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.

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.

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.


Deirdre Valeria Medina-Rivera
"Deedee The Diva"
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