Sunday, August 19, 2012


And the 17th o August arrived! The most important date in my life, the day I was born! This year the theme of my big event was Pocahontas: Just around the river bend. And that is so right. My lie is a journey through a river, and there is no telling what lies just around the river bend... The only certain thing is that all dreams are out there... waiting to come true! But first...

On Friday was my last day of camp. Yes, the six weeks went in the blink of an eye... The last two weeks were all about things... so the focus was on things around the world. For the show, my group performed a demonstration of yoga. I used my triangle to signal their beginning.

 After hearing my cue they all started to perform the different yoga positions. It is amazing to actually know that my peers do follow instructions (when they want). Mommy held my arms moving them so I could perform the moves as well.

Of course at some points I had to take a break. Some moves are like... you gotta be kidding! But the important thing is to try and focus. And I do that, no matter what.

Last moves were done, and I was about to go off the stage when I got called back in... Wow, I thought... Was I that good with my moves?

As I rolled in, everyone sang the birthday song! Awww... At first I was like... Erm... What is going on? But I catch on fast, and I was moved yet again with so many people being so kind to me.

They gave me a big basket filled with artsy stuff. Even a dinosaur head! Oh, my! Kai-lan would be so jealous! That was completely unexpected, and very thoughtful. I rode rough waters to be at Camp this year, and succeeded thanks to the understanding of the people in charge of it. I had fun, but I know Mommy had plenty of stress about it all... I am so grateful Mommy makes things happen. And I am even more grateful for people who follow through with the promises they make. Thank you, Newark Museum! What you gave me is priceless. And after that big "choke" that means thank you, I rolled away.

I must mention my favorite shows... The kids with the rave ears singing "Be our guest" were absolutely awesome.

And these kids danced to the rhythm of Hindu music, maybe Bollywood? I love, love, love the vogue!

And that was a wrap. Here I am ready to go back home... looking forward to my own celebration! To my surprise nothing happened at night... I expected at least a cupcake with a candle, but nothing... I found that weird, but moved on not so happy about it (after all I went to sleep at 7pm)!

I woke up early on Saturday... but apparently one of my parental units decided to actually go to sleep when I woke up... Daddy took care of things, OT Roze came in... And then in the middle of the afternoon Mommy appeared to congratulate me yet again... This time she asked Daddy to "get me ready"... And he brought my Pocahontas costume! At least that in itself is awesome.

But the big surprise was when he took me out to put me in the wheelchair... The whole wall had Pocahontas and Grandmother Willow, and there balloons and presents! And the music from the movie was playing in the background!

They also had closed the space so the A/C from the bedrooms would also fill the room making it comfy for me... And there was also cake! I got instant happiness.

I knew I was not crazy... Mommy and Daddy celebrate everything about me, it was not possible they would let my birthday fade away without singing and cake... especially this one. It's my 5th birthday! Imagine... 5 years with this insane family...

Time is going so fast! I remember my first birthday... I dressed up like Ariel, the Little Mermaid... What a difference! How much I have grown! One thing is the same, I rock any outfit!

I love this. I love all the attention. I love feeling so much love around me. If this is as good as it gets, it would not matter... I have many things to be thankful about. I have everything I need, and I am happy with all I have. Some people make a big mistake being sad for me. I do so much more than many kids my own age... I am very proud of everything I can do. Lookout world! I am just getting started!

So... Mommy and Daddy called my basic people and so my Grandma Millie skyped, and Great Great Grand Aunt Gladys and Godfather Steve were in the phone. Ready, set...

Sing! As usual the birthday song came in English and in Spanish, featuring Gladys being always behind while singing... It would not be the same without that... call it tradition.

Daddy held the cake in front of me, and so I got ready to blow the candles! Five candles, and the number five!

Now... thinking of the big wish that I want... Thinking and wishing hard... Ready to blow the candles... Here we go!

May this wish come true... What I wished for? As Cinderella says, a wish cannot be told... You hold tight to it, keep it in your heart, and work for it... and then in the end your wish will come true!

So, cake part is over and in comes the part of family pictures. Daddy managed to calm my sister (who in the middle of my birthday song burst out of the bedroom to knock herself with the office table... and then cried and cried until the song was over... Le Sigh).

Awww, we all make it look so easy! I just wish Mommy did't have to be out there taking the pictures... She should also be in this portrait!

