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! 

Fairy tale endings

Once upon a time there was a little girl. She loved to run, jump, swing, but her favorite activity was talking. She had words in her vocabulary with no definitions, talked non-stop, and was constantly shouting out demands to her mom “Bring me this! Do that!”.

Wait.

Stop.

Is that how it really is?

Its more like this:

Once upon a time there was a little girl. She was confined to a chair because of legs that didnt work. She liked to watch the other kids and loved when they made her feel included but it wasant enough. She talked with her eyes but her mouth didnt work. She couldnt help cry sometimes because all she wanted was to be out of her body.

Sounds more like it.

I have a challenge for you all.

Duct tape your hands together and sit on them. Tie your legs together and dont use them whatever you do. Put tape over your mouth. Dont say a word. Now have someone push you into a room filled with people having lovely conversations. But you cant say anything. You cant make any guestures to show theem how you feel. Now have someone put something you love infront of you. Just sitting there, but you cant touch it, you cant even reach for it. Now along with all that youre spine slowly curves, you have seizures, every hill seems like a mountain.

Frustrating right?

This is how girls with Rett Syndrome live. Every day. Every hour. Every second. Can you imagine?

Now imagine living your life like this then suddenly: you can walk. You get to go anywhere you please by yourself. You can talk. You no longer sit in and listen to the conversations around you, youre PART of them. Youre perfectly healthy, seizure-free, and have conquered the war of your past life.

This is what Their lives could be like when we get a cure.

So help free these girls from their bodies. Help turn this fairytale into reality.

Purchase a bracelet for only FOUR dollars. Email braceletsforrett@yahoo.com

the R-Word

The last couple days i've realized something. while spending time on facebook insead of in school because my muscles decided they hate me, ive realized that a lot of kids dont realize how good they have it.


on my regular old account of a 15 year old saranac laker, a status that gets 63 likes is from one of the populars and about their life being horrible or a depressing quote.


on my Braceletsfor Rett account, friends with a bunch of family memebers of girls with special needs, a status that gets 63 likes is about someones little girl coming home after a month at the hospital or a six year old finally taking one step independently.


so it got me thinking about the things people think about and what they say, which brings me to the word 'retarded' now i know youre probably thinking "how in the world can that make her think of that?!"


In my high school people throw the R-Word around like they use the word "the" and every single time i hear that word it stings. It makes me so mad. sometiems if its not someone huge and intimidating that could step on me and id be dead that i say something. usually they try and make the argument like "i didnt mean it in  that way!". well guess what Saranac Lake High Schoolers? it doesnt matter.


did you know that on dictionary.com the definitions of the R-Word is "to make slow; delay the development or progress of (anaction, process, etc.); hinder or impede."


do you see the word 'stupid' in there? because i dont. 


i know that emma is not retarded. i KNOW she knows everything going on around her. in fact shes the smartest little five year old i know! but i also know that the R-Word is an evil, disrespectful, degrading word. 

being around someone with disabilities has made me realize that everything you say effects someone. watch this video and tell me that you arent affected by it. 

Somedays i just want to get on the announcements and say "to all the kids here at Saranac Lake High School, how would you like it if everytime you said the rword the word 'handicapped' came out instead. "youre SO handicapped!" "shut up handicap".

does it still mean stupid? didnt think so. 

if this post has inspired you to change your vocabulary go to http://r-word.org/ and take the pledge to help eliminate the word retarded.

i know this post doesn't have a lot to do with rett syndrome but it needed to be said

wanna buy a bracelet?!?!??!?! help raise money AND awareness. get one and show people and tell them where you got it and what its for! 

email us at braceletsforrett@yahoo.com with your TWO favorite colors and wrist size (small, medium, or large)!