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.

Monday, October 21, 2013

One Year Ago

A day like today, a year ago... We had decided not to go to the Sesame Place after all, to leave it for next week. Our diva was not pleased, but found some contempt in the plans for the week ahead of her... Oh, the big plans... Everyday she was to dress-up as someone different, and her beloved teacher had so many projects in store for her! Just mentioning Mr. Farina was enough to cast a happiness spell on our diva. Not only him, but the therapies were to pitch in. And in the middle of the week she was going to attend her first official Halloween Trunk'n Treat... She looked forward to busy weeks, especially the promised long trip on a train... to go meet Pocahontas and Mulan. It did not matter that we would not see Scuba Santa (what had become an unlikely family tradition). We were going all out and about, and she loved the idea... 2012 was the year for our diva to go places, explore, discover... she went so many places, and she loved it! You could just see it in her eyes... She was no longer a prisoner between four walls. Ever since the Newark Museum's Summer Camp in 2011 our diva took new life. She grasped every moment, and she lived a happy life.

A day like today a year ago I spent a normal afternoon in our diva's bedroom. I got up and down changing all her stuff from the bed's ceiling to the walls... making space for the new crafts. I also insisted on her tasting some old movies like Charlie Brown's Great Pumpkin... Oh, Deedee hated it! Not enough action. And she really complained at it... In the end she enjoyed some Kailan and Wonderpets, and all was well. She had spent a Sunday afternoon being lazy, watching movies, having mom hovering all around in the room, having Kali coming in and out with all her dramatic crying. And she was happy with all of this, because she knew she truly lived in love. Deedee was a demanding diva whose charming innocent spunk only serve to grant her a unique personality filled with strength, courage, daring, thoughtfulness, sassyness, curiosity, and a unique thirst for embracing people's souls. Deedee's heart was broken too often by people she believed in... people who promised to be there and who would suddenly stop showing up. Her heart was very sensitive, and under her rolling her eyes and saying “whatever” we know it all hurt her deeply... We ponder so many times if maybe that was the equation that made her give up...

Sometimes just mom and dad and an annoying sis is not enough... Sometimes people promise so many things, and in her case they just did not deliver. It is sad... I understand completely what she must have been feeling... She put all her trust and all her faith and all her believe in birds that would just fly away... no strings attached... Her broken heart showed so often although she did try hiding behind all her other interests and adventures... But we knew... It was no wonder why she would be so excited and happy about her school time. Mr. Farina was her best friend for more than two years, he believed in her, he knew she was no dummy and treated her as he would any other kid, he challenged her, and he was genuine. In a storm of so many people promising and coming and going, he was the rock that was always there... In the end the right kind of people flocked around and gave a grand promise... but the storm that went on before affected everything. It is the part of the equation that you cannot control... People come and go. No one gets attached... People are just doing their job... But for a little girl that had limited access to the world, who had to be homebound most of her life... those people were her world and she held each and every one of them very dear and close to her heart. Oh, Deedee.... at such a tender age you experienced what I have experienced my whole life! Only a few actually take a moment to waste time on you... Only a few are true. In today's busy, expendable world... we are oddballs that held the beliefs of honor, faith, friendship and love too close to our hearts. I know it hurts me so deeply... So I can imagine how it was for you, my sweet child... I know you understood everything all too well... And still you hoped and were ready to forgive and start over.

It has been one year since I last checked on you, peeking at the door as Daddy was setting up everything for your nightly respiratory therapy. There were no problems... You had just finished watching a movie... You were a bit sleepy, and excited because next day was Monday. The room was ready, you had a bath... And I went on to check your sister, who oddly enough had fallen asleep in the room next to yours. All was fine for a Sunday night... The clock hit 8:00pm and so I went to the living room to see what was new on TV. Daddy was in the room with you, and I expected him to finish and come over so we would watch the Walking Dead episode of the week... I put Once Upon A Time, and wondered if our costumes would arrive on time for Halloween... Our diva wanted to be Pocahontas yet again, but she gave in to being Mulan for a change... Daddy was going to dress-up as the Hun leader. Kali was going to be Aurora and I was going to be Maleficent. It was going to be fun... And in a split second our lives turned upside-down, our hearts got shattered... And our precious diva was gone.

