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.

Tuesday, December 31, 2013

At Year's End...


The year is about to end, and the mandatory retrospective kicks in... Many things to be thankful for, and many others that keep on being questionable. This year was the year of the journey to find our place after our world ended. This was the year that we discovered who is really up to give everything for you, and who doesn't. This is the year that we dragged ourselves from our abyss, and rise again as undead... forever changed by the kiss of death that transformed our lives. This is what vampires and zombies must feel after their lives return... after the spark of something unnatural makes them open their eyes and move their limbs and respond to humans... We look like we are the same sentient beings, but we are not. We rise from our abyss with no real notion of why things happenned, what is the final big lesson, why destiny keeps on being fickle and throwing elements of adventure that require much desire and skill that after our world's end seemed simply... pointless.

The journey after the abyss has been its own little adventure. It did fulfill the goal of moving us forward as an unit. Like little good soldiers we went to battle and we faced the challenges... and we achieved a victory that rewarded us with some peace. In the eyes of society we have stepped up, we have demonstrated we are capable of sustaining a home and we are capable of performing all sorts of mundane tasks... playing our part in the great play that is established by modern life.

It is all a blunt joke in itself. We gave wings to a child that was dismissed by the world after she was branded dead by a terminal illness, we gave her a strong will, the ability to dream big, and the courage to defy the system and live with purpose... We defended this child with all we had, against lawyers, against doctors, against the system, against non-believers... We build her a castle in her own home, and delivered her kingdoms. She bloomed in knowledge, in creativity, in dreams... For 5 years we lived for her, we fought all who did not believe in her, we believed in her, and we looked forward to delivering her the tools so she could amaze everyone with all we knew that she could do. We became specialists in the field of her illness... advocates for her rights, researchers, therapists, mentors... we even make sure that she would see us more than anything as mom and dad as we worked miracles in the background... And after doing all this, we have to go through the process of demonstrating we can keep it together, keep a job and pay bills.

Really? Society is that illogical? Yes, we have wowed everyone because we can be responsible and we put family first (and just seeing Kali's smile and be happy confirm that, not everything else we have done). Really... So we survived as good soldiers, and now we are entangled in the little routine that everyone calls normal and all is fine because normal is fine. Work, pay, and move on. Normal empty living is what counts. We are responsible now... We have value now. We are no longer homeless. Success is that we smile and know how to meet deadlines and how to make numbers look good. Success is complying with all of society's expectations, all ending up polished, with material things to show off. Oh, we are sane. Oh, we are not loosers. Guess what, we did not lie... we are useful and educated and can do so much... Success. Alas! We are no longer leeches of any system, and finally we stopped dragging a sad story... We stand. Raise your cups! Let a choir give some shape to some pompous tunes.

We are forever changed. We know what it means to loose everything you hold dear... In our case, it was our beloved daughter Deirdre. Yes, it was also hard what came afterwards... But nothing is as hard as not hearing her machines and her grunts every night and every morning. We were fools to believe in so many who easily put words but whose actions were absent. We trusted with our hearts opened, and our hearts were impaled. We witnessed so many miracles even in the abyss... And we learned that only God never fails. We don't understand why we have to prove over and over who we are and what we do to the people who know us... and have known us for long... We don't understand why instead of believing in us those around us shunned us, turned their backs and chose to close their eyes while we were trying to survive the abyss... We did not expect our journey to be easy, with a road filled with white roses at our feet but we did expect compassion and words and presence... not money, not anything material... We hear so many songs about love and friendship, about beauty and family... So many songs became our hymns through decades... And we believed that those hymns were and invisible oath... and that they were so true... Suddenly the ending of the Fox and the Hound comes to mind and makes so much sense... in a cruel and sad way, because in real like that idea of friendship seems so torn... Forever is a word that is followed by “if it is convenient for me” in modern society. Whatever happened to “inconditional”... Whatever happened to “through thick and thin”. Whatever happened to true love, honor, doing things because it is right, sharing, kindness, empathy, compassion... giving just a call... sending just a message... simple notes in the mail or email... being connected without Internet. Wow... Old-fashioned concepts from an old-fashioned mind... I am getting old.

So this was the year of rising from the abyss... to find a purpose... to return back to life. The journey has delivered many harsh realities, have shown us the real faces of people, have shown us how jaded and wrong is society as a whole thinking they can patch you up after your world ends and then just put a tin mechanic heart in you so you can just be productive and stop bothering and move on. Success comes from a tin mechanic heart that allows you to follow the mandatory chained way... up, up, up... mangling your skin in the way, but replacing it with more tin patch-ups.

As this year ends, I am very happy it finally does end. I am happy that I can still see the difference between what is right and what is wrong, and that I still do what I do as I always have. I am happy that through this all I have always been myself, I have always fought for a higher cause, and I have no regrets. I am happy this year ends with the people that really matter around me. I am happy I got to know who is real and who is not. I am happy I was chosen by God to take care of an angel for 5 years and 2 months... grateful because so many families do not get that chance to get to really know their angel... grateful because my angel made me realize what is important and what a difference we can make in someone's life. I am happy because she was happy with us, and now is around us helping us so we can help others... I am happy because we came out of the abyss being true to ourselves. I am happy we have a home, and a job, and health... I am grateful my small family is always together no matter what. No one is left behind. As the year closes I turn to face the horizon, close my eyes to hear Deedee's laughter, hold my little one and my dear hubby, and step forward trusting that I do not need to see where I am walking into... We will always be together and true, and no one will ever be able to change that. The abyss couldn't. Our times of trouble couldn't. God guides our way anyway. No need to keep looking back.

Let this year be over really soon... I look forward to the blessings ahead of us, and all we can do. Let society have its tin heart. I know mine lives on in an angel... so it beats beautifully.

 

I love you always, Deedee. But you already know that...

Sunday, December 1, 2013

Always with Us


Always with us, always present. A year and one month went away, yet we feel you rigt here, right now. Through the tides your wings lifts us up... The never-ending woe of not being able to hold you in our arms brings on overwhelming sadness... But the thought of you, free of machines, free of a wheelchair, free to do as you wish, gives us strength to carry on. We do carry on, in your honor. We have not forgotten anything. We have not forgotten the promises. We have not forgotten what is important, what we fight for...


You know for your Anniversary we did the wall of your 2012 travels... For Thanksgiving we did the wall for 2011. The images of you all around us gives our hearts a warm embrace... although bittersweet. We miss so much those lovely smizing eyes... We love you, Dee... Always.

Sunday, November 3, 2013

We Did Not Loose

We did not loose.

We gained inspiration to do a higher thing

because of all she taught us.


She lives on through all we do.