Wednesday, October 22, 2014


It has been two years since you earned your wings. Much has changed, not to the better. You are not with us... That little fact will forever tarnish anything that could be truly awesome. We miss you so much... We don't look for answers as there is nothing that can explain why all happened... And there's not enough words to explain how we feel... how I feel...

The show must go on, and we must carry on. Must. There is actually no true desire in that word. It is all duty, responsibilities... life. We must carry on. Let the face show a smile, let the heart and the soul be broken in pieces. It is how we live these days... Life without you is just not... liveable.

We miss every little detail about you, sweet warrior princess. We love you as strongly as the first day we got to know about you... We love you and we always will.

Know that you are missed... loved... cared for... Inspire us from Heaven. Give us guidance. Give us peace.

Not enough words, my diva... Not enough time...


Monday, September 29, 2014

Bright Star

Here we are.
At the end of September, here I stand... I look up into the sky, to find the brightest star so I find guidance. And there she is, my amazing bright star... shining on us... shining on me. The pain fills me with tears of anger, with unanswered questions, with endless rage. Yet, my dear angel shines on me... trying her best to soothe my spirit, to patch up the bleeding wounds. Her smile, my smile. Her existence my existence. Her silence, my silence... I don't understand why she had to go. I don't understand why, after all our efforts, all of our love was not enough to make her stay. I don't understand if God is just and merciful, why he let this happen... all of this. I don't understand why life makes it so hard for the good people to win but allows evil to prevail unpunished. I don't understand... So many things I don't understand...
My life was taken away the day my little warrior princess exhaled a last breath. She gave me sound purpose, and I gave it all to find a way to make her life whole. I gave it all. I want to honor her memory and do so many meaningful things... yet I am stuck in a mundane life that serves the only purpose of keeping a roof and paying bills. Stuck with the feeling that although it was not my fault, it will always be my fault. Nothing has the same luster. Nothing has the same value or feel. Everything is changed so deeply, beyond explanations... And yet I must stand, and smile, and be an amazing crowd pleaser. Who cares if my heart is breaking every step of the way...
End of September... One year, eleven months and seven days that we walk without holding your hand, or hearing your voice, or gaze into your lovely eyes... Too much time away from real Heaven. Loving you so much, missing you so much... Impatiently waiting until the day I can hold you in my arms again, forever.

Sunday, August 24, 2014

Visiting Our Diva!

Here I am, Deedee, finally... after a year and a half of trying to come visit you... I am happy that I made it, and that I made your resting place a bit more happier. I really wanted to find flowers that resembled you... Sunflowers will always do that, my little Pocahontas...
I was not alone. Your Godmother Maria and your Godfather Steve were there as well... It was thanks to Steve that I reached my final destination. He knew how important it was to go visit you at your resting place... He knew it drives me crazy not being able to go there with the frequency that my heart demands... We all felt a little happiness in our hearts... You.
Your grandmother Edna was there as well. I also know that during the year grandma Millie and your half-sis Amanda, and Alex have visited you. Aunt Gladys keeps you in her daily prayers. It is not too many people, but is people that remember you with love and that did a lot for you while you were alive...
And then, you have so many families that you have touched over the years... Old friends and new friends that reminisce on you, on your life... and that wish you light and happiness and peace. You are blessed with people from all over the world that love you... that care enough to keep you in their prayers.
Thanks to this trip I was able to see Willie, the man that raised me as a daughter and that is always there for me against all odds. I'm always sad about not being near to help him now in his Golden years...
And same goes for Gladys... who is always alone in that house... But I know you see all this, and you visit her regularly, making sure that she survives... You are our guardian angel, and you also guard her. Thank you so much, Dee... for all the light that you bring into our family.
Pictures here, pictures there... Pictures lost, pictures found... Memories that remain alive and burn within our hearts... Your story matters, your memory matters, and in our journey trough life it is you who shows us the way. You are a tool for God's big master plan... And we are obliged to finish up what you began. You live on through us.
And while I travelled to visit you, Daddy and Sis went to the second special place that we have for you... Give Kids The World. They saw your star, your constellation... They reminisce on you, and on the joy that you are for us all. We celebrated your birthday at the same time... And we felt the happiness in you.
Thank you, Deedee, for so many blessings that you bring into our lives... Thank you for sending so many signals and messages this week, letting us know that you are well... that you smile at us and with us. Thank you for being the background music in the movie of the story of our lives... It is you who set the tone, and who soothe our spirits.
Much love... Every day... Always & forever.
Mom & Dad & Sis

Thursday, August 14, 2014

Deedee's 7th Birthday!

