Viewings in NJ and PR

FOR OUR FRIENDS in NJ/NY: 

There will be a viewing for our beloved daughter Deirdre Medina on Thursday, October 25th at 5PM-8PM

on Sweeney's Funeral Home, 857 Kennedy Blvd, Bayonne, NJ. 

Her obituary is not up yet, but it will be soon. You can leave messages in the page after Deedee's obituary shows up. :)

FOR OUR FRIENDS in PUERTO RICO:
Viewing for Deedee will be Saturday at Mayaguez Memorial, Mayaguez, PR.
She will be buried on Sunday in our family pantheon at Cementerio Privado "Antiguo Vivaldi". 
Farewell ceremony at 1:00pm, burial at 2:00pm. 

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Thank you all so much for your words and support during this beyond difficult time. Our family is very grateful and very humbled by all the love poured over Deedee's memory. We had no idea of how many lives she had touched, and how many people cared so much for her. We know she must be smiling from ear to ear, jumping up and down, doing flying cartwheels, and screaming "Awesome!". And we know that beyond the love here on Earth, she must be having a blast meeting and playing with all the other SMA angels up there who must have plenty of sparkles on themselves (courtesy of our diva).

Vivian & Mark

My Last Weekend at Home

This weekend was very special. This was the last weekend I spent at home. How can that be? Well, something really big came up and I just could not miss it. But I will talk about it after telling you about my weekend of almost adventures and haunts.

Mommy and Daddy gathered some Halloween movies for me, so on Friday night the countdown for my fun filled Halloween began. I watched Casper, Haunted Mansion and Mickey's House of Villains. I was not too crazy about them, but did not complain much. I guess I just felt like “going with the flow”, after all my parental units did spent some time trying to give me something different... I am not a brat, so I payed attention and had fun.

On Saturday I woke up early to get my weekend occupational therapy in the morning. Roze was quite chatty (she always is), and then Daddy finished my respiratory therapy, bathed me and got me ready to get out. He dressed me up with my old Alice costume, which I rock real good. I heard the screams outside, so I knew my sister was also getting up and ready to go. After a while we were all in the van and off we went... to get burritos? Ok, someone please give me a map! I thought we were going somewhere more... entertaining... Turns out that thanks to some construction there were some detours and we got a bit lost... Well, lost enough to be really late for a long trip, so Daddy decided to just go get food and drive around. I was not happy about it. I may not be crazy about Elmo, but I dig the Count... My sister was really upset at being in the car seat, and then I was upset we were not going to Sesame Place. Mommy reassured me we would go on Sunday, or next weekend.

So... We came back home... I met a neighbor and her twin kids. The whole trip to the border thing made me a bit tired and I took a power nap. Afterwards, Daddy woke me up for my night respiratory session and a movie... this time Nightmare Before Christmas. Hmm... I'm on the fence about this one, I like the songs (very catchy) but I find the whole thing very creepy. No one can take the place of Santa!

On Sunday we all slept late. That gave me the queue that we were not going out... I heard Daddy was not feeling too good so he slept for the whole afternoon. Mommy took the chance to get in my room, put more movies, and start changing things around like she always does. She put all my schoolwork in a wall (and yes I was fighting about that... Don't mess with where Mr. Farina places my stuff, thank you very much!). She made up excuses and off she went to put it all in one wall... Le sigh... I rolled my eyes and kept watching the movie marathon. The Black Cauldron... Gosh, all this oldies! Some are goodies, but come on...

I heard Daddy went out to get some groceries, and Mommy stayed hovering around me changing my princesses poster for the Wonder Pets trio. Awesome! My heroes were back were they belong, in my wall. That made me content. She browsed some books, made comments about the movies (which I tolerate when they are not that continuous...). Daddy came back, and got me ready for my night respiratory therapy. I know... I have to go to sleep early because I have classes on Monday... So, I set to watch a last movie and then therapy and sleep... After my mandatory vibrating hour, Daddy warned me about his “starting” the therapy, but he had to go to the bathroom. I sighted again... But then...

