In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Thursday, December 20, 2012
Deedee's Christmas Tree
This is Deedee's Christmas tree. Of course, this is the ideal we pictured... our diva enjoying its light and its purple and bright pink decorations (her favorite colors). She loved lights everywhere, as well as razzle dazzle. She could stare for hours... and we know that her imagination wandered to far away places where everything was just perfect...
It is a very sad Christmas for us. The diva is not physically with us... At least we know that her wish of walking in perfection and being surrounded by the brightest light came true. Here on Earth we remember the sweetest candid wisdom of a little girl with an old soul... We miss her... Hoping our diva sees this, and smiles...
Our two girls... An angel diva, and a happy-go-lucky tiny terror... May the diva guard us and signal the way we are to follow... We look in the sky looking for you, little star... Shine bright!
God: Thank you for our precious gifts, for the unforgettable memories, and for the ongoing inspiration that your miracle brought into our lives. Forever changed, forever touched.
We love you Deedee!
Thursday, November 29, 2012
MJ's Memorial For Our Diva
The SMA Queen, MJ Purk, made this memorial right away when Deedee passed away. MJ is very special to us, has always been our inspiration and we know that Dee looked up to her.
From the beginning she helped us with her insight and wisdom, she is a very courageus lady who also battles SMA type 1... yet she always finds time to help all warriors that cross her path, as well as she always remember the angels and has the personal task of creating a memorial video each time one of her SMA brothers and sisters earn their wings.
We always watch all of MJ's memorials. We always cried as whenever we looked at all the angels we also saw Deedee in their eyes... You will notice most of the SMA kids look alike: Same expression of fearless wonder and happiness, deep eyes that enthrall and mesmerize. We knew Deedee could one day have her video... We never expected it to be so soon.
Thank you MJ, for all you mean to our family, for all the details you had for Deedee, and for keeping hope alive in all that you do.
From the beginning she helped us with her insight and wisdom, she is a very courageus lady who also battles SMA type 1... yet she always finds time to help all warriors that cross her path, as well as she always remember the angels and has the personal task of creating a memorial video each time one of her SMA brothers and sisters earn their wings.
We always watch all of MJ's memorials. We always cried as whenever we looked at all the angels we also saw Deedee in their eyes... You will notice most of the SMA kids look alike: Same expression of fearless wonder and happiness, deep eyes that enthrall and mesmerize. We knew Deedee could one day have her video... We never expected it to be so soon.
Thank you MJ, for all you mean to our family, for all the details you had for Deedee, and for keeping hope alive in all that you do.
Deedee's Memorial by Erika
Erika is one of Deedee's groupies. She started following our diva's adventures 8 months ago. She created this memorial that sums up our diva's life...
We thank Erika for this lovely gesture. Although I create many things for Deedee, it has been very hard to actually do anything with the pictures, besides stare at them and wonder why all of this happened and how the diva is doing in her new gig...
So, to everyone who loved the diva... Enjoy!
Thursday, November 22, 2012
A Diva's Farewell: In Her Homeland
Deirdre, our diva, arrived to Aguadilla, PR at 12:30am on Saturday morning. She took the flight from Newark, NJ at 8:30pm. Mommy and Daddy and Sis were in that flight, too. The voyage home was swift, peaceful and with no incidents. She reached her destination, and soon was ready for her next show... her last show. She kept all details mostly the same, following show-business tradition, but this time some sunflowers also decorated her sleeping place. And this time Mr. Lyon and Beach Ming Ming joined the crew of her faithful friends...
The diva silently welcome friends and family. Slowly but certainly she met in person so many people that have followed her path from the beginning... She watched in glee as so many who constantly prayed for her went to her and kissed her cheeks. Support and love, hope and faith, dreaming and wishes... Each kiss held a different gift that the diva took with a silent smile and eyes filled with happy disbelief.
She imagined herself running through a sunflower field, playfully running and hiding and surprising all who tried to reach her. She imagined herself taking the long trip through a river, facing the river bend and then taking the path less traveled... the path she would discover and make her own. She made her dreams come true in so many unlikely ways! Unpredictable, fickle, innocently brave diva...
