Jesus Loves Me, again!

Hello!!! Long time no see! I'm sure everyone missed me. As stated before, the manager of this Blog had a baby in July and things were a little.. well.. busy. But, the baby is getting older and she can get back to work!! 

Do you guys remember the video of Me singing "Jesus Loves me"? Of course you do, I'm adorable. 

I sang it again, and let me tell you, it was even more adorable than the last one. 

You see, something amazing is happening with me. I'm learning. I went from an extremely minimal vocabulary, a typical trait for a Rett Girl, to a growing, striving vocabulary. That makes me, once again, unique in my strain of Rett Syndrome. Isn't that spectacular? My family thinks so, too. 

Here it is. Me singing "Jesus Loves Me". I hope you enjoy!

 

ABC's

Hello, World! My family is currently trying to learn all that they can of ASL. One of the things they have learned is the Alphabet. I too, have learned my alphabet. So, Mommy took a video of us practicing together. When I am upset, sometimes signing the alphabet can help to calm me down. Here I am doing my Alphabet. I hope you enjoy!

Jesus Loves ME!

Hi, Guys! As you all know, I LOVE  to sing and learn Sign Language. My Mommy has been trying to teach me "Jesus Loves Me," and has been doing a really good job of doing so. She recorded one of our session. I hope you enjoy!

Happy Birthday to Who?

Happy Birthday to ME! Yesterday I turned 7! My family was so excited to celebrate such a joyous occasion.

My Mommy had a party for me, where my family attended with many presents. In my family, it does not matter how old you get, a birthday is important. Luckily for me, I'm a kid, kid parties are always the most fun. We decorated the entire house with beautiful decorations. Streamers hung from the ceiling and there was a large banner above our entry way. I loved my decoration! 

Mommy had a cake made for me that had the prettiest butterflies upon it. I could hardly stand to wait for the time when we would sing "Happy Birthday" and eat the cake. As everyone was singing I continuously stuck a finger into the frosting before licking the frosting clean from my finger. At the end, I grabbed a large glob and smiled at my success. Cakes don't stand a chance around me! 

We played "Pin the tail on the donkey" and laughed as my cousin Christopher tried to cheat, peeking below the small mask that was meant to shelter his eyes. All of the kids played outside, riding on our large tire swing and running around with joy. I really enjoyed our playtime together, even though we bicker when all of us our in the same room for more than 2 minutes. But, what would family be without a little excitement? 

I received many gifts to celebrate my birthday. All of them, a token of my favorite things. Shoes, so many shoes! Princess shoes, sandals, flip slops and flats, all covered in glitter, a gift that is definitely Me. I got an outfit, one things I love is clothes. I often sneak to wear other peoples clothes, so that is a gift worth buying for me. Oh, and a beautiful crown, fit for a princess. So, of course, the crown is perfect for me!

And, the gift that is MOST suited to me, a mirror. I LOVE to stare at my reflection while singing my favorite songs. I stare into car bumpers, the over glass, even pots and pans that have a shinny reflection. I love to sing and to see myself do so. A mirror is perfect for me. 

My family showered me in gifts, and above all, LOVE. It was a terrific day. 

Here are a few of the pictures taken from my party!

My Birthday Cake

Here I was getting a little upset from all the commotion.

I am about to strip my shirt so that I may wear my new outfit.

I am looking at my new outfit, deciding weather or not I should try to put it on.

My awesome sandals!

Me, trying to open a gift. It can be kind of a challenge.

Me, throwing the paper, after opening my crown!

Looking at my crown.

I am trying to open my gifts.

Wrapping paper is the worse! Don't you think?

Taking a sneak peak!

And my most favorite thing of all, my MIRROR!

Happy Birthday to Emma!

Update!

Hello, Everyone! I wanted to update you on my Barrel Race and let you know a couple of the things my family is doing. 

Well, the Barrel Race MIGHT have to be rescheduled, due to unforeseen circumstances. We're all pretty bummed, (BUT!) we know God will lead us to where we need to be. Obviously, August 30th might not be where we need to be. 

So, in the meantime, my family is busy doing other things. Because, either way, come the day of the Barrel Race they are going to need $1,000 for the winning racer. (If they don't have it then there is a good chance there won't be any racers.) Do you see their problem? 

They have been busy making bracelets and necklaces to sell online and they are even planning a Car Wash at the Silver Villa Bar and Grille, (that's where my Great Grandpa works!) to help raise enough money for the "pot".

If there is anything that anyone wants to do to help us raise the money, let us know! All help is appreciated and welcomed! 

Come on out!