It is all a horror movie that has no ending. All the scars left by this event show surface healing, but the wound is just too deep and just won't heal completely. There is always the alternate realities, the what if's... What if I had just stayed with her in her room to do her hair as I always did on Sundays? What if a nurse had been there for the weekend shift (an extreme rarity)... What if Daddy had warned me that he was going to the bathroom (he always did... we were very psycho about Dee being alone)... What if we had gone to the Sesame Place that day, arriving as we always did... maybe we would have cheated destiny... What if... What if... There is no point on the what if's... No reminiscing on what if's will bring our beloved diva back. And no what if prevents the images of the things that took place after the EMT people arrived, after Dee's was taken to ER... After she was taken to PICU... Nothing stops the horror of living in the flesh all that we saw in just hours... minutes... seconds... Nothing stops the horror of how the people that surrounded us handled the whole situation... Through this nightmare the people who so many times helped save Deedee's life acted as if she had been cattle, and there was no acknowledgment or consideration based on who we were and how much they knew us (so many years basically living in that same PICU... The whole staff knew us... That night they decided to treat us like strangers). Pieces of a nauseating puzzle... where a child you love more than life is carelessly packed for tests in front of you, and only one person who really doesn't know you and is not even of your religion asks the other coworkers to show some respect and wait for a priest as I wished (and that nurse was a Muslim)... Nothing hurt as bad as that white wrap all around her head and face... covering her eyes... People don't understand... People don't even start to get... We fought for this child, for her life, for her quality of life, for her right to be a girl and discover and feel what all girls should feel... And we see such ending unfold before us... Not a peaceful ending... Not an ending engulfed in love and warmth... Deedee deserved better. People don't understand it is not that she died... it is how it all happened, it is the aftermath of when it happened... It is the cold modern system that is double-faced and with a heart of stone. One year from that night my skin still crawls with disgust, powerlessness, anger... and the movie keeps playing itself no matter where I am, no matter what I do, no matter how big seems to be my smile. It is there, in the back of my mind... It all could have been different. It all was a horrible, devastating event as it was... there was no need to add to the darkness... My diva deserved better.

I had the chance to fix that wrong three days later, when I was allowed to see her body at the funeral home... and she had been dressed-up as the warrior-princess she will always be. I combed her hair, getting upset at the fact that they had cut it for some reason... I added her pink strands, and the lovely Mulan crown. Deedee was all about looking fabulous no matter what, head to toe. So I did her nails in her favorite design (pink and purple stripes). I placed her plush friends with her, faithful companions that helped her through so many hospital stays... starting with Mr. Lyon... ending up with Meeko. She loved sunflowers as it reminded her of Pocahontas' fields, so I brought in the mural that I painted for her birthday and added some sunflowers... I knew she would love that... I've told her so many times how proud I was of her... but I told her in ear again, one last time.

One year ago my heart was ripped apart, and although I tried mending it there is one whole... from the missing piece. Nothing is the same. From the sour taste of the cruel reality of Spinal Muscular Atrophy, at least a silver lining is seeing: We had the chance to meet amazing people during our journey, and all that amazing people helped us bring forth a better memory through the gathering that we held in Bayonne, NJ for our Diva. I have no words that can describe the feeling of seeing in just one room all the people that one way or the other touched Deedee's life through her 5 year journey in New Jersey. Most of them I battled for Deedee's rights... Some were supporting her cause for long... Professionals, acquaintances, friends... It took my breath away to see how all differences vanished and there was time to come see her, and think of the wonderful things she did for them... and thanks to them. Thank you all, especially Mr. Farina for bringing so much happiness to our little girl... We hold that little paper ghost ring as a priceless memory. Thank you Ms. Melody, for two Summer Camps that restored our daughter's “I can do it” attitude. Thank you Little Airplane but the Wonderpets... without those singing critters-heroes Deedee would not have had the will to get better so many times! Thank you Mashaela for bringing up Deedee's sassyness for so many years. Thank you Gail, Margot, Joan and Rose for believing in Deedee. Thank you Roz and Marie for being true friends even a year after.

