11 Months...

Eleven months... The year is closing in, and you used this month to herald its bitter-sweet truth: You left to Heaven, but from there you shine on us and advocate for us and never leave us alone. Even from Heaven you keep on bringing gifts into our lives. We notice everything, little diva, and through our outings it is always a fact that a butterfly always crosses our path and lingers around us... then vanishes as another one comes to call her into another journey... We always think of you and Tabs. It always makes our day whenever we feel you really there, we know... This month you have outdone yourself. You helped us keep hope and you helped open doors...

We are no longer homeless. This past weekend we finally moved out from the homeless sheler into a duplex home where our family will be able to start a new life. Through the help of special people we were able to get some furniture (big thanks to the Mustard Seed). All has been very fast... But we did not fail to notice details that let us know that you are here with us, and this is a gift you gave us... As we found a toy chest for Kali, and dragged it with us, we noticed it had a small booklet inside. As we carried it with us Daddy took it out... The Tiny Seed. That was your favorite story from the videos... You loved The Tiny Seed because it made you think of your classes and of Mr. Farina. You loved how the Tiny Seed found its place and bloomed. We thought it a big coincidence... But then yesterday Daddy was cleaning out our bedroom's furniture and in the headrest drawers he found some items in between the drawers... A two small kids books: Hope for the Flowers, and Hey Bug! Poems about Little Things. We know how much you loved bugs, caterpillars, flowers... The whole thing was very special to you... you were like a little druid when it came to nature. Then Daddy also found another little thing: A beautiful rosary that was in a tiny envelope... Butterflies, seeds, bugs, and a rosary... You are obviously having fun, being happy and letting us know!

Thank you Deedee for trying your best to give us some kind of peace of mind... Thank you for embracing our broken hearts and filling them with your never-ending love. We are truly blessed, always thank to you... You made us see what matters in life... And you pushed us into a world that is unique... filled with feeling, emotion, vibrant colors and true love. It has been eleven months since the last time I lost myself into your eyes, since the last time you moved your little fingers in my hands... It all has been a blink. I still feel you warmth, and hear your breathing...

The question will always remain... Why did you decide to leave us? Almost eleven months have passed, very fast... very intense months of dramatic changes... yet the singularity of loosing you is the only thing that brings us neverending despair. We know it is selfish of us to want you so... Forgive us for that... But how could us not want you around when you were the flower that brought beauty and serenity and purpose and will into our lives. With you it was not enough to dream about things... we had to make it so. Such a lovely little tyrant whom we loved to wow away making each day special and worth living. The first three years of constant struggle it was our duty to make each day an amazing adventure so you would want more... The last two years of your life were a constant ode to discovery, growth, a constant search for more knowledge, making you free of the constraints that your body and society imposed by default... We enjoyed the best years of our family with you. We were whole and happy with you. You made us proud with everything you did, everything you showed the world, everything you made possible. You showed us how to live a miracle and how to make dreams happen. We miss your smizing eyes so much! Your little sound of glee and approval... We miss everything physical... But we know you walk with us... There are no doubts. And in another blink we will be together again, all of us. Our life on Earth is such a little time... Keep flying around us, keep sending us messages... keep sharing your warmth. We need you, little diva...

Loving you, remembering you, honoring you, and thanking you forever...

Mommy & Daddy

10 Months

Just recently our precious angel would have turned 6 years old. I can't stress enough the fact that these days have been hard. Visiting her little star brought on many emotions... It is difficult to stand and give your best shot at life. We do because it is exactly what our diva taught us when she was alive... Of all people she had enough reason to give up, to simply let go, to live in sadness and shrink inside a shell until it all was over... But she didn't. She embraced life with a smile. Her body aches and issues, and respiratory distress, were not enough to tarnish a zest for life that was simply... breathtaking. She inspires us at all times, she walks with us in spirit, and we know she tries her best to show us little nothings that mean a lot just to makes us realize and understand that although it all seemed wrong to our eyes... she is actually happy, she is free to roam eternity, and she is with us no matter what.

