Tuesday, July 31, 2012

The Virginia Beach Adventure

Friday finally arrived! After three days of intense planning and preparation, everything was placed in our van and we were all ready to go. I was quite excited as I heard this was going to be a long trip, and the only long trip I've had was my long trip from Puerto Rico to Newark... and that was four years ago and not a pleasure endeavor! So, I was quite excited for this... My teacher and my therapists have talked so much about the beach, and I have watched so many You Tube videos so I would be completely ready and set for action! We left our home at 11:00am. I was quite confident that things would go well... after all I was feeling awesome. 

My sister screamed as usual until she got enthralled by her Bugs & Buttons game. We stopped various times to get potty breaks, and so Daddy could stretch his legs. I was very interested at the changes of scenery, from busy city to industrial atlas to country chic to coastal paradise. It took 9 hours and a half... and was much worth it!

Our trip took us from Newark to Delaware and then Maryland. I have to say that the Pocomoke area is gorgeous, luscious green all around! We went through the Charles Lankford Memorial Highway (13) for a long while, it runs through part of Maryland and Virginia... We got into the Lucius Kellam Jr Bridge-Tunnel also known as the Chesapeake Bay Bridge Tunnel. This bridge is pretty... long... and it features the ocean on one side, and then more ocean on the other side... The bridge goes underwater at two points, so we went through two underwater tunnels. Fun, fun, fun! Oh, Mommy loved that, especially with a storm that was going on, some rain, and lightning falling in the horizon... Daddy had a blast at Mommy's expense. We all could only hear many “Oh my God!” exclamations over and over and over again as the lightning filled the cloudy and rainy sky.

A small drop of knowledge: The Chesapeake Bay Bridge-Tunnel is a 23-mile (37km) long fixed link crossing the mouth of the Chesapeake Bay and connecting the Delmarva Peninsula's Eastern Shore of Virginia with Virginia Beach and the metropolitan area of Hampton Roads, Virginia. The bridge-tunnel originally combined 12 miles (19km) of trestle, two 1-mile (1.6km) long tunnels, four artificial islands, two high-level bridges, approximately 2 miles (3.2km) of causeway, and 5.5 miles (8.9km) of approach roads—crossing the Chesapeake Bay and preserving traffic on the Thimble Shoals and Chesapeake shipping channels. The system remains one of only eight bridge-tunnel systems in the world, three of which are located in Hampton Roads, Virginia.

Back to the trip... We finally made it to land after almost 30 minutes of never-ending bridge drama. From there to Virginia Beach was a breeze. We all instantly loved the area. Houses featured colonial styles that looked very much like what we are used to in our homeland. The chore was alive even through the stormy night. 

We arrived at our destination, and we felt as if we had been transported to Isla Verde's beach zone. The hotel parking was filled, but there was just the spot for us. Our room was in the first floor, and it pleasantly featured a living room with a wall to wall view of the beach and boardwalk. I stayed staring at the waves that were crashing into the sand while Mommy and Daddy unpacked. My little sister ran around from the bedroom to where I was and then back, much happy to finally leave the van. I can imagine in her head she was saying “Freedom” at the top of her lungs... I know I would have screamed that if I could.

Daddy prepared a bed for me, with all the stuff needed for my night respiratory therapy. My sister ended up using the pink cot that was bought mainly for me... She took over it anyway, and I didn't complain as I loved the comfy bed and the safe haven that it offered (high enough to keep my sis away from my face, thus away from my mask! I definitively fell asleep feeling quite tired, contempt and beat. Did I mentioned that I did not fall asleep on the way from Newark to here? Did I mentioned I woke up at 6:00 am to get ready for the trip, you know... respiratory mambo-jumbo and stuff... Did I mentioned we arrived almost after 9:00pm? I was too excited to sleep on the way. I loved watching so many houses and trees and the landscapes and the different sounds and scents... I did not want to miss a thing. So, yes, after Daddy did my respiratory therapy I fell asleep quite fast and quite deeply. Day one of my getaway adventure came to an end.

We were all quite beat from the travel, but somehow we managed to wake up by 9:00am. Daddy did my mandatory morning respiratory therapy, Mommy prepared everything for the day... My sister Kali was in one of her special moods... 

I took a moment to glance at the beautiful day that God created just for me. The sun was high, the storm was nowhere to be seen even if based on the news it was supposed to be over us... The sea was clear blue and the waves calm and inviting. People filled the chose and they also cycled in funny carts... families cycling in carts... People were quite silly!

We finally got out of the hotel at 1:00pm. Mommy mentioned we were to go to Busch Gardens, and Daddy pushed some buttons in the GPS. Off we went... but what was supposed to be a 45 minute trip turned into a long almost two hour trip thanks to an accident that caused a big, big bulk of traffic! Daddy had to look for an alternate way, and we made it thanks to that. 

