Make a Wish: My Wishing Trip

This week was another very exciting week. Seems that each day a big new surprise arrives! On Monday 16th I woke up to the awesome news that I would go to the Make a Wish headquarters in New Jersey, which is within a castle!  The morning seemed so long as my excitement built up! I took my class, my physical therapist arrived... and I was getting quite antsy about it all. I did not want to be late for my big appointment! 

Finally, off we went towards our newest adventure! It was a nice day, and the road was easy. It is almost as if everyone knew and simply plotted to make way for me. It is always nice to see green landscapes and flowers, a sight I often long for as there are no big green patches in Newark. It would be so nice to have a garden nearby... Anyway, we made it to the Monroe Township, and imagine how I felt when we arrived to an actual castle! I thought Mommy and Daddy had been on joking mode, but no... it was a castle... I started worrying about dragons being nearby...

As we went in we were greeted and made feel at home. I absolutely loved the stained glass art depicting a lovely princess (who has no hair as she is a cancer patient, and so represents all illnesses that affect kids on the outside), and a knight (who seems to be fine, representing all kids with illnesses that are invisible to the eyes). Inside, everything is well lit as there is a big sunroof that allows you to see the sky. I could see that there were big rainforest leaves creeping from the second floor... To one side there is a big wall filled with stars! Each star bears a name. The biggest stars represent the people that have made the biggest donations to the organization. I just think so many stars together look awesome! But then I am a big fan of the night sky... Mommy has told me many stories about the starry nights back home!

We went through the rainforest on the second floor, to a room made for inspiration. I felt so comfortable there that I took a 15 minutes power nap! My sister Kali spent much energy running around and making the seat/pillows roll. As I woke up, I was taken to the secret chamber called the Wishing Room. Now, I cannot tell you about what is in there as it is a secret room that only can be viewed by those who are to make a wish... the most important fondest wish on your heart! I went in... and took the magic home with me. I know everyone around me felt the magic. A few things have made me feel so special, and this definitively enters the list. I am so humbled that this has happened to me! 

After making my wish we went back downstairs and took some pictures as memento of my special day. I was told that now I have to wait patiently, and keep my wish within my heart, so it comes true. And so, I will. The journey back was filled with dreams dancing in my head, and the strong belief that there are so many wonderful things ahead of me... I cannot even begin to imagine it all. The good things always put the bad things behind, conquering them. I know that there is so much people working hard to make me happy, my life is filled with love without strings... Courage, faith, family and friends... Now THAT is how you live life to the fullest!

The rest of the week was quieter, although not uneventful. On Tuesday I got a demo for a new stander, the Bantam, and so far it is exactly what I need. I will get to keep it for two weeks. Hopefully insurance will approve it after that... and a new one should arrive maybe for my birthday (yes, I'm being extremely positive here but that's exactly how I feel right now). I also had a neurologist visit just to say hello and goodbye... gotta love my social life. Wednesday and Thursday I had some tummy trouble, but I was back on track by Friday. On Saturday the day went smoothly, watching movies in the living room while trying to avoid my sister (she kept pulling away my mask... I wonder if I should be concerned...). Exciting days, exciting life... That's my life. And I'm only getting started! Look out World!

GOD: Thank you for showing me just how special I am, thank you for bringing so much hope to my family and to my life... and for the constant love that is all around me. Keep on carrying me in your arms, blessing my life and the life of those around me. Amen.

Little Airplane

The Medina Family after the Amazing Potato Transformation!

Today one of my dreams came true: I visited the Little Airplane animation studios. Some of you may not know them, but it should suffice to say they are the people behind my favorite band of heroes: The Wonder Pets! I was so excited when Mommy told me that she had a big surprise for me! After watching some Small Potatoes videos she break the news that on Tuesday I was to go visit the people that makes the potatoes, my heroes, and so many other animations. I was too happy and just couldn't go to sleep right away. I didn't expect that Mommy would take my request so sewiously...

I guess that when I finally fall asleep my friends were singing in my dreams, as I woke up too happy and too eager to go with the day. Even my teacher and my therapist noticed I was giving the extra mile today... They were really surprised to know where I was heading in the afternoon. I don't usually get out from home on a weekday. All my outings are carefully planned... And they were excited for me, as they all know just how I feel about my dear animated friends!