On the 17th of August we celebrate the most important day in our life: Your birth! You changed our lives forever, for the better. This year we celebrate you with the lights from Tangled. We know that you are free, and that you are in a better place doing all things that you could not do here on Earth...
Still, we send out to you these bright lanterns as they resemble the warm loving thoughts we keep for you... and the deep desire of having you with us...
It is a bit opposite... it is us who must find the path towards you... but be certain that soon enough we will all be together. And then we will all be home.
I had the privilege of getting to know you... You had many dreams. You had a beauty that the world was not ready for... So young, yet so wise. I am happy you no longer need machines to do anything for you, and that you no longer need anyone's understanding as you are beyond those terms... You were ahead of your time. It must have been frustrating... to say the least... yet you never stopped believing and dreaming. Your thirst for life went on to the end and beyond.
No more shells... You are unleashed. We don't understand but we know that you still have much to do... Your work is not done. You are still to do much through us.
Keep on bringing meaning to our lives... You are our greatest love, our greatest inspiration.
Keep on being our shining star, we see the light... through you.
We remember you...
We miss you.
All those days watching from the windows
All those years outside looking in
All that time never even knowing
Just how blind I've been
Now I'm here blinking in the starlight
Now I'm here suddenly I see
Standing here it's all so clear
I'm where I'm meant to be
And at last I see the light
And it's like the fog has lifted
And at last I see the light
And it's like the sky is new
And it's warm and real and bright
And the world has somehow shifted
All at once everything looks different
Now that I see you
Happy birthday, my sweet little diva, our guardian angel. May we have courage to make your dreams come true.
Love always,

Wednesday, August 13, 2014

On Flight

Hello my beloved angel diva,
Work takes most of the day, and sleep completes the circle... yet there is not a second that passes by without me thinking of you. What if you have stayed with us for a little while... What if we could have completed some of the immediate plans... What if some people have stayed, and other had chosen to be actually present in your life... What if things had not disappointed you and frustrated you as they did... What a long list of what ifs, my little one! But all are just movies that play in the background, movies that make believe so many different paths for you, or about you... All those movies play at intervals, choosing to run and stop and run again... What if... Eternal what ifs that will forever play, as we are forever haunted by the irreversible truth of your absence.
It has been 19 months and 22 days without your heart beating, or your warm fingers insisting on triggering your favorite Kai-lan doll. It has been just too long since listening to your fussy complaints whenever you woke up scared through the night and I heard... and ran to your room to get in your bed, and caress your hair until you would finally go back to sleep. It has been just too long since I last diva-fied your nails with your favorite colors: Bright pink and green stripes. It has been just too long since listening to those songs that drove Daddy crazy... the song of the little ship that could not sail... Mambru coming back from war... the cat stuck at the end of the well... Each time we read or watch the tales that you loved so much, like the Very Hungry Caterpillar, or Up in my balloon, or Them Bones... it all brings back so many memories we hold dear, and at the same time a deep pain that pierces our chest over and over... And each time we pick up a book of The Wonder Pets... what can I tell you that you don't already know, Dee... Wonder Pets are just you. Every little thing has a piece of you, and the good part is that it keeps you alive with us... yet the bad thing is that it also screams your absence...
Time has been the most treacherous creature. Time has moved along, faster than we thought... People say time would make things better, would make it all fall in place. Well, apparently those people have never lost anyone dear... because the more time that passes by, the more I miss you and the more we need you, and the more we have to realize that you are gone and the whole world seems to be dulled from that fact... What can we expect? For those who did not know you, you had to go. And for those that knew you... it was your time. For those that love you, it was just too fast, it is just too unfair, it is all just too much. We don't understand why people who are no good to their kids still have them, how come the ones that care for their kids have to go through so many ordeals... We don't understand why you had to go, when at that precise moment in life things were placed at your feet... and life had so many door opening for you... We don't understand why it all ended as it did... and how come the harshest storm is not over yet... as missing you is a constant blizzard that buries us in pain.
What ifs are just those wishes that can't be, and the true story is a beautiful ballad that keeps playing as we stare into your never-ending gaze... Deedee, how we miss you! How can we go on through life without sharing it all with you... The years with you were in fact the most wonderful years of our life, and all we learned from you is priceless. We knew heaven each time you opened your eyes and smiled at us... we knew hell each time we landed in the hospital and battled for you... The intense living is something that changed us... And it seems no one else understands just how deep it goes... what truly matters to us... and how we suffer in silence. We try to smile for you, Dee, as it is what you would want... You smiled though your adversity. You always looked upon us at the end of all trials and smiled making every effort worth it... You showed us how to go through life, how to battle for life, how to enjoy what really matters. Family comes first. Your beauty intoxicated us, and it keeps on inspiring us... My love, we know what you want from us, and we are trying so hard to accomplish it...
We place one foot in front of the other... We smile for we believe in the promise of a tomorrow where we will all be united... We keep swimming because we have no other choice. Forever being a misfit in a land where love and friendship is barren, and where people just survive at the expense of their souls. We are misfits, deeply changed by true love, forever bleeding... You know this is true, Dee... We look for a North that is a dream, and we go through life trying to live up to what you inspired on us. Every little breath is a deep struggle... moving along... finding the colors... I can only hope that your silent voice will keep guiding us towards the right path, and that the little projects can come true... because of you. I have not forgotten... and I always keep my promises.
Please tickle us with your wings, take away the sadness... We love you so, our little star... Forever missing you... I hope you smile upon the little journey to see you. I look forward to it... Don't ever think that such an important day will not be acknowledge in big! Until then... In dreams I walk with you.
Love, Mommy.

