Wednesday, August 22, 2012

Crayola Factory

Camp may be over, but the fun never stops! Therapists are coming in and out (finally!), and I am completing crafts and watching movies... Yesterday Mommy and Daddy had a special treat planned:  We went to the Crayola Factory! I learned all about how crayolas are made, from how they are done (basically oil and chalk) to how they are labeled and packaged. I even saw the world's biggest crayon! Really cools stuff!

The trip was not planned, but the day was sunny, not too hot, and Daddy was up to driving... This was not so far, just an hour away. There was no traffic, and it was a smooth ride... Just as I like it. After that trip in the beginning of the year where we had to wait 4 hours in the Holland Tunnel I definitively appreciate nice uncluttered roads!

As we arrived, a big red crayon with a friendly face greeted us.  So we had to take a moment for a family picture. Daddy held the crayon as if he were holding on to a spaceship. And oddly enough, my sister was calm and compliant... What a Kodak moment!

Mommy took me through the history walls... reading to me every little detail about when crayons were invented, when they started being boxed, and even name changes...

All I had to say is that it was soooo boring! I know Mommy gets a kick out of reading details and memorizing data, but come on! So many things to do and she kept fussing about walls. Ugh!

Finally, the ending. Ok. so it was interesting that some names were changed to promote globalization... and inter-racial tolerance (wow, crayons can have that much influence!) between kids of all races.

We moved on to enjoy the show about how crayons are made. I saw they have different stations. In one station they mix the ingredients, and drop the "syrup" in a tray that has holes and cylinders. Then that is cooled off, and the tray is emptied into an area of inspection

The crayons get inspected to make sure they are all in shape! Broken pieces are melted back into main syrup... Nothing goes to waste! Then the crayons get labeled, and then they get sorted by colors into different canisters, machines sort them so there is one color of each crayon inside boxes, and that's that. You can tell the whole process had me quite engaged!

My sister... not that much. She was engaged with her V-Reader. I won't complain... She i still too little to understand as I do. I guess it will be my duty to explain things later on...

I passed by the areas of funny mirrors and a seascape where you can write stuff in the wall... Then there was an area where you could make shapes in the wall with a glowing stick. I had trouble seeing the images, so I moved on.

I waited patiently as I saw my father having fun scouting for crayon bounty! There is this game... where you have to collect crayons that are in specific areas... You have to collect five special crayons. Daddy was having a blast finding them for me and my sister.

While I waited, Mommy helped me get into one of the special photo studio booths... I was happy to see that I was just the right height so the camera would catch me! Mommy helped me print out an image of Cinderella with me in front of the picture! Awesome!

We passed by the area of testing floor chalk... I would not touch the floor, but I definitively would pose with this cool mural as my background... My sister seemed to like that idea. Cheeese!!!

I enjoy my solo pictures much more... I know, I just love the individual attention. It also allows me to practice my thousand eye moves. Here is a smizing one...

We went up to the 3rd floor, and it had a wet attraction in which you have to make a ship float through many many obstacles. The main pilot of my ship was Nurse Migdalia... whom I caught enjoying pushing the ship through gates and rivers... maybe enjoying it too much...

We reached the coolest room ever! Here there are giant monsters, and their bellies are lighted screens. You use a neon marker to make shapes as you like. This looks like a chalkboard because Mommy used flash... but without it you get to enjoy the magic...

See what I mean? I love making neon shapes. I loved writing in the board, with Mommy's help. We made faces and hearts. We are both so talented!

And while I was having fun, my sister let go of her V-Reader to take my iPad... I lent it to her, but eyed Daddy with caution. I know Daddy wont let anything bad happen to my stuff... He better!

Finally, we reached the 4th floor. It was a gallery, and the most peaceful room in the whole building... Apparently people do not like to do art appreciation. Well, I do. I looked through everything, and was quite amazed at all the stuff kids my age have done! I was also quite exhausted... And by the end of the exhibits, I fall asleep.

Mommy took this picture from the 4th floor... Outside everything looked so beautiful! Green trees, blue sky, brick buildings... Lovely.

Since I was sleeping my parental units took a break to take an actual rare picture of themselves. We then went down to the first floor, visited the Crayola store to get the prized 5th crayon and a picture of the biggest crayon in the world, and get some artsy stuff. Wow! It actually took us 3 hours to tour the whole Crayola Factory... and that was without stopping to color our stuff. Mommy gathered the crafts so we would do them at home.

There is a pretty park right in front of the Crayola Factory. A big stone says it is in honor of firefighters... There was a small stand where a guy lends people books for reading while in the park. Kids where riding bikes... the water fountain looked very peaceful.

Mommy took a moment to capture the overall place (and its high middle firefighter obelisk) and me and my sister. Incredible, she didn't turn her face! Me, I was rocking my sunglasses. We got closer to the water fountain and enjoyed the breeze, the sunny day, and the good company.

I have to say I loved it all. This is exactly what I should be doing everyday... It is sad that there is no nearby place like this at home... and then, that sunny days are so scarce (yup, Winter is coming... and apparently my sister agrees).

 And a cameo appearance by our guest for the day... After this, we headed to our car and of we went back to New Jersey! And no screams in the background, as now we make sure to pack what my sis likes.

This week I've had an overload of therapists coming in and coinciding, actually a happy thing... It is almost as if I were throwing parties! I feel like a social butterfly! I am really enjoying my adapted dancing Mickey (a donation that my AT adapted, thank you Adam!!!), as well as I am enjoying doing so many crafts and so much attention. I am missing my teacher a lot, but I know it's just two more weeks until he's back...

Well, I really can't complain. This year I have done so many things I thought I would never get to do! I thought my life would be all about hospitals and four-walls at home... But no... God has helped me be healthy, and has allowed me to have a taste of life. It is almost like my family has been allowed to celebrate by birthday since May! I am so humbled, and so grateful...

My journey is about sacrifice, about endurance, about never giving up, about faith, and honor, and courage. I promise to keep living life to the fullest, embracing all that is important and invisible to the eye, and delighting myself in so many wonders that are waiting for me to discover them! Thank you, God, for allowing me to share so much with my family, for allowing me to get to know them all at times when they can be free to smile... Thank you for allowing us all to enjoy each other. Thank you for every precious second. Amen!

This has been an unforgettable Summer... My Summer.

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.