We got in the car and the small big trip began. We all had no idea that Newark got so much traffic in the afternoon! Wow! I started to worry that we would not make it. I stared at Mommy, trying to see if she could read that fear in my eyes. I don't think she noticed much, as she was quite crossed especially when we had to go through the tunnel... I think Mommy does not like closed spaces. She was too happy when we finally got out.

After feeling like lab rats running through a maze we finally arrived at our destination! Alex, Air Traffic Controller at Little Airplane, came to meet us and to take us through the portal to land in the land where imagination rules. I paid close attention to everything that he explained. I met one of the artists, who explained to me how the episodes are made... Wow! So much work! Storyboards, proposals, individual attention to characters... Drawing here, cropping there... And so much work! Did I mention that it is all so amazing, and a product of so much work? But more than that, it is all a big product of genuine love for kids just like me! I had a blast, absorbing every detail of the presentation. I did not like it when Ming Ming turned green, she is a lovely shade of yellow thank-you-very-much. And I hope that someday when I grow up I can get to do something as amazing as all this. I keep looking at it all, and I just know that each episode that I watch is magic. These people are all magicians, and their spells are quite powerful and compelling! Ming Ming rules!

I was tired by the time it all ended. It is usually my nap time, but I forced myself to be awake. This is not something that happens everyday! So, when it all finished I went into a happy nap that was short but enough to power me up for the trip home. I woke up as we reached our car, and I said my farewells to Alex. The way home was longer than expected (3 hours), but it was filled with songs, creative thoughts, and much excitement and joy. If I could jump of joy I would have reached the stars! What a perfect day! How good it feels when something you didn't thought possible comes true!

Thank you, Little Airplane! Through the years you have filled my life with songs of joy, feelings, dreams and hope. Through your creations I have discovered much about the world, and about myself. And you have given me my best friends forever, a trio who stick with me through thick and thin: My animated heroes... my Wonder Pets! Until next time!

Happy Easter!

 

What a week! My tummy trouble was sewious! At least serious enough for Mommy to insist that I should be checked up at the hospital. Off I went, and just earned a very small stay to make sure my hydration became stable again. My high heart rate was due to colic that was coming and going... 24 hours later I was released... basically on Wednesday afternoon. I was happy to go home, I needed a nice bath and full pampering! They just don't keep my beauty ritual in the hospital, how rude!

I spent Wednesday and Thursday recovering and watching What's in the Bible. Since it was Holy Week I also immersed myself in a small project that had 3 phases: Building a donkey, then shaping leaves and finally doing a foamy diorama of when Jesus went into Jerusalem and people received him with palms. I was to do complete another project, a wreath for the Last Super, but the whole tunny trouble left me too tired. Basically those were "resting & recovering"days.

On Good Friday my OT came in early in the morning and we finished up my stained glass project. We also did a construction paper bunny, which I really enjoyed. On Saturday we completed the egg project, in which we dyed some eggs and decorated them. Way cool!

Easter Sunday was quite eventful. Not only does Jesus comes back to life and saves us all, but Mommy also was born ages ago! Daddy got a big special cake, decorated it with some marshmallow bunnies and chickens, and we all sang along the birthday theme while Mommy blew the candles and made a wish. What a great year! Even Mommy gets to make a wish!

We all had fun and watched happy videos and movies. The latest on the What's in the Bible series arrived, so we watched it all day long. The Easter Bunny left me a big bag with stuff. I got some Snow White and Belle Squinkies and a fairy tales book (courtesy of Pirate Godfather), candy, and a big plush froggy (courtesy of Pirate Medina). For a moment I thought maybe Christmas came early! My sister also got a bag of goodies and her own tent/tunnel... And we both got to share a special card and its big booty, courtesy of Pirate Santiago! We also got to share cake!!! Plenty of it! It was great to watch Mommy laughing out loud... It is something that happens only on lunar eclipses.

So... Easter was a blissful family extravaganza. Love keeps on being in the air, and even the shrieks of my little sister were not that annoying. I am crossing fingers so we can have more days like this... What a blast would life be if this were a daily business! Love it!