It has been this week, at moments of reaching bottom and finding that hope is beyond thin, that for some reason a butterfly will cross our paths... always lingering to catch our attention, then meeting up with another one at a nearby distance. We can't help but feel our Deedee flutters around, and little miss Tabs comes to get her and keep on having fun. Silly butterflies, lifting up our hearts... strengthtening the belief that hope is just around the river bend...

So it has been 10 months since our little warrior became an angel... Chronologically a long time, but in our lives its all been just a blink of an eye. Each time we blink, so many events come to life... never a moment to catch some breath... The perennial realization that there is no lovely greyish eyes following us around the room, no grunt of disapproval at Kali's screams, no requests for Disney movies or Wonderpets... it all keeps on overwhelming us... We can't tell if it is a good thing or not... All we know is that the life of our diva keeps on being wrapped into the intrincate script of our life, and we would not have it any other way. She speaks to us in a different level... She walks with us being our keeper and our shining guiding star.

Always our Sunshine...

6th Birthday at GKTW

We celebrated Deedee's Birthday visiting Give Kids The World to see the star that they placed in their tower's constellation, in her memory... We hope to be able to do this every year.

After moments of drama as we tried to figure out where her star was, a staff helper found her in their records and showed her position through the live cam. Yes, there it is... It reads "DD the Diva 4 Ever."

That star looked so beautiful to us... Bitter-sweet moment. And to see all the new constellations around it is also striking... So many kids in need of a miracle! So many kids swimming on hope.

While we had drama, Kali spent plenty of quality time with the volunteers. They watched her for a bit, coloring and playing with her.She had a blast.

The smile says it all...

The mandatory carrousel stop... Kali loves it. Deedee disliked carrousels, but she loved horses. The diva would just watch Kali having fun and roll her eyes... We imagine she did the same up there in Heaven's balcony.

 Almost a moment of meltdown, but the Mayor Bunny saved the day!

Kali seated to watch the movie that they were playing in the Boutique... It was Deedee's favorite through 2012: Tarzan. Coincidence?

Kali got a tatoo. She selected a butterfly (we have always connected butterflies to Deedee), and the artist made it in purple (Deedee's favorite color). Sweet little coincidences...

We found a Mulan figurine for her Birthday Cake.

 We set it all up at the Ice Cream Parlor, but decided to go outside to lit the candle and sing the song...

Diva approved... We sang to our precious, hoping she would listen from HEaven, and smile upon us.

And as we asked Kali to blow the candle, The candle did so all by itself. No wind, it just blew off... Sweet Deedee sending a kiss through the bittersweetness of it all. 

We shared the cake with kids that were getting ice cream... And suddenly we realized that although we always celebrated on our own we had never been able to have kids at Deedee's birthday... This was the 1st time such a thing happened... And it all was alright.

May many blessings keep happening to you, our dear diva. May many blessings keep on being your gift to us all...

Happy Birthday, Our Beloved Angel Deedee. We will always celebrate you. The flower that blooms in adversity is the most precious... and has the most exquisite perfume. Your fragance is always around us. Love you, baby girl. Miss you...

Happy 6th Birthday, My Angel Diva!

It is that special time of the year on which special preparations are made, the sweet smell of frosting and ice cream fills the air, a mural and many balloons are placed in the living room, a table is propped with goodies and gifts, and a surprised diva that dresses up in her favorite attire rolls next to the table to mesmerize her eyes into the flickering candles... The preparations always included the endless trying to do video-conference with friends and family, the cellphones lined up for singing the birthday song... Our small family of four together in the living room... Mom, Dad and little Kali fluttering around the Diva with endless attention, endless proud smiles... And the Diva loved it. Her eyes smized as she knew how important she was for us... she knew love in every sense. People from all over the globe would send their love to her... Her godfather and her godmother were always on the lookot to make her feel extra special even through the physical distance that separated us all.