A year ago, at 8:15PM, our world ended. I did not understand that at the moment, we thought there was hope... Her body was kept alive for a few more hours and so the official time acknowledged by the system is 4:5

5AM... It was at that time that the heart stopped forever and I asked the doctor to stop trying to bring her back as it was useless... Time has run in such a way that it all seems surreal. Our family has been trough much in a way we never fathom. The worst part of the changes was loosing Deedee, then moving to Puerto Rico thus leaving our NJ home... Then moving to FL chasing a promise of starting over that landed us in a homeless shelter so at least we could survive... And survive we did. Right now we are living on our own, working, and Kali finally has a daily routine. We now battle for some stillness as we really need time and peace so our shaken lives can begin to grasp what is our next step... Surviving seems to be our mantra, as there is nothing left to do. Deedee was the answer to all our questions, and now we need to regroup and force a change of focus. I foresee that the rest of our lives will be about surviving... nothing can replace the joy and completeness that Deedee brought us. Nothing can replace her.

As we look into the future we see our Diva fluttering around us, guarding our steps... inspiring our lives and filling us with the realization of what really matters. And what really matters is invisible to the eyes... I love you, my sweet Valkyrie... Live on!

Monday, October 7, 2013

Fairy dust

This is the time when a little fairy dust turns all surroundings into something better because of you, my little diva. The new journey that began on Saturday is both beautiful and daunting... I see everything around me reminds me of you... I dreaded that at first, but now I see that perhaps this is you letting me understand that you are around me forever and that THAT is a good thing.

It all has been an emotional rollercoaster. I keep crying non-stop, then I smile so much... It is all you... my Pocahontas, my own personal fairy, my warrior-princess. Be at my side, patting my back so I have the streth to carry own... so I can help other families find the magic that you found and embraced through dreams that came true...

Loving you, thinking of you, feeling you always at my side...


Monday, September 23, 2013

11 Months...

Eleven months... The year is closing in, and you used this month to herald its bitter-sweet truth: You left to Heaven, but from there you shine on us and advocate for us and never leave us alone. Even from Heaven you keep on bringing gifts into our lives. We notice everything, little diva, and through our outings it is always a fact that a butterfly always crosses our path and lingers around us... then vanishes as another one comes to call her into another journey... We always think of you and Tabs. It always makes our day whenever we feel you really there, we know... This month you have outdone yourself. You helped us keep hope and you helped open doors...

We are no longer homeless. This past weekend we finally moved out from the homeless sheler into a duplex home where our family will be able to start a new life. Through the help of special people we were able to get some furniture (big thanks to the Mustard Seed). All has been very fast... But we did not fail to notice details that let us know that you are here with us, and this is a gift you gave us... As we found a toy chest for Kali, and dragged it with us, we noticed it had a small booklet inside. As we carried it with us Daddy took it out... The Tiny Seed. That was your favorite story from the videos... You loved The Tiny Seed because it made you think of your classes and of Mr. Farina. You loved how the Tiny Seed found its place and bloomed. We thought it a big coincidence... But then yesterday Daddy was cleaning out our bedroom's furniture and in the headrest drawers he found some items in between the drawers... A two small kids books: Hope for the Flowers, and Hey Bug! Poems about Little Things. We know how much you loved bugs, caterpillars, flowers... The whole thing was very special to you... you were like a little druid when it came to nature. Then Daddy also found another little thing: A beautiful rosary that was in a tiny envelope... Butterflies, seeds, bugs, and a rosary... You are obviously having fun, being happy and letting us know!

Thank you Deedee for trying your best to give us some kind of peace of mind... Thank you for embracing our broken hearts and filling them with your never-ending love. We are truly blessed, always thank to you... You made us see what matters in life... And you pushed us into a world that is unique... filled with feeling, emotion, vibrant colors and true love. It has been eleven months since the last time I lost myself into your eyes, since the last time you moved your little fingers in my hands... It all has been a blink. I still feel you warmth, and hear your breathing...