God: Thank you so much for my family. I am lucky that so many people care for me so much, and that I am always surrounded by true love and so many songs! Each person that comes into my life is a song. It may be short and sweet, it may be loud and long... but everyone has a special note that always touches me and lingers within my heart. Thank You, God, for your sacrifice, and for the miracles You always perform in my life. You make my every moment magical. You are the greatest song of all! Amen!

HAPPY EASTER TO ALL!

At ER

Bad tummy trouble. Have been restless for more than 24 hours... Mommy tried helping with Pedialyte, a heat pad, and ginger tea, but nothing... I keep getting distended after each feed, which is not normal in me! Mommy also noticed the ventilator doing 4 different sequences of changes at specific time intervals, so that needs a big checkup as well... The tummy trouble is winning, and it is just too much. My heart rate has been spiking during times due to pain that comes and goes. Mommy slept with me most of the night, and for a while that made me feel better (I think I really got some napping done by then). I spooked her with the weird hives that I get whenever I'm exposed to heat (I always have some kind of skin reaction whenever exposed to warmth... I am too special...), I guess that was a reaction to the heating pad. After that thing was off me, my perfectly rosy skin returned. Go figure... Daddy took me to ER in the morning, so now we are all waiting to get some results and answers. Hopefully it is nothing serious... The important thing is making sure I'm well hydrated and taking a closer look at my belly and g-tube. Oh, well... I'm crossing fingers so this is a fast visit and I'll be home in no time. In the meantime, hopefully I'll get to catch some Z's... UPDATE: Ok, so I'll have to stay for the standard 24 hours... With all the tummy trouble I did get a bit dehydrated and they want to make sure I am in good shape. They also want to monitor my high heart rate to see if it actually goes away...

Using my iPad2!

Using my iPad2 and my TobiiP10

On March 9th I won an iPad2 thanks to Project Mariposa from the Gwendolyn Strong Foundation. Just a week later it arrived by mail, on March 15th. It was so exciting to open up the package, and actually being able to touch it!

Saying Thank You, GSF!

Turning it on for the 1st time

Listening to how to use the iPad

Thanks to my friend Catalina I just got a mount for it this week! Now I can really use it! Today, Daddy attached the mount to my Tobii's pole so now I have my communication device and the iPad both accessible from bed and from my wheelchair. The mount is from Ram Mounts, and it rocks!

Hanging around

Mesmerized

Techno geek

Chillin' with VeggieTales

Here's the video of me opening my iPad when it arrived, and of today when I actually was able to use it. Patience paid off!



I am so excited at everything new that I will be able to learn now! Not only will this electronic tool help me for my occupational therapy goals, but it will allow me to do other stuff during my home instruction sessions. And now when I am out and about I will really have a way to communicate beyond just a blink or a frown. A simple thing can be life-changing. I am very grateful for this, and hope that all other SMA kids who still have no access to such technologies can win one soon! Thank you from the bottom of my heart, GSF!

Besides being happy for all the things that are going on in my life, I ask of all my friends and family to please send many prayers for my SMA friends Emily, Carter, Amanda, Addy and Grace who have been sick, in the hospital, or desating, and for baby Blake who gained his wings at just 4 weeks old. May God put His hand over all of them, heal the ones that are here on Earth, and hold tight the little angel that went to him today.

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For those of you who do not know:
The Gwendolyn Strong Foundation (GFS) is a nonprofit organization dedicated to increasing global awareness of Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children, accelerating research focused on ending this cruel disease, and supporting families impacted by SMA and other life-altering conditions. Project Mariposa is an initiative of the Gwendolyn Strong Foundation (theGSF) with a simple mission: to make the world more accessible to those with severe disabilities through targeted technology product grants. Mariposa is butterfly in Spanish -- theGSF's signature symbol -- and like a butterfly emerging from it's cocoon, Project Mariposa will help those with disabilities to spread their wings. Project Mariposa will initially focus on granting iPads to those impacted by Spinal Muscular Atrophy (SMA) -- 50 iPads in 50 weeks. These incredible devices, coupled with the growing application library that accompanies them, are literally life-changing in assisting with communication, education, and independence.
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MaW First Visit!