She imagined herself as a brave warrioress that would pick the battles that most run away from... She was always willing to sacrifice anything if the cause was worthy. She developed patience and wisdom at such a young age! She knew that working hard earned playing hard... So she would wow the world with her smart sassyness and then go a bit further and show off her skills. You do not need a voice to actually speak up. You do not need to move your body to go places and do stuff.
A five year old has done more than so many people get to do in a lifetime. Her eyes won and melt the hearts of so many... Her deeds were an inspiration to others, and hopefully will go on speaking of who she was and teaching many that nothing is impossible if you believe and fight for your dreams.
Deedee went out to find a way to live, and that she did flawlessly. Her first 3 years were a constant battle to live, but then she was able to reap the fruits of so much hard work. Her world was about creation, art, imagination, beauty, nature, family, and love. She explored, learned, conquered, amazed, enjoyed, dreamed, and really lived.
The diva remembered all her achievements... She smiled, proud and happy. She knew that all that she was and all that she did meant something. She knew that her followers would not forget her for she had reached their hearts and lived within them forever. She said goodbye silently. She closed her eyes, and a tear took shape from her luscious lashes... She knew that this was farewell... She felt the lights all around her fade to black. She knew that was the cue that the show was about to end... She felt sad, as she had to let go of all she was used to, of her groupies and showbiz razzle-dazzle... But then a surge of love and hope took her beyond the darkness, beyond the people, beyond all things material and unimportant... And she understood that what was to come was the most important journey and adventure that she had ever imagined!
Friends and family, here is a last picture of where the diva's body rests. But do not be sad. The diva is not gone. The diva lives on in each one of you... Her big career change landed her a gig in Heaven. Be wary and alert, hold on to her memory tightly, and put in practice everything that you learned from her... After all, you don't know when she will actually be watching you... Make her proud!
______________________________________________
Today
is the 1st month since our Diva went to Heaven. It is also Thanksgiving Day.
We give thanks for the
awesome 5 years that she was here on Earth... She brought the best in
the worst we could be, she keeps on being our loveliest song, our
inspiration.
We give thanks for God let us know and live true love
through her.
Missing you, my diva. Wishing for you... every moment...
every day... Cover us all with your angel wings. We need you so much!
______________________________________________
Tuesday, November 6, 2012
Our Diva's Farewell to New Jersey
Deirdre and her friends, Oct 25, 2012 Bayonne, NJ |
Our diva is saying goodbye. She has special followers, and she decided that before she closed the curtain of her show she would do two special appearances... The first one was in Bayonne. She enjoyed the rich homey ambience of the coast city... it may have made her recall her true home. She took a small retreat away from her family from Monday morning to Thursday early afternoon... We have never been apart at all... not like this... not so definitive... I hated it. I hate being away from my girl, my diva... my baby... But she has a very strong will, and with her it is
always her way or the highway...
OCTOBER 25, 2012
I was very nervous before seeing her. I did not know what to expect... Was she moody? Was she upset? Was she mad? Was she ok? I had been worrying and feeling lost in those thoughts. I don't understand why she wanted to quit the show... just when it was getting to its epic climax... just when the world and science moved towards even more cause for hope for all the causes that she fought for... I was scared of what I would find. But I should have known better. My diva always surprises me with her unique candor and sassyness. As I went in to meet her at the retreat house,
she ran towards me with open arms. She did not speak... she did not have to. Her eyes have always spoken so clearly to me... and they told me that yes... this would be a two part show... it would be that last one... She wanted to move on to other projects... My girl and her projects...
After "divafying" hair, Oct 25, 2012 Bayonne, NJ |
She looked lovely in her Mulan dress.
It was Thursday, and I had promised her to go to a Trunk & Treat that we were invited to... well, mainly that she was invited to. Originally she wanted to dress like Pocahontas, of course... but I managed to persuade her to have a bit more of variety in her life... so she decided that then she would be Mulan. My girl and her
preferred characters... She always makes Mommy proud, choosing relevant role-models. With her it was all either Wonder Pets, or Pocahontas and Mulan.