The question will always remain... Why did you decide to leave us? Almost eleven months have passed, very fast... very intense months of dramatic changes... yet the singularity of loosing you is the only thing that brings us neverending despair. We know it is selfish of us to want you so... Forgive us for that... But how could us not want you around when you were the flower that brought beauty and serenity and purpose and will into our lives. With you it was not enough to dream about things... we had to make it so. Such a lovely little tyrant whom we loved to wow away making each day special and worth living. The first three years of constant struggle it was our duty to make each day an amazing adventure so you would want more... The last two years of your life were a constant ode to discovery, growth, a constant search for more knowledge, making you free of the constraints that your body and society imposed by default... We enjoyed the best years of our family with you. We were whole and happy with you. You made us proud with everything you did, everything you showed the world, everything you made possible. You showed us how to live a miracle and how to make dreams happen. We miss your smizing eyes so much! Your little sound of glee and approval... We miss everything physical... But we know you walk with us... There are no doubts. And in another blink we will be together again, all of us. Our life on Earth is such a little time... Keep flying around us, keep sending us messages... keep sharing your warmth. We need you, little diva...

Loving you, remembering you, honoring you, and thanking you forever...

Mommy & Daddy

Friday, August 23, 2013

10 Months

Just recently our precious angel would have turned 6 years old. I can't stress enough the fact that these days have been hard. Visiting her little star brought on many emotions... It is difficult to stand and give your best shot at life. We do because it is exactly what our diva taught us when she was alive... Of all people she had enough reason to give up, to simply let go, to live in sadness and shrink inside a shell until it all was over... But she didn't. She embraced life with a smile. Her body aches and issues, and respiratory distress, were not enough to tarnish a zest for life that was simply... breathtaking. She inspires us at all times, she walks with us in spirit, and we know she tries her best to show us little nothings that mean a lot just to makes us realize and understand that although it all seemed wrong to our eyes... she is actually happy, she is free to roam eternity, and she is with us no matter what.

It has been this week, at moments of reaching bottom and finding that hope is beyond thin, that for some reason a butterfly will cross our paths... always lingering to catch our attention, then meeting up with another one at a nearby distance. We can't help but feel our Deedee flutters around, and little miss Tabs comes to get her and keep on having fun. Silly butterflies, lifting up our hearts... strengthtening the belief that hope is just around the river bend...

So it has been 10 months since our little warrior became an angel... Chronologically a long time, but in our lives its all been just a blink of an eye. Each time we blink, so many events come to life... never a moment to catch some breath... The perennial realization that there is no lovely greyish eyes following us around the room, no grunt of disapproval at Kali's screams, no requests for Disney movies or Wonderpets... it all keeps on overwhelming us... We can't tell if it is a good thing or not... All we know is that the life of our diva keeps on being wrapped into the intrincate script of our life, and we would not have it any other way. She speaks to us in a different level... She walks with us being our keeper and our shining guiding star.

Always our Sunshine...

6th Birthday at GKTW

We celebrated Deedee's Birthday visiting Give Kids The World to see the star that they placed in their tower's constellation, in her memory... We hope to be able to do this every year.

After moments of drama as we tried to figure out where her star was, a staff helper found her in their records and showed her position through the live cam. Yes, there it is... It reads "DD the Diva 4 Ever."

That star looked so beautiful to us... Bitter-sweet moment. And to see all the new constellations around it is also striking... So many kids in need of a miracle! So many kids swimming on hope.

While we had drama, Kali spent plenty of quality time with the volunteers. They watched her for a bit, coloring and playing with her.She had a blast.

The smile says it all...

The mandatory carrousel stop... Kali loves it. Deedee disliked carrousels, but she loved horses. The diva would just watch Kali having fun and roll her eyes... We imagine she did the same up there in Heaven's balcony.

 Almost a moment of meltdown, but the Mayor Bunny saved the day!

Kali seated to watch the movie that they were playing in the Boutique... It was Deedee's favorite through 2012: Tarzan. Coincidence?

Kali got a tatoo. She selected a butterfly (we have always connected butterflies to Deedee), and the artist made it in purple (Deedee's favorite color). Sweet little coincidences...

We found a Mulan figurine for her Birthday Cake.

 We set it all up at the Ice Cream Parlor, but decided to go outside to lit the candle and sing the song...

Diva approved... We sang to our precious, hoping she would listen from HEaven, and smile upon us.

