Family Pasta Night!

This weekend I went to the Family Pasta Night, a fundraiser from the Joseph Lillo SMA Foundation! It was at the Robbins Reef Yacht Club. And guess what? I was the guest of honor! I had no idea! Now that was a surprise. I had fun enjoying the view to the port. I also got the chance to meet many special people that made me feel welcome and at home. Ah, this is the way weekends should always be! Breezing, chilling, and with positive people around you.

The ride was fairly short. I was fussing a bit since I get so impatient whenever I get to my wheelchair and I have to wait until my sister decides to cooperate... But once we are actually on the road I just dig the ride.

The day started out very chilly, but it got more tolerable. My sister looked like a pink gnome... LOL But after a while of running free she got warmed up and ready to let go of the polkadots.

I got to the deck and stayed there for a while, enjoying the view. There where big ships on the other side... On our side, the yatch port looked quite inviting and peaceful.

While I enjoyed the silence, Kali took a break from her tantrums and had fun painting in her coloring book.

Aww, it almost makes you forget her screaming... I tell you, every time she has a meltdown I get so nervous! I feel bad I can do nothing to help her stay calm and happy... Yes, I love her very much.

This is a last shot before the night came in. Mommy and daddy took us into the gathering place and we stayed there for a while. Boy, was that a feast! Music, food, prizes, you name it! Everywhere I looked I saw people having fun, all in name of the cause! Sweet!

The night came in, and I took a last stroll to admire the port lights. Awesome! It looks so different!

I just love how the lights look as if it was a big fire on the other side... The sky was clear... It is sad that we cannot see stars from here... That would have been something... but at least I am happy with this. It was a nice, peaceful view.

Daddy picked up a big rope! He is so silly. That was quite short, what can you do with something like that?

We all got ready to go home. I posed with my sister and Daddy...

And then I posed with Mommy. Yup, she rarely appears in pictures, because she is usually who takes them.

And we made it home, safe and sound. I was quite tired, I just wanted to sleep!

By the way, take a look at my shoes... Are they divafying or what. This was a pair from a whole bunch that another SMA family sent me a few weeks ago. Thank you so much Princess Courtney! They are a perfect fit, and they rock!

So... This was my adventure for this weekend. These past days have been quite eventful and filled with appointments... and the next two weeks promise to be even more crowded! So, I'll take a break and rest for what is left of the weekend... I have such a hectic schedule it is just not funny! But... I'm loving it.

God: Thank you for all the blessings and the promise of a new day. Thank you for allowing me to meet more good people, and for allowing me to touch their hearts. I am happy to see that I matter, and that although I may not speak, people are hearing my voice. Keep making my will strong and my faith stronger. Carry me in Your arms, and help me be an instrument to fulfill Your big plan. Amen.

Deuteronomy 31:6 "Be strong and courageous. Do not fear or be in dread of them, for it is the LORD your God who goes with you. He will not leave you or forsake you.”

Bronx Zoo

 

This past weekend we went to the Bronx Zoo. It was a beautiful chilly sunny day. We could not have asked for a much better way to browse such a big place! It was all filled with slopes that reminded me of Busch Gardens... but Mommy did not give up and braved the ups and downs with a big smile.

I was ready for action: Cool sunglasses, my farm friends at my fingertips, and the breeze making my hair move as if it was a long whip!

This small waterfall greets the entrance of the zoo. The whole place seems surreal in the middle of the city... Beautiful trees surrounded us, and birds seem to chant a happy song... This really reminded me of my home back in Hormigueros...

We went into a place that was all about birds. We saw many dioramas with live birds, and then some walls with the stages of eggs and then fledglings. Cool stuff.

Here we observed some deer brazing by the river. All was so peaceful, and so nice!

At this moment my sister was a bit sleepy, and everyone was happy about it. We enjoyed the silence while it lasted...

I saw the big white polar bear. I think it needed more icy stuff, he looked a bit sad...

My sister decided to walk... and she walked and walked and walked. At least that seems to make her happy. She enjoys nau\ture as much as I do.

This was a lovely place. Some

The giraffes made my day. There were very still, but then started running around almost like dancing. Ostriches joined them with glee. It almost felt as if they put on a show for me.

We watched the Dora 4D feature, and then went into the Mouse House. Loved it! So many types of rodents! The giant one looked scary, but almost all the other types looked cute... Just that, would not like these in my home. No way!

Most dioramas are ready for Halloween. So we all took a moment to take the mandatory family picture. I liked better the house with the Boo... This little pumpkin guy would not scare a mouse.

We made it just in time into the Butterfly House. Only a few butterflies remained awake and flying around, most were already resting in the ceiling wired fence. All in all, just the trail and the flowers make this place seem very magical.

There is even a pond filled with giant koi! I definitively loved that!

The pond is to my left... Behind me is a beautiful trail with flowers and butterflies... I wish I could have stayed longer, but time was running out.

Here is a nice view of the koi pond. This is something I would love to have at home.

On our way out of the butterfly place there is this iron sculpture. The sun did not let Mommy take details... but the idea should do.

My sister went behind one of the butterfly-kid mock-ups... And here she is, a pretty Zebra Butterfly.