This year our little big girl would have turned 6 years old. This year her birthday celebration would have been all about Mulan. We know that all signals headed that way... Today we face the big emptiness that our physical lives have... We cannot hear her hums, we cannot see her eye-rolls or her excited eyelashes batting constantly... Today I cannot spend a long morning braiding her hair with pink neon hair, doing her nails, dressing her up... Today I cannot bring home a cake made to her taste, I cannot witness her expression of awe as she rolled over the living room and saw the mural that I made specially for her... I cannot take pictures of her in front of a lovely Mulan diorama, and I cannot ask our nurse to take pictures of all of us... for the scrapbook. Today I cannot hold my diva in my arms and kiss her dearly telling her how proud her Mommy is of her, and how close we are to a cure... Today I cannot feed her dreams of running in a field of sunflowers, and of becoming an animation artist...

Deedee was the flame that lighted our path in the middle of the chaos. Fierce, stubborn, courageous... and at the same time so fragile and vulnerable... Her Wonderpets obsession fueled the fact that she understood very well the power of doing the right thing, the power of service, the power of being together to face any challenge. She understood so much more than people grasped... She was a young girl with an old soul, with plenty of foresight that was both a joy and something so scary. She was sensitive to everything, and would accept every happening as a gift. She lived in virtue, showing to all how there is nothing impossible, that there was always a way to succeed, that there is no point on giving up. She looked forward to many projects, and no matter what she would always find a way to sprinkle your life with glitter and sequins and butterflies...

Deedee, may your wings have a special sprinkled glow in your birthday. You are the best thing that ever happen to me. You made my life better in so many levels... You were my greatest teacher, the most important lessons in my life came from you. I hold you always within my heart, and I miss you every second. You inspire me... And you inspire so many! Come shine on us as we remember and celebrate you. 

My lovely Diva. My baby girl. Happy 6^th Birthday... Many kisses... All my love.

9 Months

It has been 9 months since Deedee went to Heaven. So much time, yet it still feels as if it all transpired just seconds ago... It all is too alive... The failed visit to the Sesame Place the day before... she cried because we turned back home and I just tried to make her stop... after all, we would visit for the whole day on the next weekend. She fussed for a long time... almost as if she knew that it was her last chance to see it all in its Halloween wonder. She was all dressed up as Pocahontas, and she wanted to have fun. It was the intention, but we got lost on the way and after the middle of the afternoon arrived we decided to leave that adventure for the other weekend... She cried until night arrived.

It feels like it was hours ago... the morning had been Daddy's business. He did all her respiratory therapy and she was bathed and dressed up. She was quite content. I went in during the afternoon to rearrange her room while she watched some oldies but goodies... She did not like those movies... She complained and rolled her eyes as I spoke to her. And she was quite upset when I dared to take her decorations from her bed... after all, she had made them with Mr. Farina... and no one could touch that stuff! She complied when she saw how I placed everything in the wall next to her bed, and when I reassured her that the week ahead was filled with fun and surprises... She needed space for her new Halloween crafts! And she would dress-up every single day as all her favorite characters... She was so excited about the Trunk and Treat invitation! It was going to be her first official Halloween outing, she was going to enjoy having kids her own age all around... 2012 was a year of breaking barriers and for her to try everything. She was thrilled, looking forward to the new adventure!

Just hours ago... I just finished her room, placed one of her favorite movies and walked out of her room. She was just fine, looking at me with the corner of her eye... It was nighttime, and she knew her respiratory therapy was to begin. Daddy went in and prepared everything around her... and asked for a moment to take a “potty break”. She didn't mind, she was watching her movie...