Sunday, May 25, 2014

My Pocahontas

One year and 7 months... Always thinking of you and missing you so much! You made life better in so many ways... Your eyes showed us wisdom and joy...
This week was Disney's D24 special event... "Rock your Disney side!". Well... You rocked your Disney side in every way, so it is fitting that here I show your Disney side. Oh, I am quite surrounded by you everyday, in everything that I do. Bittersweet... although you will always make it all sweeter.
Your favorite was Pocahontas... I know. You channeled the independent free spirit quite well. You were young, but demonstrated many times just how much of a sage you were...
Through the years you rocked Ariel, Jasmine, Alice, and Tinkerbell. And you went to rest forever as Mulan.

But we all know that you were Pocahontas...

Forever and ever.

Until we meet again, just around the river bend...

Tuesday, April 29, 2014

A Year and a Half

No, it is not lazyness or that I have stopped feeling... Days have been swarmed with work and there is nothing else left but answer to the call of duty... It has been a year and half since our beloved diva went on her greatest adventure of all. Many changes, many unexpected events... The fight goes on, our pledge to live for you and to honor your memory keeps driving what is left of our lives. You have to admit that we are trying... and you also have to acknowledge and see that things are not so simple and that there is no one that really understands what our life is like now... Nothing is ever complete. You are missed... in everything we do, in every breath we take without you.

I wish we really had the time to heal, surrounded with caring people who would not mind our endless talks about you. I wish there were more to look forward to... I plan big, but my plans crumble as day to day needs must take precedence to wishes and dreams. It is an ordeal in itself just trying to live life to the fullest when the walls keep getting highuer and each time you get to crawl out of the big hole you get pushed back even deeper. Don't get me wrong, I won't give up or give in... I am just complaining because I am tired of sucking it all up. I am tired of having to march on like a soldier that feels nothing and just accomplishes a mission. So many people waste their lives yet they have it easy... I never have wasted my life... and there is no break. Such is life... Never fair, always an unexpected journey...

We are changed forever. We try to fit into what is called normal, but we do not belong to that group anymore. We experienced something improbable, we experienced something humbling and higuer than us... We can never be the same. We do not see the world like normal people do... We don't see the daily problems as people do... We have priorities that doesn't synchronize with the rat race that society demands just to live. Purpose and aspirations... yes, I have many... But the trap of the normal life that requires following a rat race and just following is just a dead end and a rotting illness. Being forced to do normal just to survive for peanuts and not even feeling a sense of accomplishment is a layer of limbo in itself that numbs senses and thoughts. I am to do much more... And I can't right now... And between the sadness of not having you physically with us, and the anxiety of the randomness of our normal life... How to find happiness, my little mage? You did that trick so easily just by staring into my eyes... My little mage that achieved so much in just five years, moving people's hearts all over the world and being living proof that miracles happen but people just choose not to se ethem.

Your life was a continupus miracle, a continuous ode to defiance and steadfastness. You remain an inspiration to us... You remain the reason why we try to be better, and just do. You lead by being our example, and we know that you keep on doing amazing things in your other life... How could you not? Our guardian angel, our first daughter, our forever.

Missing you so much... Loving you always.  

