In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Tuesday, June 28, 2016
Friday, December 25, 2015
CHRISTMAS 2015
Another Christmas upon us... It was beautiful when we woke up and Kali said Merry Christmas Mommy, followed by a Merry Christmas Daddy... and then an unexpected Merry Christmas Deedee while looking up to the ceiling. Angel Deedee is always around, with us. Knowing this, and that Kali acknowledges it, may be the only true comfort. Love never dies.
And love is exactly what keeps Deedee alive with us. We did all that we did because of love. Deedee was always surrounded by love. The world was cruel and harsh, but she knew kindness and she touched many lives both nearby and far away...
Life without our Deedee has been a different journey that doesn't quite feel right. We ache to hold her in our arms... to see her thrive and accomplish so many things... Why was she so fascinated by sharks? Would she have become the digital artist that she wanted to be? Would she have turned to science instead? Would she still love purple, three years later? Would she still wake up at 4 in the morning to have mommy sleeping at her side? What new dreams would she have aimed for? How many people would have fallen under her spell?
I miss my diva.
I have no words to describe how much I wish for her, everyday.
Life goes on, but nothing is the same...
This would have been Deedee's 8th Christmas with us. It is her 4th Christmas in Heaven.
Here I leave you some memories from our beloved diva.
REMEMBERING
CHRISTMAS 2007
1ST CHRISTMAS
At the hospital, fighting for her life
CHRISTMAS 2008
Newark, NJ
CHRISTMAS 2009
2009 PART 1
2009 PART 2
CHRISTMAS 2010
2010 PART 1
2010 PART 2
2010 PART 3
2011
Deedee's Night Before Christmas
2012
1st Christmas in Heaven
Mayaguez, PR
Merry Christmas, Deedee.
Keep watching over us... Until we meet again, my little one.
You hold our hearts.
PUERTO RICO 10.24.2015 to 10.26.2015
SUNDAY, OCTOBER 25
FLOWERS AND ANGELS
FOR DEEDEE
MONDAY, OCTOBER 26, 2015
FAREWELL TO DEEDEE
Wednesday, October 21, 2015
3RD Year From The Day You Earned Your Wings
It is the eve of the day in which you earned your wings.
Time keeps running out for all the things I set out to do, places keep changing, people keep materializing and vanishing, dreams keep coming back to inspire and haunt and to lure into belief and hope.
What are we to do now... The forks that divided the river takes us deeper and farther, the waters keep running so fast and with such strength...
Stillness.
Bring us just some stillness.
Bring us time to feast our eyes on your beautiful face and your beautiful eyes... Bring us time to take flight with you and enjoy the world as your eyes now do.
Stillness.
And courage to face each day with a sunrise that just signals a burning star that is so far away yet brings us much warmth...
Warm stillness... Warm cozy, gentle and swift wind that blows clouds of memories that we hold on to as if soft strands of your precious hair were just there waiting for glam and some sparkly pizzazz and colors of rainbows and dreams and unicorns and super-hero pets...
Stillness... Past, present and future in multiples paths playing multiples games and all ending up in just one... One you. One me. One us. One infinity that will always be connected and will always find courage and go on... Raising from the ashes... Raising from what some will see as imminent defeat.
One piece of infinity lived here on Earth is nothing compared to the infinity in which we'll hold each other's hands and in which we'll loose each other into each other's gaze...
We are but one soul. Different lives. Different bodies. Different stages. Different flights. Always one soul.
Always alive within me.
Alway alive in me. Around me. Forever. Peace and stillness...
Three years have been stolen from our human time together... Fly onwards into new worlds, with the freedom and joy you deserve beloved child.
But do come home... In the end,
Understood?
Forever.
Stillness...
...
I love you, my dear diva.
Monday, August 17, 2015
HAPPY 8th BIRTHDAY DEEDEE!
The Lion King: Remember Who You Are
This year Deedee's birthday theme is The Lion King. She loved this movie with passion, and because of it she understood very well what is the Circle of Life. She understood about life and death. And she understood the importance of being true to yourself, and that as life went on after death everyone that seems to go away lives on within us, within our hearts.
Visiting Deedee's Star
We celebrated going to Give Kids the World, checking out Deedee's star. Located in the Potted Galaxy, 563134. We will forever be grateful to the Gaynor Family, who put up a star for Deedee in their visit on 3-3-2013. In the notes she is mentioned as Sofia's sister, who passed away and did not make it to her wish trip.
It is impressive how the galaxies have grown... Our first time there the tower was new, and there were only 3 galaxies. It is all bitter-sweet... Beautiful, but bitter-sweet.
And where can you find Deedee's star? Here, of course...
"Deedee the Diva 4 Ever"
The guardian of the castle.
Inside the magical meadow.