MaW First Visit!

What I thought was a prank from Mommy and Daddy became something very real! Thursday and Friday they kept on explaining something about wishes, asking me the 4 basic questions: Do you want to be someone? Do you want to meet someone? Do you want to go somewhere? Do you want a specific thing? They kept telling me to think big, even if silly. I just thought they were just asking for the sake of asking... I played along, answering some of the questions, rolling my eyes whenever something seemed silly... Now, imagine my surprise when two young ladies came to visit me on Saturday to ask me about what I wanted to wish for! I froze... So... it was not a big joke? It was not my parents being silly? It was not a game? Wow, this is a real thing! I became so nervous! I even told mommy that I was scared! All I could think was "Wow! With great power comes great responsibility!". I gazed upon my minions as they exchanged words about what I said I liked and not... This comes as a big surprise! What a big day! And the possibilities that I heard really really floored me!

In the core I can be such a girly girl, even if I try to play things tough. I still love Wonder Pets, I don't think that love for my BFFs will ever die. I told mommy and daddy I would like to visit an animation studio. I like Kai-Lan, tolerate Dora... I can even show some kind of affection for the Gabba crew and Blue. But I definitively insisted on two things that would be out of this world: Meeting Pocahontas, and meeting Mulan. These two gals inspire my life with their courage, strength, and their wisdom and love. Of course I wish to go where they are... And meeting all the other characters I love would be a plus. I don't grow tired of Nemo and Simba. I enjoy so many things that fall under the category of all things Disney. Ariel was once right there just with my BFFs... but I no longer want to be "part of the world above"... I know I already am. And I now I can make change happen. And that is just what Mulan and Pocahontas did around them... they changed everything. I can change everything. I am just getting started!

I  enjoy nature and animals so much, and I got the idea that perhaps I could even swim with dolphins (hey, they told me to wish big). That would be an out of this world thing that I would never forget! I even thought of wishing being in a zero gravity room, just like the astronauts... so I can move. I guess that is the core biggest dream of all kids that cannot move on their own... Being in the water with dolphins helping out, or floating as if in space can make that happen... Still, having Mulan and Pocahontas hug me can be quite priceless in itself! Choices, choices!

I still have time to think things through... I will make my big wish after I visit the Wishing Castle. I've heard amazing things about it, and it should help me get a sound idea of what I want... the biggest thing I want! I should make that big choice/decision in April. Right now... my head is just spinning with ideas, as it all really took me by surprise! It was not a joke! I was granted a big wish! And I have the certificate to prove it! How cool is that!

Watching movie, using Tobii, holding Pocahontas

This was the biggest top of the world event this week. While the wish was cooking, Mommy also worked on getting some paperwork for hippotherapy and aquatic therapy. Soon we will all know if the efforts really work. These two therapies would definitively enhance my progress in school matters, along with many other benefits. I don't understand all the details, but Mommy and Daddy do... so I trust them.

The next few weeks should be eventful as well: IEP reunion, Holy Week, visiting the castle, Mommy's birthday, doctors appointments... And I hear things that are brewing but I am not to know yet. The mystery! Oh, I really dislike not knowing everything that is going on! But I really like knowing that so many cool things are happening as I speak, and that I have many things to look forward to... So many people are working to make sure I get all I need, and to make sure that I feel their love as well! I keep on being humbled almost everyday with so much kindness. I promise to work hard, and to do things that inspire others. It is the least I can do.

Me and my sister Kalisto

God: Thank you for all the things that have taken place the last couple of weeks... You had all these surprises planned just for me! You don't cease to show me just how much life is worth living, and just how much You expect of me! Help me keep on with courage, so I keep going through thick and thin. Make me an instrument of You. Help me understand Your will. Help me understand Your sacrifice through Lent, and the gifts You grant us all through Jesus. Please keep the Sniezek family in Your arms, granting them the serenity they need through the hard times they faced. Keep all of us in Your arms, fill all of us with Your love. Amen.

Positive Possibilities

This year had a rough start, but it seems that now things are making up for it all! March came in with a bang!  What am I talking about? Keywords: Make-a-Wish, iPad, power wheelchair, and meeting a very special friend. Here we go!

