

Verse 3:

So we’ve been outnumbered
Raided and now cornered
It’s hard to fight when the fight ain’t fair
We’re getting stronger now
Find things they never found
They might be bigger
But we’re faster and never scared
You can walk away, say we don’t need this
But there’s something in your eyes
Says we can beat this

this verse is prettyy self explainatory. my favorite lines are "Its hard to fight when the fight aint fair" and "but theres something in youre eyes says we can beat this" BECAUSEEE: the first one makes me think of the why? why did these girls get this horrible disease? what did they do? and makes me realize the unfairness of the whole situation. the second one is because everytime i look in emmas eyes i see hope. i see the strength that she has and how even in the toughest times she still believes her cure is out there. her eyes tell me to never give up.


then its the chorus that i already explained up there^ thennn


The bridge:
Tonight we stand, get off our knees
Fight for what we’ve worked for all these years
And the battle was long, it’s the fight of our lives
But we’ll stand up champions tonight


the bridge just makes me think of the day of the cure (soon.). i cant even begin to think of how amazing that day is going to be. 


Ending chorus:

It was the night things changed

Can you see it now?

These walls that they put up to hold us back fell down

It’s a revolution, throw your hands up

Cause we never gave in

And we sang hallelujah, we sang hallelujah

Hallelujah

for some reason this song just gives me so much hope. it reminds me what bracelets for rett is all about. the cure. and who its for. the girls (and a couple boys). It also makes me think of the benefit (rockin for rett 3.0!!!) because its the song of the slide show

you wanna buy a bracelet? only 4 bucks. in any two colors you want!