And as we were to leave, agents from Hera found out Mommy was around and so they started coming out to haunt her. What is it with peacocks and Mommy? They always appear to follow her whenever she goes to a zoo... Well, at least this was the last event of the day. Soon after, we were back home... getting ready for a new week.

GOD: Thank you for so many good memories. This year has been running like the wind! I can't believe all the things that I have been able to do, thanks to so many wonderful people! I hope I can keep showing the world that I can do anything through the strength that you give me and my will to keep working hard for my goals. Help me open the minds and hearts of so many that are yet to know me. Make me an instrument of Your peace, and help me accomplish the important tasks that You have set me to do. Take good care of my new friend Amina, who should be back home in Miami right now... Bless her as much as You have blessed me, fill her life with love, peace and happiness. Carry all of us in Your arms, now and forever. Amen. 

Camp Pontiac

This past weekend I went with my family to Copake, NY and participated on the Starlight Children's Foundation gathering at Camp Pontiac. I met new friends and had a blast. There is nothing like surrounding yourself with genuine positive people who also defy so many odds... while smiling. Here's a look at what went on. Enjoy!
 

We arrived on Friday afternoon. There was adventure and drama through the voyage as upon reaching Copake, NY the GPS would not show the location... After some phone calls we arrived safe and sound.

We were in a cabin of 2 rooms joined by a bathroom. I took one room and mommy, daddy and my sis took the other one. All my stuff took up my space very quickly. We all went to the Dining Hall and had a nice dinner. We met other families, and a camp fire was in schedule... but we had to go back to the cabin as I was falling asleep and my sister was also very tired and cranky. The night was chilly but manageable.

 I got up bright and early on Saturday. After my respiratory therapy everyone was ready to enjoy the day! We had a hearty breakfast and then went out and about.

We headed for the Arts & Crafts section and spend some time coloring and beading. My sister found joy in using markers for the first time. I painted some designs in a ball, and then started beading a necklace... but soon it was lunchtime and we had to get back to the Dining Hall.

The camp's layout is almost like a tiny town. I really liked the open space, the pure breeze, no sirens, everyone smiling! What a difference from urban life!
 

Someone offered to take a picture, so here we are! Usually mommy seems missing in action, but it is because she is snapping the pics. It is nice to see all of us together at least once in a while!

After lunch I was quite curious about the zip line and the lake. We all headed that way. Mommy took me "cross-country" through the grass. So much green! Green everywhere! Just like my hometown, San Germán...

We arrived at the "Outdoor Adventure" station... where people fly and do crazy stuff. My sister kept saying all the letters on all signs... Cute, but after a while I wished she would stop. I don't get why she just did not read the whole word...

Kali had her first swing experience. I wished I could do so... I know someday soon I will swing too.
 

I kept rolling across the field, following my sister and the ball that she captured. That was fun. I love feeling the wind as speed increases... Mommy got quite a workout pushing my wheelchair! Yup, her root canal did not stop her!

And while we were having fun around the field and bordering the lake, Daddy decided he would try the zip line... And so he got up there... to fly!

 That flying thing is not for me. I was glad to see he landed well... Me, I rather be well grounded. Mommy also agrees on that.

Here's the video of the flight, proof of Daddy's courage...


After the flying Daddy event, it was time to go have some food. We met other families and kids... Now, that was quite en experience.

It was almost 7pm, and I was getting ready for bed. So we all headed to the cabin for my respiratory session... It all takes two hours. I wish I could have gone to see the movie with all other kids, but I was beat. I really needed the rest...

My sister waited contently while playing in the VReader. Gotta love Elmo.
 

Here's a peak at my nightly treatment... Daddy is coughing me.

And here he is using the ambu. As usual.

 Mommy took my sister for a walk while I slept. I heard that they went to a dark area were they could actually see the stars! Oh, another thing that I missed... At least I remember the stars from my hometown... but still... (Sigh) I also hope I can see the stars soon. You just can't do so in Newark, it is so polluted... That's why I love the Planetarium. After that there was also ice-cream (my parents are crazy, eating ice-cream with the chilly weather!), and then everyone went to join me in my slumber.

Sunday morning came really fast, and we all gathered at the Dining Hall. Here's some pictures of the ceiling... They are paintings from the camp Summer groups. Apparently they divide in team White and Team red... These are just way cool!

Here I am, taking a last glimpse at everything. Saying goodbye to such a peaceful place was hard... My family does not belong in the city... I know I don't. I am so happy we made this trip! It is good to be reminded of all the awesome things that God created... and that so many take for granted...

I will miss the people I met here... Mommy could not snap many pictures because my sister was too rambunctious at all times and kept distracting her... but I won't forget their faces. I will see you all again, and then we will make up for what I could not do.

As we got in the van, Kali was asleep. I was happy for that, for that would mean a peaceful journey back to the so-called "civilization"...

This is usually the way I see things... through the rear view window. I looked away, saying silent goodbyes and feeling so grateful and at peace! I know that somehow I felt renewed.

And hopefully this farewell will be just for now... I know I gotta come back. I gotta see the campfire, and I gotta see the stars! That is my next quest. Until then... more adventures around my river bend!

GOD: Thank you for showing me a piece of You in so many families that I met. Thank you for allowing me to be healthy and endure the weather, and for surrounding me with the right people to lift my spirit! Thank you for all blessings, big and small... for my family, and for everyone who touches my life. Amen.