MAKE A WISH
Some days ago I got a notice from Make a Wish that I was granted the right for a big wish! Imagine that! Now I have to think what do I really want... Big wish! Big idea! Gotta ask Pinky-dinky-do for help on that one! Of course I do have some good candidates to make my dreams come true... I love Pocahontas and Mulan, I love Kai-lan, I love sea creatures, I love space... I love princesses, I love Wonder Pets... What to wish for... Mommy and Daddy showed me a coloring book with some wish ideas, and I know something amazing will pop in my brain. I am just puzzled, no one has ever asked me about making a big wish... I just make my normal birthday wishes, and I pray hard to God for so many wishes to come true... One big wish... That is my next task for the rest of the month.

With this wish granting thing also came a big invitation to visit the Samuel & Josephine Plumeri Wishing Place, the Make a Wish castle (headquarter of MaW in NJ). The act of wishing should be a uniquely magical moment, an event that is somehow out of the ordinary, taking place in an environment free of limitations, confinement, or stress. This is such a place, and it is simply AMAZING that me and my family will get the opportunity to go there... I just KNOW that my BIG IDEA and BIG WISH will come forth there! I just know it! And I'm so happy! Good news, at last!

THANK YOU GWENDELYN STRONG FOUNDATION!
Following the happy frenzy of knowing that I have a big wish to wish for... I also got a notice two days ago that I won an iPad 2! Imagine that! I've been dreaming of having an iPad to meet so many occupational therapy goals, as well as to be able to communicate while on the go... I thought I would never get to have one. And then, on Sunday, I got this message in my email: "Congratulations! The Gwendolyn Strong Foundation (theGSF) has selected Deirdre as a recipient of our "Project Mariposa" technology grant program. As a grantee Deirdre will receive an iPad 2 and a $50 App Store gift card. We were incredibly moved by your application and we hope that this grant opens the world for Deirdre for years to come". Imagine my surprise! And imagine my happiness!!! I will finally be able to actually use one! I will finally be able to show just how mighty my fingertips are! I can't wait for it to arrive! I am so happy and so grateful! I just know this little thing is a big step towards more independence. Look out, World!

MEETING MARY!

Today I had an appointment with the pulmonologist, and imagine my surprise when I spotted someone I see all the time in my computer! My online friend Mary was also there for a checkup! Getting to meet her was so cool!

POWER WHEELCHAIR: MISSION STARTED
I also had the Permobile guy and the ATP visit me today. Measurements were taken, and hopefully soon I will get to have a test drive... I'll think by my next birthday, if I get lucky (fingers crossed).

MORE THERAPIES ON THE HORIZON!
Mommy is working on getting some aquatic therapy and hippotherapy for me. It has worked well for other SMA kids, and we hope it all works well for me too. But first she needs to get the services in place... She is trying to settle things up with the school people, but they are failing big time in terms of my regular services... I don't know if they will actually be able to do anything else... PT and OT are ok, but I have not had my SLP for four weeks now, and there has been no AT assessment since classes began. The video-conferencing saga keeps going... It's all very dissapointing... Mommy is trying to make things happen... I hope things get back on track soon. I hope everyone sees that it is not just that I want these services... I actually need them. I also hope that somehow I can get to the camp at the Museum in Summer. It is one of those little things that made a big difference in my life, and I would definitively love to go back... I'm praying that the Department of Education sees the light and get to agree on things. I just want to move forward... I am tired of moving backwards or not moving at all!

IN CONCLUSION

As you can see, there is not a dull moment in my life. I'm using my ActiveCycle, I'm enjoying many St.Patric's related themes, I've been brainwashed by educational videos, I am loving my figit friend, and my new books rock (Mommy got me a bunch of books to revamp my library)! I hope that Springtime doesn't make things difficult (a bad allergy season is ahead) and that even more positive things are soon to come true!

GOD
Thank You for so many blessings! Each day You make certain to take care of me and my people... I am humbled by all the things You do for me. Thank You for carrying me in Your hands at all times, for protecting me and loving me so! May everyone who needs You feel You as strongly and real as I do! Amen.