FRIDAY 27: THE FINAL
FRONTIER
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.
SATURDAY 28: BUSH GARDENS
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!
SUNDAY 29: BEACH FAIL
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.
MONDAY 30: THE VOYAGE HOME
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.
TUESDAY 31: BACK TO NORMAL
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.
GOD
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.
