Friday, December 25, 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. 


At the hospital, fighting for her life

Newark, NJ

2009 PART 1
2009 PART 2

2010 PART 1
2010 PART 2
2010 PART 3

Deedee's Night Before Christmas

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





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...


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.


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,





I love you, my dear diva.

Monday, August 17, 2015


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


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.

Tuesday, March 17, 2015

What will never be

I know, it is obvious and quite sad... so many things hits us in the face with its innocent cruelty... I just saw one of the most beautiful things... a video of a father and a daughter dancing, the Quinceanera dance. Loved it. It is a Hispanic tradition that even I did when I was 15... This time, it hit me hard in my heart... I just realized I will never see Deedee dancing with her daddy when turning 15 years old... Why something so simple made me cry so much... Why something that even I considered a bit idiotic and silly at the time... I remember I did not want to celebrate mine. I remember I just thought I could use the money for other things... It was not as important... It meant nothing special for me... And now, I saw this and I think of Deedee and everything that won't be... A first dance, a first competition of Spelling Bee, a first Communion, a first Scientific Fair competition, a first poetry competition, a first art's competition, a first day in High School, her graduation, her first kiss... so many firsts that just won't be. All this time I've been stuck being sad about her not being here, about not being able to enjoy her sassy presence... and today this video hits me hard... makes me think of things I did not think before... a future that won't be... the memories stolen before they happened... I am so heartbroken... A dance that will never be...

How I miss you, Dee... You made life so much better... How sad is each day... You were my sunflower field... You were my inspiration... and my hero. I miss you...

Sunday, February 22, 2015


It has been 2 years and 4 months since Deedee earned her wings... and still, it all seems to have happened just last night. The bitter-sweet belief that she is better now is of no true consolation. Life goes on... for the world. We go on... for Kali... but the emptiness at the core keeps staring back at us when everything else is done.

It does not get better. This is a spawn of true love, and true love never dies. The constant is a chained heart that keeps bleeding and is hidden away in a vault... a precious vault in which no one would suspect such hurt and such sorrow. It is all surrounded by the mists, who take you wherever they please... No true destination, no journey to enjoy or in which to reminisce. It all has turned into a constant Land of the Mists, where the Darklord remains a mystery whose name is screamed at you at all times.

Time goes by, and we witness so many wrongs and so many deaths... There is still no cure, though a cure was bragged about... Families keep changing, and at the core there are the little angels that fight this illness with heart and soul... and on top of it all they also have to fight government agencies and professionals with double edged intentions. It just doesn't end... Everything we witnessed as a true story is just a repeated story for so many newly diagnosed families... This breaks our hearts over and over and over again.

I have no words to express my own feelings towards all of this... It all has been too much... Sucking it up and allowing the show to go on has been one of the most demanding, hardest, cruelest things that I have faced... Smiling while being haunted by our reality is a fire that burns deeply... a volcano dormant in the surface yet much active at its core. No thinking while at work, better to not think than to bring all that makes people very uncomfortable. But then, after work ends... It all comes alive as a never-ending loop within a loop... an episode from the Twilight Zone that is not fiction, but a very real horror.  

You are always burning alive within me, my dear love. Never forgotten, always in my mind, always in my heart, always part of me. Until I hold you in my arms forever... and you roll your eyes annoyed at me.

Missing you... and doing my best to keep my promises, little star.

Fundraiser for Baby Eiriam

Hello everyone! Please help with this fundraiser. This baby girl is Eiriam. Right now she is at the Pediatric Hospital in SJ, Puerto Rico. She was diagnosed with Spinal Muscular Atrophy Type 1, the same illness that Deedee had.

Her mom is going through all the things that we went through when Deedee was there... Just like we did with Deedee, they are trying to give their baby a chance at life. They want to take baby Eiriam to the US so SMA doctors can treat her. There is not much help around them. Please spread the word and help with what you can: Prayers are always welcome, donations are also welcome if you are moved to do so.

Baby Eiriam was born on July 2, 2014. She is intubated, She's been fed via naso-gastric tube. Lungs have been collapsing, and she needs expert care right now. Her family has communicated with Dr.Bach, but none of her doctors back in Puerto Rico feel the need to help her come to the US mainland. They feel she has a terminal illness and there is not much to do but take her home and give her love.

As the whole SMA community knows, this is not true. Yes, there is a diagnostic but there are choices for care and means to provide plenty of quality of life. Kids with SMA with a terminal prognosis have been known to live for more than 5 years, many leaving doctors and other professionals baffled.

Doctors told us Deedee would not live  beyond 1 year. She was with us for 5 years and 2 months, and she lived an outstanding life filled with miracles, love and quality of life.

Please help baby Eiriam have a true chance to live.

In Facebook, please contact her mom Mairie Piikeetee Maldonado or her grandmother Magui Perez for any information that you may want to share, or just for the support that they definitively need.

Thank you in advance for your help!

Tuesday, January 6, 2015

Deedee's Last 3 Kings Day... 2012

A new year arrived... We keep on trying to make sense on the unthinkable, trying to smile and count our blessings in spite of our pain. Deedee had the kind of colors that could only bring inspiration and belief. Life without her in our arms just doesn't feel right. Breathing just doesn't seem right... We know that as an angel she is free of so many things, she can do everything now! But we are only human, after all... and knowing is not the same as feeling... I just feel I want to hug my baby girl, and nothing in this world can make that happen. I miss you, my little diva... I love you. Always.