Celebrating Back Home
When we got home, we had a surprise for Deedee. We light up her birthday candle, and sang her birthday song! Of course we had cake!
Kali was happy to assist in her sister's place...
And she blew the candle in Deedee's name.
Deedee's godfather was also here with us.
And here we are, our little family.
May there always be an angel watching over all of us.
May that angel always be you.
Our Diva, our Sunshine, our inspiration....
Happy 8th birthday, big girl!
May all your wishes come true.
May your days be filled with happiness and joy.
May you live in blessings and walk in beauty always.
I love you.
We love you.
Always remember...
Saturday, May 23, 2015
TWO YEARS & SEVEN MONTHS
The simple perfect moment in time in which it was you and us... It is a memory that crawls in the surface of every day, every sunrise, every sunset, every starry night, every second our heart beats. Our picture perfect family soon to be a family of 4 forever... We live on, with you walking at our side... in our dreams... in our hearts... as a perfect angel fluttering by.
Life goes on, being such a simple routine. Wake up, work, eat, sleep... Quite simple. It was all simple before you, and it all stank. Thanks to you simple became quite complicated... but dreams became true. You fueled passion and inspiration and the belief that anyone could do anything. Little you brought a bunch of colorful crayons to our lives, and colored paintings in our hearts of masterful beauty. Little you, who could not speak or move, preached about what is most important in life, showed us that there are no limits but in our own minds, and went everywhere. You demonstrated how chaos can be a bliss, how seconds can matter more than so many years. So many people go on through life complaining and doing nothing but just consume oxygen. You, in just 5 years and 2 months did what so many don't do in a lifetime. You travelled, you learned, you teached, you enjoyed, you grew, you shared, you gave it all... You truly lived. You fast-forwarded a complete life that we can only aspire to... You walked in innocence and wonder, no matter how your fragile heart got crushed every time a human let you down. You never lost faith, you gave everyone a chance, you forgave so easily and smiled so genuinely! Precious little big Deedee, the most thoughtful, sassy, demanding, kind and gentle diva I've ever met.
Mother's day was quite a mix of emotions... I loved to celebrate with you. I loved how we would take you out of your room in a beautiful dress, and place you in the sofa as we did our little celebrations... The last year that you were with us was quite special as you finally could be in a properly adapted stander and actually enjoy it all from a new perspective. We all had so many plans, we all gathered a winning team just for you! We all had our hearts shattered when you had to go... It hit us quite hard. We had a dream of you being with us for so many years... No one was prepared. We were not prepared... I was not prepared. I am still not prepared... I still don't understand why at that very moment when all began to unwrap as a giant gift to you. I still don't understand why God needed you elsewhere when He knew all that you did for us... for me. I know you are now at another level, of so much light and perfection that we can't even begin to imagine... but that consolation is not enough reason to make it an answer. In my heart you are my little baby... I was supposed to help you be. And somehow, it all was twisted into this alternate reality in which the roles were reversed and I did not go first... you did... and life remained changed in a way no one can even begin to grasp.
Here we stand as changed beings, touched by an angel, molded by the most unlikely events, thrown to survive this world of cold routines and faded glory. We are now children kept by our angel guardian. We are now to create a new world out of the ashes left by the anger and rage and loss. She became the parent. She became the one to give everything for us, so we could go on, grow, complete our own dreams, endure, and become in the end as perfect and beautiful as she is. Reverse roles... A little family that will never fit in this society of consumerism and appearances. Here we stand following the teachings of an angel, keeping her alive in our lives with everything that we do and every choice that we make. Promises are not forgotten, they are just taking longer to achieve. It is not easy not being able to hold the most sweet and delicate hand. I miss kissing those soft cheeks, and being followed by the deepest stare I will ever know. We see the little signs... the unlikely butterfly that crosses our path, the cardinal that greets us in the mornings... We feel the presence. But acknowledging everyday miracles has nothing to do with missing you... What our mind knows is of no consolation to our weeping heart. There is a reason, says the mind. Why, is the constant question that echoes in the dark. Why...
Guide and protect us, especially your little sister. She misses you... as we all do. She asked where were you last week. She was lost looking at all the pictures in the wall, and when I asked her what was in her mind she just asked where you were... because you were not with mommy and daddy anymore. That sword went straight through my heart. She's finally realizing something doesn't add up in our home... Deedee is everywhere in the walls. I asked her were she thinks Deedee is. Here. She said that while looking around. I just had to hold her tight. I hope with all my heart that is true, love. You walk with us. You must. Our lives would be meaningless if that was not true.
You are my sunshine, my only sunshine.
You make me happy when nights are grey...
You just don't know, dear, how much I love you.
Please don't take my sunshine away...
Always my sunshine.
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