We arrived at Bush Gardens after 3pm. The day was quite hot, so I was glad we had not arrived earlier... The streets and decorations were all quite European! The lands depicted here were Ireland, Scotland, England, Italy, France and Oktoberfest. Cool stuff!

As we went in we got greeted by a guy named Tom. He said we were in Scotland. And he said there was a show that would start soon in the Celtic theater... So off we went for a break from the heat and for some entertainment... Ok, so I basically decided that it was the perfect spot to take a nap but it was not my fault... so much heat makes me so tired and drained! 

I heard Kali screaming and throwing tantrums... I heard people singing and tap dancing... I heard merry stuff and claps. But I didn't wake up for all of that... I woke up when it was silent and I realized something went on... The show was over and Mommy was taking me outside. At that same time Kali was giving Daddy a hard time, and basically was not letting any of us go on with our day.

We all sit down in a shaded area to try to figure out what was wrong with my sister... I had my food, and Mommy and Daddy finally gave up on Kali. We went on rolling up and down the slopes trying to see if she would calm down. I guess she did that out of frustration... She really wanted her juice and nothing would make her stop... nothing. She was driving all of us nuts!

We stopped to admire birds in the aviary and she started her crazy screams again. Frustrating! Don't get me wrong, I love my sister, but sometimes she is just too much! We walked through the wilderness and enjoyed crossing a bridge... I decided to look at the map and look for a nice haven... I just wanted a place with A/C... 

Mommy decided the best thing was to get to the Sesame Street area, so we took the train... and went out into the wrong spot... We had to walk through Italy into England and then to Sesame Street... All the while Kali screaming and fussing... But then a ray of hope! 

We gathered in front of the amazing water sprinklers area, and Mommy just commanded Daddy to go and dive into it with Kali. I've never seen Daddy do something (that Mommy ask him to do) so fast! I kept rolling my eyes at it all... Kids... Kids everywhere. Mommy sat down and just watched as Daddy and Kali got soaking wet. She turned to me and asked me if I wanted to go in. I rolled my eyes... Me? I am too old for those kiddie games. But then after a while I started to regret I said no... It was just too hot, and they really looked like they were having fun... So when Mommy asked a third time I said “Yes! Yes, please!”. 

Mommy shook her head but then started taking things off my wheelchair, then covered my vent up so it would not get wet. As Daddy passed by she told him to roll me in. He hesitated at first, but she insisted... So off I went into sprinklers and water pails! Now THAT WAS FUN!!!! I had such a BLAST! I hope that Mommy and Daddy read that in my eyes, because that was the highlight of the day: I was finally doing the same as any other kid around me. And guess what, it felt so good!!!

So, the water sprinklers experience definitively is something that I will never forget. I just wished Mommy could have join us... but through this all she was a very bad cold. I am amazed at how she pulled through the whole weekend, as she was really bad at nights with fever and chills and even a toothache! But I know that Mommy has quite a strong will for whatever she puts her mind into. I know she would make things happen, period. I know she wanted to have fun with us, but she did good... Skipping a hospital or a doctor's visit is always a good thing. I had fun with Daddy and Kali for a long while. Mommy called us out around 7:30pm... 

Just as we started drying off and moving on, my power went off and so the vent started beeping. My other battery was in the car, but the whole process of getting to the car was long and very tiresome. Kali's crying because we got off the sprinklers area did not make things better. Mommy wanted to see the fireworks show, but at the time we got to the car she just had no more energy to go back. I think none of us did. While waiting to get in the van I fell asleep, as well as Kali. We were all done. 

Daddy picked up some food and we headed back to the hotel. This time it was a 40 minutes smooth drive. We arrived, bathed, and after my night respiratory therapy session we all went to sleep. What a long tiresome fun day!

Mommy woke us all up around 900am. Daddy complained but finally complied... Originally the plan was to go to the Aquarium and then try the boardwalk... Since the day seemed so amazing we all decided to leave the Aquarium for later and just go seek the accessible park JT’s Grommett Island Beach Park and Playground, near Rudee Inlet at the Virginia Beach oceanfront. 

Well... It was a good idea, but ended up being a disappointing experience. I thought I would be near the sea water, or that I would be able to be in the sand... The place is nicely shaded, and has many activities. It is a nice playground... if you can at least move your arms. It is easy to access as it has nice ramps all around, but the actual activities that can be performed are just that... playground activities for kids with some disabilities, not really activities that I could actually perform or enjoy. 

Mommy tried to check the beach wheelchairs to see if she could get me to the shore, but they are normal wheelchairs... I need to be slightly bent or to lay mostly flat, so a normal wheelchair would be a big hazard for me. There were no other options for going into the sand. My wheelchair would just sink on it. And to reach the sea is a walk that Daddy could not do carrying me safely (I am a tall girl). So... I was not able to reach the water or play in the sand...