Hi, Guys! I am so excited to invite you all to my Barrel Race. My family is putting it all together with the help of our Church. On August 30th, we are having the very first Rett Syndrome Barrel Race Fundraiser! My family is in constant contact with RettSyndrome.org, who think it's a great idea and they are sending me a ton of stuff to sell while we are there.

So, please come out and join us for the fun! If you are a vendor and would like to set up a booth, there is a $35 booth fee which saves you a 10x10 spot. If you would like to donate items to sell or for our raffle, let us know! All help is welcome and appreciated! 

We're trying to raise $1,000 for the Barrel Racing Pot, which is going to get the riders there. So, if you would like to donate towards that it would be greatly appreciated! Let us know! Thank you all in advanced!

What: Forever Emma Lou's Ride for a Cure

When: August 30th, 2014 

Gates open at 2:00

Exhibition at 3:00

Show at 6:00

Where: Cross Country Cowboy Church/4c Arena

2303 Dellview Rd

Cherryville, NC 28021

Taking the time

Hi, again! I thought I would take a moment to give someone some much needed recognition. 

My Mommy. 

My Mommy is the most brave person I know. Sure, no body is perfect. But to me and my Bubba, she truly is. It's not easy to be the Mother of a Rett Girl. And it's even harder to have a younger child that does not understand. My Mommy has a lot of bad things said about her because of myself and my brother, and still she is true and loving.

When all of this started, this Awareness Campaign, my Mommy's state of mind was different than it is now. Her life was full of stress and misunderstanding. Now, she is happy and has, like all of you, a new understanding. A new appreciation, if you will, of her life altogether. My family sees it in her, this change. Now, please do not misread this in saying that she has a new appreciation. My Mommy has always tried to do her best. And has always loved us the same as she does now. However, the twinkle in her eye when she looked at me before has turned to a flare. She is a woman with a purpose more important than her original role. A purpose that is being filled by Awareness, Hope and above all, GOD.

It's an amazing privilege to witness a change in someone. Especially, a change brought on by God. I know in my heart that this is only the beginning. There is greatness coming our way. A difference to be made. 

August 30th, 2014

What do you think of the flyers for my Benefit? My Aunt made them! She worked so hard on them. She even had to learn how to use Photoshop, just for me!

 I'm really looking forward to riding the horses and raising Awareness. It's like a big party just for me! My family is still looking for Sponsors, so if you sell a craft or would like to be apart of our Rett Syndrome benefit, let my family know! All vendors are welcome! 

You can contact my family here on the Blog or on our Facebook.

Facebook.com/Foreveremmalouandyou

Cross Country Cowboy Church

Hello, everyone. We are super siked to announce that we have partnered up with a church in our area in hopes to not only improve our relationship with our Lord and Savior, but spread awareness. They are currently helping us to plan a barrel race for August, where all proceeds go to RettSyndrome.org. How awesome is that? They have completely accepted Emma with nothing but love and understanding. How amazing are these people? It gets better. The Pastor, Daryl,  is going to contact other churches in our area to get them involved. We are truly at a loss for words when it comes to these people. Can they get any better? The answer is, yes. Friday night our family attended a Barrel Race at their arena, it was so much fun. Well, the second place winner donated all of their winnings of $72 to RettSyndrom.org on Emma Lou's behalf! And then, another racer donated $50!  Forever Emma Lou is already making a difference and let me tell you.. we couldn't be more proud of our accomplishments! When we get the permission from the racers that donated we will post them to our up and coming recognition page!

Not so good days

Hi, Guys! Sorry I was away for so long! My Aunt Tiffany, "Tattoo" is what I call her, had her baby boy last Wednesday. You see, she is the one that actually runs my blog (shh.. it's our little secret!). 

Any who, I wanted to let you guys see a little video of me when I get upset. Just so that you all have a slightly better understanding of my condition. 

In this video I finished having a staring seizure, a staring seizure is not like a typical seizure. When I have one I stare very hard into "space" for several seconds, as though I am concentrating extremely hard on an object. As the seizure ends I become pretty upset, lashing out at anyone or anything in my way. It's part of being a Rett Syndrome Girl. My family has to see this on a daily basis, sometimes several times a day. It can be very heart breaking for my loved ones. 

I hope this video educates you, giving you a new understanding of mine and other little girls situations. 

What are some things you and your family have to adjust to? Or even cope with? 

Let us know! We would love to hear your stories, so that WE too have a new understanding!

200

Hello, people of the internet! We wanted to let you all know how happy we are that our Facebook has received it's first 200 LIKES! I know that may not seem like much, but to us it is. I wish that we could put into words how important Awareness is to our Family. Thanks you all, again, for the love and support! Without you guys we wouldn't get too far, now would we? 