I wanted to surprise her with a special Mulan dress that I got her, all sparkly and divalicious, with matching tiara and sandals. She got my special gift, and took great
oy in showing it off. It was nice to see how the dress served her well. I know she was a bit uneasy as her hair and nails did not match her outfit, so I told her that I had not forgotten about the details... I had brought nail polish, pieces of her favorite bright pink hair strands, and I let her know I would venture with something
new: a nail polish pen. She looked at me funny, but I reassured her that she need not worry... there was plenty of time to make her fabulous as usual.
After "divafying" nails, Oct 25, 2012 Bayonne, NJ |
Her old nail art was soon gone, and I asked Daddy to get me some olive oil for her hair as it looked a bit dull. I don't know who... or why but someone had cut two inches of her hair... I was quite upset, all this time I had cut her hair and although I am not a hairdresser it did not look bad. Whoever cut her hair... shame on you! Things always happen when the diva sleeps... especially when she stays in that hotel... Well, no more stays there, my angel... Nevermore. Anyway... I straightened her hair and tried my best to untangle it. Daddy arrived with the olive oil, and what a difference that made! I added the pink strands and her Mulan headpiece... Not much is needed for her to rock any look. Deedee should have been a model... but no... she wanted to be an animation artist. Oh, well...
After doing her hair I went on to do her nails. She helped me out holding the nail polish bottle as usual. She had a small towel under her hands so she would not taint her dress. Two coats of shiny metallic blue and then the hot pink tryout. Wow! If I had known that pens really worked this well I would have invested on all the colored pens months ago! It definitively gets the job done, same look as if done by brush, less hassle. Perfect. The diva smiled. Yes, she was definitively happy with her me time.
Deedee the Diva, ready for her last tour. Oct 25, 2012 Bayonne, NJ |
She decided to take a nap, so I went on to try changing her room. I dislike so much cream around her... Her room has always been bright and full of color... She had loved her Pocahontas birthday mural, so I decided to bring it to this different
place so she would keep on sleeping without problems, feeling at home. She liked sunflowers, especially since she did the seed project with Mr. Farina, showing her the parts of a sunflower... and also because Pocahontas loved to run through sunflower fields. So... I went with placing some sunflowers around her... I know she missed her friends, so they gathered at her feet. She knew Linny, Tuck and Ming
Ming too would not miss this. Neither would Mu-shu, Abuela Rosa, Ariel, Pocahontas, Mr. Lion, and of course Meeko (who immediately went on to jump in her lap...). The diva knew that soon she would be in the spotlight, the center of attention... as usual. She smirked but kept on feigning being sleep. Every once in a while she would try peeking and looking at whoever was not paying attention... Oh, she saw everything, and loved every second of it.
The event began with cameras rolling. The crew from Help Me Howard came in to make a special interview about the diva. They wanted to know what her life has been like for
the past year... and what was her message to the world. After we spoke for our girl (following what she had told us to say in her behalf), that segment of the evening was closed.
Deedee and her family, Oct 25, 2012 Bayonne, NJ |
Next came the visits and hellos from so many groupies! Our girl kept sleeping, as she just wanted them to look at her... and beyond her... One by one, friends from early years came in and spoke sweet words to her. She did not feel any need to
say anything... the heart speaks in a language that cannot be described in human terms. One by one each friend gave a gift from their hearts... Each time that a whisper filled her ears she smirked with glee. She knew that she had dne a good job at stealing a big chunk of their hearts... forever. Old friends, new friends...
Everyone went to her... What normal casual life could not do, a single angel did in just one evening: A gathering filled with music,truth, faith and love.
Peronette (the gentle giant), Mashaelia (the longest nurse to be with her), Marie (her latest nurse and friend), Roz (Saturday therapist, helper, friend), Aydil
& family, the Early Intervention crew, the Newark Museum crew, the Rocking Horse crew, the Joseph Lillo Foundation crew, her teacher and best friend Mr. Farina (who kneeled like a shinning knight and presented her with a precious ring), her therapists Margot (fairy therapist, mind you), Gail (we know she was there in spirit), Adam, Marda... The room was filled with the people who really cared and love her... and to witness this was simply breathtaking.We felt the happiness that our diva was feeling just then, right there. Everyone who made a difference in her life felt that too. The evening was a lovely tribute to a young warrioress who fought odds and expiration dates, who fought the system and an illness for which right now there is no cure.The diva smiled as she pretended to sleep among her toys, among her favorites... and among real friends.