Mommy was quite crossed by this. She tried to see if we could just go through the boardwalk then, but the heat was just too much. Just 15 minutes and I was already melting! I had put on sun protection of SPF 110, and I was already getting reddish... So, the beach afternoon attempt was a total fail. 

We all headed to the hotel, thinking that we should just go to the pool that is in the 8th floor... Up we went, and upon arrival we saw that there was just too much people for me to get in... So... It was obvious that something or someone did not want me in the ocean or in a pool, and Mommy took me down to the room. 

All this time my sister had been crying and screaming and throwing tantrums, and it all had become too much... so much that the Aquarium part was completely forgotten. Mommy just asked Daddy to take my sister to the pool, so they both would cool off... That was the best idea. I know that my sis had a blast playing in the pool... And I had quiet me time with Mommy. We watched the gorgeous seascape. Mommy opened the clear door a bit so we could smell the salty air, but also keeping the heat outside. We did our nails, watched the people and their silliness, watched the seagulls... Mulan started on TV and it was all just simple perfect serenity. I always enjoy being just with Mommy... no one else understands me so well.

Daddy arrived with my sister, and then went out to get some food and ice cream. As he came back, Aladdin was playing, so he did the respiratory session while we all watched the movie. Kali kept blowing bubbles (actually more like swallowing them...) and demanding attention, but at least she was not frustrated anymore as she spent so much energy swimming and being herself. She ate and then she fell asleep quite fast. I followed her lead. Mommy and Daddy stayed a bit late putting together everything as it was the last night and we had made quite a mess... well... mostly Kali, but hey... I have lots of stuff that can be messy on their own. Our third day went away quite fast.

And so... the last day at Virginia Beach came to vanish us from perfect salty air... Daddy got up early to make sure I had my therapy and I was ready. Mommy gathered the small things that were overlooked, and by 11:00am we were ready to begin our journey home. 

This time the journey took almost 10 hours. We were all quite tired, and my sis was quite impossible. Nothing would please her, and in the end she ended throwing up and being moody. She seemed to be feeling bad. Strange, because in the morning she was quite happy and energetic... Maybe she was upset because she was leaving such a fun and happy place...

I know I was a bit sad too... I loved that salty smell and spending so much time with Mommy and Daddy. They always make me feel special, and being far from so much daily stress was the cherry on top of the Cherry Chiller (yup, that's Mommy's favorite beverage for this Summer).

This time we made around 7 stops on the way, Daddy was quite beat from the long drive. Going over the bridge was an adventure in itself as Mommy is very psyched-out about bridges and tunnels, and this time she recorded the 23 minutes of it just for our vault of memories. 

We had a moment in which we thought we lost the way, but it all ended up in the same place (we just took a parallel route). The change from beach to country to industrial to downtown is something in itself. I had absolutely no problems while in Virginia, keeping my sats high and no plugs whatsoever. 

Here in Newark the air is so, so polluted! I definitively felt the difference. Mommy tells me that in our homeland it feels like in the shore, the salty air that is so perfect for me! Oh, well... After much complaints, Kali finally ate something: Her first doughnut. 

I was relieved, believe it or not I get so worried when something seems wrong with her... Yes, I am the older sister, it is my duty to worry, ok? 

The long journey ended well. We reached our apartment and everything was where it should be. I went to sleep really fast, as well as Mommy and my sister. Daddy spent some time putting the basic stuff back where it belonged, but soon also went to sleep.

Today I woke up bright and early, at 6:00am. My teacher came in at 8:00am, and then my Occupational Therapist at 10:30 and my Physical Therapist at 11:15... Yup, it was a very busy morning. I also went to camp at 1:00pm... Mommy got some good news about a new Speech Therapist that would start today and that will come Mondays and Tuesdays, and an Assistive Technology Professional that will be coming on Wednesdays. When I arrived from camp, the Speech Therapist came in. I was finished with all this frazzle-dazzle of people at 5:00pm... Finally I was able to watch a movie! Geesh! Summer is just too busy... What are my parental units thinking?

So, this is the last day of July... My godfather turned a year older on the 25th, my birthday is around the corner (just three weeks away) and new adventures are in the horizon. Life is sweet! 

Thank you, Joseph Lillo SMA Foundation for Children for making this getaway experience come true. I know that doing anything is very hard for my family as they worry about me so much, and this experience was priceless. We learned many things, above all that nothing can stop us. Watching God's creations I see that each and every one of us has a huge purpose. It is frustrating that I want to do some things and I have to improvise to do something similar... but taking a close look at what I've got I see that it's all right. In just four years I have seen things that some people don't see in a lifetime... good things. Miracles. I am whole. There is hope. I am happy. Nothing else matters.