Something happened. Something different. I felt such a sudden weakness, and it really scared me... but then I felt something, someone, holding me so tight that I was no longer scared... I was in awe. I heard a voice in my mind, calling my name... a sweet voice... sweet but stern. I wondered who was it. I turned to see... and I got the biggest surprise of my life! Did you read well? I turned to see! I turned! And as I did so, I felt the urge to get up and stand... And I did!!! Was I dreaming? Was it real? I was still in my room, and I turned to see that although things looked blurry there was Daddy and Mommy fussing over me... Then there was people fussing over me... I got so sad... They all looked so desperate! I tried telling them that I was fine, that I could stand... Then I wondered how I could stand there when I was looking at myself on the bed... I heard the voice again, calling me. And all I could say or think was “But Mommy... and Daddy...”. As the voice answered so very sweetly “It is time”, I felt some tingling on my back... and I was stunned to see how a pair of pure white wings sprouted from my shoulders! “I need you”.

I saw that my room was empty. I was not in that bed... And there was no one there, all had gone. I saw a light over my bed, going through the ceiling... and clouds, and a rainbow... and more clouds... and the silhouette of other kids that were flying around... playing... giggling... enjoying being free. I really, really wanted to join them! I had never felt this light before... I had never been in flight before... I had never moved on my own. I opened my mouth and I heard myself saying “Wait... wait for me!”... And I suddenly realized that they halted in their flight and... they heard me! They heard my voice! Now, this all MUST be a dream... Standing, walking, flying, talking... I can't really do those things... Or I couldn't, not in my... old body...

Thinking about my old body made me feel a sting of pain and sadness in my heart. I looked back, and through the clouds I saw Mommy, holding my hand... crying... I wondered why she cried. I was fine. Then I looked into her eyes, and moved my little fingers. She smiled. I heard her telling me “You looked at me! You moved! You are going to be all better”. I answered to her... but she could not hear me anymore. The clouds shrouded everything around us.. I could still feel her warm wands caressing mine... I heard her singing to me, that same song she always sung to me since I was born... And then I could not hear her singing anymore. I heard machines beeping... I felt people rushing... And I finally heard her saying “Stop. Stop it all. Let her be free.”

All was silent. I felt at peace. Through the clouds I found Mommy and hugged her... Daddy arrived, and I hugged him too. I kissed my beloved sister in her forehead... I smiled my biggest smile, although I was not sure that they could see me. I opened my wings so they could see and behold their beauty... I still was not sure that they could see me. But... I did see everything afterwards... I saw how they cared for my old body. I saw a priest coming in to make me a soldier of God... which I already am. I saw Mommy and Daddy and Kali holding each other very tight... I felt the warmth. I felt their strong love. I felt everything.

I am free now... A winged soldier of God that vowed to watch over my family to make sure they are alright. I had mentioned earlier that this was the last weekend I spent at home... Well, in a way, and that depends how you see it... I will rephrase that. This was the last weekend that I physically spent at home. I know that wherever my family is, I will be there. And something big did came up, now I am their guardian angel after all! I am free... to be wherever I wish, I can stand, I can move, I can talk... My wish is to be with them, forever.

So here I am... inspiring Mommy to write my last post, so you all can hear my voice and know that I am fine.

I no longer have SMA. I can do anything now, and have no pain or anger or fear. I don't depend on machines to breathe. I don't need a stander or a power wheelchair. I no longer have to ask anyone to move my body... Look, Mommy and Daddy, I can move without help!!! And I can fly!!! And I can speak!!! I can scream!!! I am so happy!!! I just have to figure out how to add a splash of sparkly purple into my wings and robe... Yup, always the diva!

I hear that my family will bring my old body back to my homeland, back to Puerto Rico... You know what that means? Soon I will also help them enjoy nights full of stars and the sweet caress of salty wind. That... is my gift to them. I love you all. I love you... Always.

PS Love. Love everyone with all your heart. Live intensively, enjoy your family... and love.

"Por el campo voy al amanecer
cuando el sol despierta y resplandece...
Y su tibio calor me despierta el anhelo
de una vida limpia y sana...

Sube la montaña, caminante,
lucha por vivir y no te canses
porque el sol que infunde el calor
te dará su fuerza y valor.

Caminemos siempre adelante
lucha por vivir y no te canses
porque el sol que infunde el calor
te dará su fuerza, caminante!"