Just seconds ago, her Daddy screamed as he found her pale, bluish, non-responsive... He tried everything to make her react... He called me in the middle of it all... I called 911... They arrived... All too fast... All too sudden... All too surreal. No horror movie will ever match what we went through that night. Nothing can match;30 pm to the depth of all we felt, all the images in our heads, all that happened through the time from 8:00 PM to 4:45 AM. We had no idea that she would not pull through... She was intubated, but somehow she was stabilized. She just seemed to be resting, after a big scare... as she did more than 50 times through her short life... No one told us she had not been medicated. No one told us that her body just seemed alive because of the machines. I stayed with her through the night and Daddy had to go home as the little sister was just too much in the PICU and there was nothing else to do but watch and wait... To this day I cannot believe that they allowed him to go home knowing she would be done any second. They did not warn us about it at the hospital... yet the staff knew. They all knew. To this day it hurts because we were there for so many years, and we believed in the staff and their compromise... And they knew they could tell us the truth in black and white. That night became a snowball of lies... It should not have ended that way. We should have both been there when her body finally gave up. I had to ask the doctor to stop trying to revive our precious Diva... I said: Stop. I knew she was not there anymore... but to this day that “stop” breaks me... That stop hurts me as a thousand knives through my heart. That stop changed everything, forever.

It has been 9 months... of anger, of loss, of frustration, of sorrow, of wandering... Why everything happened as it did? Why couldn't she go in peace, surrounded by her loved ones... Why would she go just when she finally was beginning to break off her shell and show everyone all she could do... an aspiring animation artist, a visionary, a positive force that had no boundaries and that would not let her body stop her... Why instead of a loving final memory we had to deal with a blood-fest, then a bitter coming home... and then just plain twisted turns of fate. I wish I could feel or say something hopeful, anything that would make it all appear as an event that had to happen maybe for the better... How can it be better? Better was having our Diva with us. Better was the 4 of us, celebrating birthdays and Thanksgiving, Christmas, Baptisms, Valentines, UN-birthdays... Better was getting into her bed and falling asleep at her side. Better was the challenges we faced, and conquer. Better was loosing myself in her bewitching gaze.

There is no better for us. Although we know that there is everything better for her as she is now an angel and in the presence of God... there is only contempt for us... not a better. Better will come when we finally reunite again and forever... Until then... Know that you are always missed, always loved... always wished for. You made everything not only better but best... sparkles and sequins were optional. Life is harder every second... because of the bleeding heart that must keep on pumping... against all odds. The final prize: To hold you in my arms, in a most beautiful day.

Nine months to be subtracted from the countdown to make it so... I love you Deedee.

Mom

8 Months Without a Diva

It is unbelievable, but 8 months have passed... People think 8 months is a long time, and by now we should be fine and dandy with what happened. Most people don't even know what has been going on in our lives ever since that awful night in which we lost our most precious... What sums up all events? Well... The worst moment in our life stays forever in our minds and is engraved in our souls, since then nothing is the same, and our lives are not getting better anytime soon. We cannot get over the unfairness of our Deedee's passing... and we are appalled at the lack of empathy from our closest friends and so-called family.

Facing distress as we have, and still moving towards the idea of at least some peace for our other daughter's sake is a daunting task. Our worst moment was loosing Dee... no recovery from that is possible. We hope for some patches of silence, and not even that is granted. Our little family keeps on being together... Kali, daddy, mommy, and angel Deedee... but our quest for finding our place in this world is very taxing, very unnerving, very restless. We lost more than our daughter, we lost our home and our core. We lost many material things that cannot be replaced because we don't have the means to do so. We cannot stand on our own for lack of money, lack of a proper job, lack of a roof, lack of real support, lack of channels to make the change we need.

In 8 months we improvised a funeral, we moved to Puerto Rico, we cleaned up and made better Auntie's home, we could not get a job, we decided to try our chances in Florida as there was nothing to loose... Acquaintances gave some help, but loose faith on us thinking we were doing nothing when in fact we were looking for jobs and help all the time... All the time... We've had no rest. We had no rest back in New Jersey for five years, and we've had no rest all this time here in Florida. In the end we've witnessed the difference between what people seem to be and what they really are. In the end the disappointment has been overwhelming, especially when we know how we have been all our lives, always willing to service others, always going above and beyond our call of duty... We really did not deserve all this. Deedee's passing was the punch that threw us on the ground, and all other events are the kicks and punches that keep us from standing up. We understand now the true meaning of “only the good die young”. New Jersey was unkind but spoke the truth to our face. Florida has been the unkind experience hidden in a nice colorful wrapping...