Monday, March 3, 2014

Burglary: Goodbye To Our Precious Memories Vault

Last week, in Tuesday 24th, a thief decided to break into our home. We don't have much... most of all we have have been donated to us. We had nothing so precious for anyone else... The thief took our laptops, a router, our camera and our external hard disk... Simple enough. Nothing else to steal, we are not really interested in owning material things. Our home is filled with toys and pictures... We rather make memories than just sit still... We are lucky that we were not at home at the time, and we keep counting our blessings. Just one thing bothers so much: Loosing the external hard disk.

That little piece of metal and circuits is old. It is by no means fancy. It is by no means cutting edge. But it holds the 5 years of our Diva... Videos and pictures, documenting her illness and all we did for her... so she would have quality of life... Those videos are priceless. Yes, I posted some in YouTube... not even a third of all I had.

The videos that I accrued had a double purpose: Documenting a terminal illness, and demonstrating life can happen and can be beautiful even if you have something like Spinal Muscular Atrophy.  I had documented all about Deirdre. I was working on a web site that would show all, year by year... both honoring her and granting information for other families around the world. I had many things that were unedited and many things waiting for finishing touches. There were plans... there were dreams... I hold each and every memory very much engraved in my heart, but loosing all this treasure has been like unearthing our Diva again and re-living loosing her. It is all a different experience... but it is a loss that cannot be described by human words.

Pictures and videos often say what you can't. I cannot fathom why would anyone do such a thing (although I am very aware that there is plenty of malice all around us) breaking in and actually seeing there is nothing else in the place... Our home is filled with walls depicting Deedee. Whoever went in had Deedee's eyes piercing him/her/them. No one has returned our precious vault, but I do know that somehow some kind of justice must come in the end. Deedee's eyes immerse you in love, and I know that their fury is equally powerful. How dare anyone break into our temple and defile it in such a way? Oh, their lives will be hexed. I am positive that karma will not give them peace until all is restored.

In the meantime... Here we are... going on with the show... putting up a good face and smiling. Our hearts ripped in pieces. Not that anyone really cares. We keep on being surprised by the humans around us... How little we matter to all whom we love so much... We live on being forgotten by all who pledged alliance and unconditional presence. But we go on.

Deedee. I am so sorry this happened. I meant to do so much for you, and this is how I fail you. Now I must start over and try to gather meager pieces... so you are not forgotten. I am sorry, love. I'll do my best to make it up to you. I just hate it will take some more time... I don't understand why so many unfortunate events keep haunting us. I don't understand why something pure and simple must get complicated. I don't understand why so many trials... Why must we get things the hard way? Why we had to loose you...

Guide us, Dee... We are heartbroken, and tired... Keep on looking over us. And tell your Boss to try taking it a bit gentler on us. I know God has a higher purpose, but we really REALLY need a break. How can we do what we are meant to do if we keep on being pushed to the ground by life? We keep standing up... We keep fighting for the good cause... Can we at least have a moment to rest? Just a moment...

Monday, January 27, 2014

15 Months

A new year crawled in, baby girl, and it seems that you are really reaching out orchestrating so many things! All of them featuring a piece of you, a dream of you... you in all your glory.

How not to feel you or hear you or deceive senses and reality... when it is the thought of you that inspires and guides us! You came into our lives becoming our main delight, our main cause, our main joy. How not to feel you being one with the air that we breathe, fluttering with insistence over us as your impatience takes over whenever we think we may do something... or not...

You know how keeping pace with your sister goes... Of course you do... much better than us. We know you look over your sister as a watchdog. You know she can get so easily in trouble...She keeps you quite busy night and day... And you wouldn't have it any other way. You love her zest for life, her energy and defiance. She has the stubborn streak that you had as well... But unlike you she has limited wisdom. Then again, you were always an old soul... You knew so much at such a tender age! You wielded natural wisdom and wild curiosity, all wrapped up in playful charm. How I miss your big blue-green eyes, how you bat your thick eyelashes and how you rolled your eyes at every annoyance!

You have helped us with all your own dreams. And I trust you keep on placing those seeds in my dreams... so they grow getting a strong hold in reality and most importantly... you. Always you being a glue that holds everything together for us... with us. How we love our diva! How we love our demanding and fickle spice of life. A year and 3 months without your heartbeat...

A year and 3 moths that you stand free, invisible to our eyes but right here with us... You stand proud, you place your angel wings over us... sheltering us from complete insanity, and from the cruel world. You are a warrior that keep bringing out the best in the worst we can be. You guard our sleep and keep ever vigilant... Family always comes first.

Keep on inflaming virtue and belief in our souls. Keep on being with us through thick and thin. May we make you smile with each step we take... May we make you proud with everything we do.

Forever loving you, my sweet baby girl... Missing you always.