For three hours she performed at her best skills. She always loved such attention. She always loved being on stage, getting admiration and standing ovations. And after those three hours she closed her curtain to all her New Jersey fans... It all took place at the peak of her biggest performance. She said a silent farewell that ringed on everyone's hearts, marking all her "groupies" forever. They witnessed pure love and passion for life, they witnessed defiance and sassy innocence. They witnessed a "can do anything" attitude that transcended a frail body, a little girl that bewitched with her gaze and amazed with all she was able to do.
The diva left. She took wings, and her next last stop is her homeland. She looked back only to throw a kiss to all whom hold her dear in their hearts. Her special kiss, a kiss of magic, embedded itself on each of her followers hearts... Knowing her was changing forever. She made sure of that, in her last big spell... so all she taught will not be forgotten. So all she became and touched and made better will not be forgotten. So other kids, with similar challenges, can get the right answers from the right people... the people she touched with her magical self. Be very careful, groupies... the diva watches you from her new home and she knows all you do. Make her proud!
OCTOBER 26, 2012
This is our diva's empty room... empty as her body is no longer with us. We see the big reminisce of who she always was: A bright star that loved razzle-dazzle, cheerfully facing any challenge, always surrounded by inspiration, joy, family, love, and God... The last tour is not done. Next stop... Puerto Rico.
IN LOVING MEMORY OF OUR BELOVED DAUGHTER
Deirdre Valeria Medina-Rivera
"Deedee The Diva"Deedee's farewell to NJ, Oct 25, 2012 Bayonne, NJ |
For three hours she performed at her best skills. She always loved such attention. She always loved being on stage, getting admiration and standing ovations. And after those three hours she closed her curtain to all her New Jersey fans... It all took place at the peak of her biggest performance. She said a silent farewell that ringed on everyone's hearts, marking all her "groupies" forever. They witnessed pure love and passion for life, they witnessed defiance and sassy innocence. They witnessed a "can do anything" attitude that transcended a frail body, a little girl that bewitched with her gaze and amazed with all she was able to do.
The diva left. She took wings, and her next last stop is her homeland. She looked back only to throw a kiss to all whom hold her dear in their hearts. Her special kiss, a kiss of magic, embedded itself on each of her followers hearts... Knowing her was changing forever. She made sure of that, in her last big spell... so all she taught will not be forgotten. So all she became and touched and made better will not be forgotten. So other kids, with similar challenges, can get the right answers from the right people... the people she touched with her magical self. Be very careful, groupies... the diva watches you from her new home and she knows all you do. Make her proud!
OCTOBER 26, 2012
Deedee's Room, Oct 26, 2012 Newark, NJ |
This is our diva's empty room... empty as her body is no longer with us. We see the big reminisce of who she always was: A bright star that loved razzle-dazzle, cheerfully facing any challenge, always surrounded by inspiration, joy, family, love, and God... The last tour is not done. Next stop... Puerto Rico.
IN LOVING MEMORY OF OUR BELOVED DAUGHTER
Deirdre Valeria Medina-Rivera
Aug 17, 2007- Oct 22, 2012
Forever 5 years old
"The Lord is my shepherd; I shall not want. He maketh me to lie down in green pastures: He leadeth me beside the still waters. He restoreth my soul: He leadeth me in the paths of righteousness for his name's sake.
Though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou prepare a table before me in the presence of mine enemies: Thou anoint my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever." -Psalm 23
Tuesday, October 23, 2012
Viewings in NJ and PR
FOR OUR FRIENDS in NJ/NY:
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.
______________________________________
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
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.
______________________________________
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.
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.
_________________________________________________________
Thursday, October 18, 2012
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.
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