Tara!

Hello, Everyone! Meet Tara, my new Occupational Therapist! She is awesome and we all Love her dearly. Say "Hi!" to Tara.

She's so excited to help out with our new Awareness Group and lets my Mom and Aunt Nana take her pictures and even videos. Which makes things so much fun for all of us. 

Today we did a lot of cool things. I got to play with a slime ball that had been filled with a bunch of little beads and toys. I also played with puzzles and a few different toys. I love to sit with Tara on her lap and give her hugs. She is definitely my favorite to date! 

This is Me and Tara playing today at my therapy session.

I hope you enjoyed watching me play with my new friend Tara. I sure did enjoy our play time together, like I said, she's my favorite!

Brochures

Hello, Everyone! How goes it? I wanted to let you in on one of the things my family is doing to make a change in Rett Syndrome Awareness.

My family has been going crazy trying to come up with ideas to help spread Awareness about my disorder. You would be surprised how often my Mom and other get dirty looks from passer-by's in public because of the way that I am. For some reason, they seem to think that I am a product of disciplinary problems. You and I both know that is not the case. If more people understood that there are disorders out there that are as severe as they are then maybe they wouldn't be so quick to judge. It makes my Mommy very sad when people say things under their breath and give rude stares. I am special.. a beautiful being.. not a crazy child.

My family worked very hard on creating some brochures to take to doctors offices around our area. You might also be surprised to hear that when my Mom takes me to the doctor they have to "Google" my disorder. And often argue with my Mom about what it is. (Makes sense, right?). Now, they will have a little more information on my disorder and hopefully some of their patients will as well.

Take a look at our cool brochures! And let us know what you think!

What do you think? Cool, right? Do you see my awesome new logo? They worked so hard to make these. Now, it's just a matter of getting to Staples and making a ton of prints! 

What are some things you have done to make a change in this world? Let us know! We would LOVE to hear about it! 

The Simplest of Things

Hi, Everyone! First, Thank you for all of the support we are receiving here and on Facebook and Twitter. We're trying so hard to spread Awareness and help raise funds to find a cure. All of this Love is much appreciated and wanted.. so... Keep it coming! ;)

Having a child with any disability can be a challenge, trust me, we know. So, we wanted to show you all a lighter but more difficult side of raising a girl with Retts.

Now, normally it takes Emma's Mom's entire body to get Emma to brush her teeth, even when she lets her try on her own. She literally has to pin her between her legs to hold her down, which you will hear our Nephew/Camera man state in the Video. However, that's where the "Lighter" comes in today. Emma did not need to be pinned down, lucky for us. But, you still get a glimpse of how difficult it can be. I hope you enjoy this Sweet but Education video.

Thank you all again. We truly do appreciate all of this Love.

Smile.Amazon.com

Hey, Guys! Did you know that when you shop on Amazon you can donate to a charity? We just found this out and wish we would have known sooner! I know I love to shop on Amazon.com, because I can find everything I need at a great price. Now, I'll shop there even more so because they donate 0.5% of your order to a charity. Instead of typing in "Amazon.com" put "Smile.Amazon.com" and there you go! You can either choose from a slide of different charities or type in your own. Here at Forever Emma Lou and You, we have to ask for your support (of course), so please put in International Rett Syndrome Foundation. If you do, drop us a message and we'll be sure to let everyone here know what a great thing you did! It doesn't matter if it is for Rett Syndrome or not, charity is charity.. so let us know! Okay? Thanks, Guys!

P.S

Here is a link to Smile!

http://smile.amazon.com/

Uncle Jesse did WHAT?

Hi, Guys! I wanted to let you all know the awesome news! My Uncle Jesse, he lives in North Dakota, called their local News Station and asked if they would be interested in doing a story on my disorder, to help spread Awareness. Guess what they said? They said YES! They were extremely interested in spreading the word, which made my Mom and Family Super Duper Happy. Now, my Mom is waiting for the phone call from them for her interview, which should be any day now. Then, the word will have been spread a little farther! Isn't this exciting? Even though my whole family has been working on raising Awareness for such a short time, they've accomplished so much. It really means a lot to have so many supporters! Thank you all!

In with the New!

Hi, Guys! I wanted to share my exciting news with everyone. Now that my Mom is getting us settled here in North Carolina, I've been meeting a lot of new people. Such as, Hailey, my new Occupational Therapist. She's really nice, I let her hold my hand.

 She helped me color a pretty picture and even do some puzzles, which I enjoyed very much.

 Also, I got to go down a slide and play with whatever caught my eye.