On top of it all lies the constant absence of our little diva. Going over pictures we see there was no sane reason for her to want to go... She thrived. She was alive and making her dreams come true. Her innocence kept her from letting things get to her... She always wondered, she always wanted more, she always was a delight... Her sassy bossiness amused us, and foretold her leadership... She was meant to do big things... Watching the video of her funeral, listening to the priest from New Jersey, set one fact straight: The biggest task she would achieve started when she went with God.

Deedee, a little girl that brought together so many people from all over the world... She was a living lesson of the power of love and living proof of all the things girls could do. She dreamed big, and lived her dreams. So much to learn from our diva... so much she keeps inspiring on us... so much we miss her... Gone too soon. Nothing brings the joy that we felt when loosing ourselves into those big "smizing" eyes. Deedee... Please make things right from up above... You are always within our hearts. You are always missed.

Mommy

Seven Months

Dear Deedee:

I hope that you have been enjoying your permanent vacation from Earth. I think of you, flying around enjoying the sights, enjoying the wind and the beauty in which now you walk... being able to speak as loud as you want, being able to run and jump and seat and stand and play... I think of you smiling at all times, rolling your eyes when you find something absurd, your eyes trembling a little when you find something amusing... I think of you enjoying every flower, every sunrise, every sunset, every raindrop, every trait of nature... I think of you convincing other angel kids that the Wonderpets are the most awesome thing, that your secret identity was being Pocahontas and that you know every Zdisney and VeggieTale song by heart. You keep trying to convince the “Boss” that you know just how to make communication with humans more effective, just by networking and getting on Facebook, Skyping a bit and keeping blogs. And you are certain that you had the best idea for an animated cartoon, and you still think you can inspire something on someone so it gets done...I think of your sassyness and cleverness, and I know that everyone in Heaven must be having a ball whenever you are around them, sprinkling glitter on everything “just because” you are convinced glitter make everything prettier...

I know that your journey really began when you had to leave us. This was the warmup to the greatest adventure you would have... and I know you were so ready for it! With all you did here on Earth in what seemed 5 short human years you warmed up to all the core ideas that would shape your destiny. It is true. It all has just begun. You are not just watching from afar, you are scheming higher things of higher purpose... with touches of glitter of course. Your will will inspire many deeds, and will open many doors so it all gets done. You are making God proud, and you make us proud. I know you are a busy bee, and in your infinite timeline for being you will make many miracles happen... just as you did before, but at a higher scale. I hope you will let us know when you decide to lift the curtain so we can also enjoy your works of art... I trust your inspiration will give us direction and purpose. I believe in you, my angel and my personal rainbow... my bringer of joy and possibilities... You showed us nothing is impossible, and nothing is far fetched.

Knowing all this comes easy to our minds... and it is the big patch that covers the deep hole in our hearts... My angel, we are happy that you are happy and doing so many things... but being without you has been a constant nightmare. We love you so much, and we miss you so much... You departed to go to the greatest college of them all... and left an empty nest in which nothing can ever take your place... The halls within our hearts display all pictures of you. We take comfort in all that was done, in all you achieved, in all we achieved together... but that comfort is fleeting when the realization of your warmth being absent hits us at night... when there are no breathing sounds from you to cradle me to sleep... when there is no single gesture in the dark that tells me your yes or your no. We don't want to drag you down, we want you to be happy and go on... It is just... hard... Very hard... And we hope that now and then you can actually allow us to know you are here with us... We know you are, but feeling your presence is so important to us... It is all that is left until we all meet again for once and for all.

Bring on your inspiration, love. Help me make all promises come true... Help me do that big project that you know was all because of you... Help us to keep on being strong, keep on being your little sister's guardian angel... keep on being our light in the dark...

We love you. We miss you. We believe in all you are and all you do.

Beyond the end of time.