Ok, so I guess that it is "taking turns" game time. Here is Mommy trying to keep my sister in place... She's just too much... In the end she had to let her go. I wonder what they feed this little Experiment 626...

The good part of it all, being just with Mommy. Nothing beats having all her attention!

And so, the last phase of my celebration begins... Mommy announces to me that it is time to open my gifts... And she dares to ask me if I wanted to do so... Sometimes I wonder...

To start things off, a gift from Godfather, a movie called "The Star Child". Old claymation film, Mommy says it is almost like the Little Prince movie...  I don't ditch old stuff, it all tends to be better than the new stuff.

My parental units apparently like cylinders... I got two. A short one... that featured foamies in aquatic shapes (which will come in handy for my projects)...

And a long one, which featured two plush dolls: Meeko and Mushu! I'm in love! Now, Kali tried to take them away from me, but my laser-beam sight ended that attempt... Hey, I share my stuff, but this is ridiculous! I just got them! Mine! Mine! Especially Meeko (Pocahontas pet racoon)!

Yes, that grey thing over me is Meeko, and the red thing is Mushu.... and they are staying there, ok? Got it? Let's move on... Crafty stuff from my parents... This one was a pirate thing... And so I rolled my eyes...

Now, this one is a mermaid... Now THAT is more like it. Loved it. A crafty stuff I can look forward to...

And a third one... A butterfly. Yup, I like this one too. So... I'll share the pirates with my sister, I am pretty sure she will love it.

Another gift from my Godfather... a DVD? Are my eyes deceiving me? Finally, someone did something about the titanic DVD woes that I've had! Yay! And it is purple! My favorite color! Looking forward to no more skipping movies!

Meeko is still in my lap... as well as Mushu. As I said, they are not going away anytime soon.
Moving on... Gotta say I love this bag... Purple! Someone is paying careful attention to what I like!

Nurse Migdalia got me some fancy hair decor! It has butterflies and ladybugs, and features many many colors! Love it!

And I see that Tink made it, too. This will definitively be very useful for my next trip... Yes, there is something in the horizon... Camp Pontiac. Stay tuned... Back to the sweater, I definitively love it. Tink is one of my favorites!

I was starting to feel sleepy, but Mushu bit me and I pushed on for a bt more... Godmother Maria sent me two gifts! The first one... Whoa! Is that a... shark? Mommy says I will be able to control the floating shark. Floating shark? I have to see it to believe it. Way cool! Looks just like Bruce!

My eyes were closing, but I did open them to catch a glimpse of the second present... A clown fish? Nemo? IS it Nemo? I just could not take it anymore. My eyes closed and I was out for quite a while!

Yes, I sleep with one eye a bit open... Well, I do have to keep an eye on Meeko, Experiment 624 is roaming the room... Gotta make her think that I am awake and vigilant!

Yup, I am very vigilant, as you can see...

Aha! I felt something! She pulled my feather!

But she got away, so I went back to... being vigilant. After half an hour I woke up, went to my bedroom, enjoyed my new movie on my new DVD while holding Meeko and Mushu, and then I went to sleep... Now THIS is what a call a good easy-breezy day!

So... This were my two birthday celebration days. I know there are still some surprises ahead, I keep hearing rumors... But I won't spoil the surprises. I'm more of a "share each day as you live it" kind of girl... And so far, I am beyond happy to share all that happens to me. I like sharing the good above the bad... I don't talk about the daily treatments because you already know all about my medical life if you really know me... It is there, at all times... But in the in-between there are many moments of life that makes it all worth it. I am happy to share the miracles and the special moments... even the daily nothings that are so important as well! I am very grateful to everyone who touches my life, in person or in spirit. And I am grateful to God for making this big journey possible! You live, you learn... and then you become very aware that every second you live is amazing, precious, and awesome... And I want more!

God: Thank you for a 5th year of being here on Earth. Thank you for my crazy loving family, for my friends, for bringing the right people into my life, for making my dreams "possible possibilities". You gave me a big responsibility: To show everyone that there are no boundaries when you have a strong will thanks to a strong faith and confidence in You. Make me an instrument of Your peace and of Your will. Thank you for carrying me in Your arms, for so many blessings, for being my Good Shepherd. I shall not want or fear, for You take care of me in light and in shadows. Amen.  

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