In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
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.
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...
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
TWO YEARS & FOUR MONTHS
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!
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.
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.
Wednesday, October 22, 2014
2 YEARS
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...
Mommy
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...
Mommy
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.
Subscribe to:
Posts (Atom)