-Deedee's song & lullaby... Theme from the cartoon Remi.
_________________________________________________________
 
Deirdre Valeria Medina Rivera
Aug 17 2007 - Oct 22 2012
Earned her wings at 4:55am

Funeral Services in NJ and in PR will be announced in this blog.
For donations towards funeral expenses go to our GO FUND ME page.
_________________________________________________________

Sesame Place Halloween Spooktacular

Thanks to the Variety for Children Foundation I was able to enjoy  an awesome afternoon at Sesame Place! I remembered it well from last Summer... but what a surprise to see everything decked for friendly spooks! There were princesses, faeries, warriors, fraggles... I loved it! Me and my sister joined the fun as pirates! Arrrggggghhh!!!

It is a bit far, so during the way I fall asleep (power bap!) and my sister ate, played, read, screamed, and slept as well.

We arrived around 1:30pm. It is my usual schedule... I am happy that after all my mandatory respiratory care (which takes 2 hours every morning), and then an hour of travel, I arrived to one of the best places around here! Oh, I still recall that VIP Summer day... That's exactly how a diva should be treated, thank you very much!

Mommy was really excited when she realized the whole place was filled with depictions of the Count. Yup, that was predictable... the Count is her favorite Sesame character... I was just upset that the day turned out sunny instead of cloudy... I left my sunglasses at home, and the sunny day was really, really bothering me. For the most time Mommy hovered my pirate hat over me to protect my eyes.

The sun made me appear with my eyes closed in almost every picture... How undivalike! Oh, well... At the very least there was no extreme cold and it turned out to be a very comfortable afternoon. Gotta love the carved pumpkins all around!

I went to see the Countdown to Halloween show. Daddy kept showering all of us with bubbles, and I was just glad that the sun would not hit me during the show.

Mommy wanted to take yet another picture of me... How strange... With flash. How nice... Ugh! The things a diva has to bear!

The show began and my sister was instantly hypnotized. I control myself, but I did get a bit excited about the fairy Abby... and about Zoe... Gimme a mix of magic and dance and I am a happy camper.

It was a nice show. The songs were classics, and catchy of course. I did not nap at any moment, so yes it was quite good. The count is just hilarious.

 

After the show we were lucky enough to meet the Count in person! He is plain funny... counting Kali... Yes, it is just one tiny terror... And one diva in the room! Me, of course.

I am surprised Mommy did not passed out... What a Count groupie!!! She had a giant smile! We were lucky we met some online friends in person, the Fantel family. Ray's mom took care of taking this family picture, and it was perfect. By the way, Ray turned 4 years old this week!!! Happy b-day!

And of course, after the action, and since my sister insisted on getting on the carrousel, I took a power nap while waiting for her to come back...

The parade took place as my sister was spinning in the carrousel (gosh, the waiting line took almost an hour!), so we missed that one. Mommy was a bit dissapointed, but we figured out how to cheer her up again...

Our next stop was the Count's Un-Haunted Castle Maze. Yup, that lift Mommy's spirits. The place had many dead ends... Well, duh, it was a maze after all... And it had funny stuff... Magic mirrors, talking walls... black and violet pumpkins holding the place together...

There was a fortune telling gigantic trick or treating bag that answered yes or no to your questions. I asked something... And it said no. And then it laughed... I'm still trying to figure out if the fortune was real... or a trick...

My sis had a ball pushing the buttons on the walls. It is funny watching her play, with the unicorn peeking from behind her. If Uni could talk!

There's one black pumpkin. For some strange reason, Kali kept going to each one of them, kneeling and hugging them. Things that make you go hmm...

Here you can see her trying to drag Daddy so she could reach a black pumpkin. My sister is so weird...

I liked this diorama with Oscar. I feel so at home hving him around! I get where he comes from...

From the maze we headed towards the Elmo's World show. The show was packed, so Mommy stayed with me, and Daddy seated with Kali a bit far from us. This time it was not about friends, but about Halloween. Kali went in instant trance mode.

Here's a picture from my point of view... See Daddy and Sis? And the big red one! No, it's not Santa, geesh!

Mommy was too busy with me, and was a bit late when she realized Elmo had hugged Kali. This is exactly when he backed away, as he sang and danced.

Then Mommy tried to capture him showing me the treats pumpkin, but we were too close and she almost beheaded him!
 

LOL Well, she did behead someone, Pirate Telly Monster. But hey, this guy is just too tall.

There went the infamous trio: Mr. Noodles, Telly Monster and Scarecrow Elmo. Oh, by the way, Elmo explained everything about scarecrows. Cool stuff.