She liked me so much that I not only get to go see her THREE times every week, but she gave me an awesome bracelet! I'm so lucky! If I continue to meet people like this then I'm going to have so many friends I won't know what to do with them. Which, is fine by me!

What are some Adventures that You and Your Family have been having? We would LOVE to hear about it!

I hope everyone is enjoying my Blog. Don't forget to go like us on Facebook at Forever Emma Lou. (There's a link at the top of this page.) And, keep coming back! We Love having you!

About Me

Hi! My name is Emma. I am almost 7 years old and have a pretty awesome life (I mean, seriously, look at how happy I am ^). However, I am forced to live with Rett Syndrome. I'm sure you're all wondering what Rett Syndrome is, so please, allow me to fill you in on the facts.

Rett Syndrome is a X-Chromosome mutation that affects little girls almost exclusively. Boys lack an extra X-Chromosome, resulting in miscarriage, still birth or early childhood death. Rett's causes regression where children should be progressing. Such as, mobility and language development. This is where I am different. All the other little girls my age that suffer from Rett's are already in wheelchairs or close to being so. I am still running and playing. I still regress, just not as quickly. It's a very complicated situation, I'm sure you can understand why. Not only is Rett's currently incurable, but I have the most unique strain of it currently to date.

So, my Family is trying to raise not only Awareness but Funds to help find a cure for all of the Rock stars out there that live with Rett Syndrome. They are confident that, eventually, we can get there and save thousands of children for generations to come. Please feel free to Follow us on our journey to Rett Syndrome Awareness (with crossed fingers) and it's Cure.

Making a difference

Hello again world! Emma here, asking a huge favor. I know we've only just met and all. And that my blog is still super simple. But, could I ask a favor? When you stop by please Click on our "Follow" links and "Join this site" bar on the right of the screen. If I know people are coming to see me I'll feel a lot better, even though we haven't really gotten too far with our Twitter and Facebook. But, I promise we will. It means so much to see my page views growing, so, Thank you!

Enough of that, though. I thought I would let you in on something that I think is pretty cool. There is this website and you can go there and donate a little bit of jingle towards Rett research. Isn't that awesome? I love it! My family is trying to find a way to add a donation button here on my Blog, so that you all don't have to go through all the trouble of searching for the link. Remember, sometimes the only thing standing between you and a cure is.. money. Isn't that sad?

So, go over and donate! Are you still here? Oh, well it might help if I gave you the address, right? Here you go!

https://www.rettsyndrome.org/get-involved/donate

Don't forget to Like, Follow and Support my blogs. Right now, getting the word out about Rett's is our top priority. So, help out! 

Oh and one more thing! If you do go and donate, let us know! We'll be sure to let everyone know what a generous and caring person you are, right here on Forever Emma Lou. I mean, you are helping to change the world. Why should something so important go unnoticed? 

Buns (hotdog buns, that is) and the Sun

Happy Father's Day, World! Did everyone have an awesome weekend or what? I did, and I cannot wait to tell you all about it!

Can you guess what I did? I went SWIMMING for my favorite cousin's High School Graduation party! It was so much fun. We got to swim in my Aunt Shannon's huge in the ground swimming pool, eat yummy food and have chocolate cake! 

Do you see the hand print where it is supposed to say "You Did it, Meow"? Guess who did that? You got it! It was most definitely, Your's Truly! Was I sorry? No. No, I wasn't. It was hilarious. I have no regrets. 

Here I am interacting with my Aunt, who is obviously the most entertaining person on the planet.

Here I am with my Great Aunt Shannon a.k.a Aunt Nana. She had recently asked me to have a seat for a few minutes before this picture was taken and I got mad at her. Well, when I was aloud to get up she asked for a kiss. Remember how I mentioned something about being mad? Yeah, no kisses for her. This is what she got instead. As you can see by the image above, she loved it just as much. The beautiful lady sitting behind us is my Great Grandma.

This is my Aunt Tif. She is obviously holding me hostage. No, seriously, look at me. I look miserable. She's always trying to hug me and kiss me and love me. Ugh! Don't you just hate Aunts? Yeah, me neither.

In this image, I am doing one of my most favorite activities... SWIMMING! I could swim all day long. I almost did. I spent hours in the pool and it was awesome. Within minutes of exiting the pool and going inside (about 2 hours after this photograph was taken) I fell asleep. I sure was pooped.

The party was a blast. There was great food for me to steal, water for me to paddle in and other children for me to play with. I also got to meet a few new people, which is always exciting for me. So, all-in-all, it was a great weekend. I truly had a great time.

What did YOU do this weekend?