Thank you for keeping your eye on me all this time. Please help Mommy get well, so her brain is clear tomorrow morning... Help my sister so she learns to listen and obey more... Help Daddy so he keeps his good spirits... Help all my service people to be just like Mary Poppins (never crossed, cheery disposition, firm and kind)... And help so many families that needs hope as they are going through some very difficult times. Thank you God for allowing me to make this trip so I can see things differently. Thank you for helping us survive my sister... And for so many unforgettable memories. Thank you for starry nights, sunrises and sunsets. Most importantly, thank you for surrounding me with love. Amen. 

Tuesday, July 24, 2012

Friday, July 20, 2012

Camp Week 2: Celebrating the Person

This week went away in a blink! Between crafts and classes and running everywhere time was quite in a constraint... but all was fun! On Monday, Tuesday and Wednesday I had my classes during the morning, a hefty four hour marathon! And I loved it! For Thursday and Friday I woke up at the same time anyway so I would be able to complete my crafts for the camp (yup, camp gives me homework... everything they do during the mornings I complete at home... I truly earn my fun!).

On Wednesday I went to an appointment to meet some people who perform alternative therapies (hippotherapy and aquatic therapy among other therapies, cool stuff!). I amazed my parents as the PT that I met held me sitting up straight... and I mean completely straight, for more than 15 minutes. I was concerned at first, as Daddy is always the one who carries me and holds me like that... but the magic happened and I definitively trusted this lady. Although things were left for discussion, turns out I will return to this place to take on a new phase for my life: Setting me on physical motion! Details later on... Now, back to camp.

This is one of the walls for PERSON. By the way, can you find awesome me in that group of people on the wall? I know, the pigtails give me away. Those are all depictions of the other little persons that are in my group this year. Each one of us got a giant person and through the week we worked on it so we made sure to learn everything about our body parts and what makes each one of us special and unique. Me, I have my big bright eyes! And of course my normal accessories: pigtails and giant nose piercing (ok, I hope I didn't said that too loud because Mommy would get quite upset if she finds out the true story). And I am standing. Yes, I am standing. It is definitively the perfect depiction of me! This is how I see myself.

So, here is proof of the Return of the Diva to the stage! After a whole year, I am back to take part of this camp, especially to participate in my favorite activity! Who knows, I may have to balance animation and acting when I grow up. For now, baby steps. I am just warming up... Here, my class performed a Tribal Circle. I stayed at the center, taking on the mantle of the chief. Oh, I really hate that I left my headpiece at home... I just realized I could have worn last year's... Oh, well. The show must go on!

The kids and my teachers went round and round around me while the kids followed and also beat some small drums. I was just focusing on not holding my breath (in my case that could really be a bad thing). I looked at each one of them, and I was quite comforted by the fact that this simple thing makes me feel I really belong. The other kids look at me and are unafraid. It is funny how much adults twist things...

Here my peers are doing the ritualistic dance. Some are recovering from going round and round... I keep focus on not skipping a breath. This was my first performance of 2012, and I didn't intend to spoil it!

The last circle of drum beating and dance finally arrived. Exhaustion was evident, and it was time to close the act. The kids followed our teachers out of the stage, all satisfied with their performance and certain that a reward awaited on our classroom's hallway.

And of course, I followed. Mommy makes sure of that. Fast and furiously, I run away from the stage and get ready to enjoy the latest fruits of my labor. I reached Daddy, who recorded everything while Kali clapped and screamed... I wonder if she is my own personal groupie (maybe the kid has potential after all). Daddy was quite excited, and Mommy was quite happy too. All is well that ends well.

Here is a shot of the moment I am about to be placed on the stairs lift of the auditorium. Mommy has to straighten my wheelchair as up as I can tolerate so I fit well. I was so energized and happy about the play that I did not fuss about anything. After reaching the classroom I picked up my science project (sugar squares and shapes), my photo square (which I painted all by myself thank-you very much!), and my little person. Cookies, juice, and off to the street! The week is over, and I am going to get a well deserved nap! And tomorrow, to visit an old friend who never fails me...

Here's a video of my class's drum dance mayhem. Enjoy!

GOD: Thank you for allowing me to be fine and endure so much work! I am giving it all my 100%, I know that I can do anything because You give me strength. I always feel you around me and inside my heart. I have no fear, and I know there are many more miracles laying ahead of me. I trust You, and I am so happy to say that You are not only my savior, but also my best friend. Help and bless so many that need You, lift sadness from their hearts and place a mantle of serenity and peace over them, so they can endure and evolve... Thank you for Mommy and Daddy and Kali and friends, and for anyone who has touched my life. Thanks for watching my every breath... Amen!