And Kali kept watching her hero until he faded away...

By then it was 5:30pm, and we knew we had to head home. I had a blast, but it was time to go. Never fear... I'll be back!

I had fun, but I definitively was glad to be on my bed. I was so tired! Mommy snapped some pics as she loved my pirate outfit. Well, I know... It is very hard for me not to look good... What can I say, the camera loves me.

Oh, and just to be clear, this is NOT my official costume... Oh, no... This is just a trivial, normal costume for fun and play. For the real day I will don my real costume... Ohhhh, I am so excited! I can't wait! But that one is a secret... For now... I think I will go through some of the costumes I have, and dust them off a bit. This pirate outfit inspired me!

So... The day wrapped up happily. I keep realizing how fortunate I am to get to spend so much time with my crazy family... I see so many people take for granted the small things that spices up life. This is it. I am not taking anything for granted. Life is precious, and each second is wonderful and amazing. I thank God everyday for all I have, for my life, for my family and for everyone who meet me and decide to take me into their heart.

I am at peace if this is as good as it gets. I have it all: I have love all around me, and inside-out.

Starlight's Boo at the Bronx Zoo

On Saturday afternoon we re-visited the Bronx Zoo as Starlight Foundation hosted an evening of Boo at the Zoo. We arrived a bit late so we focused on the areas that I did not see before: The Children's Zoo area, and the Aquatic Birds area. I had fun (especially with the "chivitos"), learned a lot, and definitively hope to return and see the other areas... The place is so big it ain't funny!

My sister kept running towards the entrance, thinking it was funny... Daddy grabbed her and somehow managed to place her in the prairie dog's tubes. I was trying to avoid the light...

I definitively enjoyed the shaded forest dioramas. Here I am watching the monkeys!

I can't deny I liked this pond. So many ducks! My sis was going crazy saying "quack, quack".

One of mom's favorite animals: A skunk.

Kali stopped running to actually enjoy the turtle. She was quite excited about it. Me, I liked it... but I love my little Turtle Tuck even more.

I am not a fan of snakes, but my sis definitively is... at least if they are behind a thick glass window.

Another turtle... smaller and in a dryer environment...

We reached the area with a horse and a donkey. They minded their own business.

My sis and her goose affair... I heard one pecked her mouth. She was lucky, those birds are so vicious they are used as guardians in some places. And still, she looked for them... Bird kid...

And after the goose came the rooster... She is definitively a bird lover. I prefer milder, bigger animals...

Like these three goats. Now they were simply delightful. Granted, they want food... all the time... but who can question their cute factor?

Hmm... The "chivito" that said hello to me many times. Awww...

Hera's minions appeared out of nowhere, trying to stay concealed but watching Mommy. They always follow her...

This other one was quite open about persuit.

We arrived at the aquatic birds exhibit. The pond outside features many flamingos. Loved them!

Many open dioramas inside the exhibit house. It is fun to see the animals won't get out of their habitats... "Going out there, to the cold hallways where crazy humans wander? No way!".

Mommy is not a bird fan... I only saw her being excited about the snow owl. It's good to see at least she humor us enough so we can have fun with things she's not that crazy about.

Penguins in the cold aviary!!!

This gotta be my favorite bird diorama.

Kali was curious about a spinning wheel with penguin facts, "It's tough to be a penguin".

We reached a big fountain, and just when we were about to go see reptiles a siren filled the air... announcing 5:15pm, get ready to pack and go!

So.. We took our last glance at the fountain and the gorgeous buildings...

And this was the view outside on our way home. I sometimes wonder if people take the time to enjoy God's creation... I know I do. The sun going down looked quite breathtaking!

And so, another adventure came to an end. I was happy to get home, I immediately snoozed off. From what I hear, everyone snoozed off. It was a good day, but exhausting. Now, we had Sun and Mon to recuperate... Today I did not have class (it's Columbus Day). But I did have my OT come in and make me work for a little while.

This new week promises to have many surprises... Wow! I am definitively believing that good things come to those who wait! The Make a Wish people made contact today, so news should be available soon... I am so excited! This year has been beyond special, beyond anything that I imagined that I would be able to do! So many firsts... so much still to accomplish! And I just won't back down. Thank you, God, for allowing me to experience all these things. I know the best is yet to come!