And as we asked Kali to blow the candle, The candle did so all by itself. No wind, it just blew off... Sweet Deedee sending a kiss through the bittersweetness of it all. 

We shared the cake with kids that were getting ice cream... And suddenly we realized that although we always celebrated on our own we had never been able to have kids at Deedee's birthday... This was the 1st time such a thing happened... And it all was alright.

May many blessings keep happening to you, our dear diva. May many blessings keep on being your gift to us all...

Happy Birthday, Our Beloved Angel Deedee. We will always celebrate you. The flower that blooms in adversity is the most precious... and has the most exquisite perfume. Your fragance is always around us. Love you, baby girl. Miss you...

Saturday, August 17, 2013

Happy 6th Birthday, My Angel Diva!

It is that special time of the year on which special preparations are made, the sweet smell of frosting and ice cream fills the air, a mural and many balloons are placed in the living room, a table is propped with goodies and gifts, and a surprised diva that dresses up in her favorite attire rolls next to the table to mesmerize her eyes into the flickering candles... The preparations always included the endless trying to do video-conference with friends and family, the cellphones lined up for singing the birthday song... Our small family of four together in the living room... Mom, Dad and little Kali fluttering around the Diva with endless attention, endless proud smiles... And the Diva loved it. Her eyes smized as she knew how important she was for us... she knew love in every sense. People from all over the globe would send their love to her... Her godfather and her godmother were always on the lookot to make her feel extra special even through the physical distance that separated us all.

This year our little big girl would have turned 6 years old. This year her birthday celebration would have been all about Mulan. We know that all signals headed that way... Today we face the big emptiness that our physical lives have... We cannot hear her hums, we cannot see her eye-rolls or her excited eyelashes batting constantly... Today I cannot spend a long morning braiding her hair with pink neon hair, doing her nails, dressing her up... Today I cannot bring home a cake made to her taste, I cannot witness her expression of awe as she rolled over the living room and saw the mural that I made specially for her... I cannot take pictures of her in front of a lovely Mulan diorama, and I cannot ask our nurse to take pictures of all of us... for the scrapbook. Today I cannot hold my diva in my arms and kiss her dearly telling her how proud her Mommy is of her, and how close we are to a cure... Today I cannot feed her dreams of running in a field of sunflowers, and of becoming an animation artist...

Deedee was the flame that lighted our path in the middle of the chaos. Fierce, stubborn, courageous... and at the same time so fragile and vulnerable... Her Wonderpets obsession fueled the fact that she understood very well the power of doing the right thing, the power of service, the power of being together to face any challenge. She understood so much more than people grasped... She was a young girl with an old soul, with plenty of foresight that was both a joy and something so scary. She was sensitive to everything, and would accept every happening as a gift. She lived in virtue, showing to all how there is nothing impossible, that there was always a way to succeed, that there is no point on giving up. She looked forward to many projects, and no matter what she would always find a way to sprinkle your life with glitter and sequins and butterflies...

Deedee, may your wings have a special sprinkled glow in your birthday. You are the best thing that ever happen to me. You made my life better in so many levels... You were my greatest teacher, the most important lessons in my life came from you. I hold you always within my heart, and I miss you every second. You inspire me... And you inspire so many! Come shine on us as we remember and celebrate you. 

My lovely Diva. My baby girl. Happy 6th Birthday... Many kisses... All my love.

Tuesday, July 23, 2013

9 Months

It has been 9 months since Deedee went to Heaven. So much time, yet it still feels as if it all transpired just seconds ago... It all is too alive... The failed visit to the Sesame Place the day before... she cried because we turned back home and I just tried to make her stop... after all, we would visit for the whole day on the next weekend. She fussed for a long time... almost as if she knew that it was her last chance to see it all in its Halloween wonder. She was all dressed up as Pocahontas, and she wanted to have fun. It was the intention, but we got lost on the way and after the middle of the afternoon arrived we decided to leave that adventure for the other weekend... She cried until night arrived.

It feels like it was hours ago... the morning had been Daddy's business. He did all her respiratory therapy and she was bathed and dressed up. She was quite content. I went in during the afternoon to rearrange her room while she watched some oldies but goodies... She did not like those movies... She complained and rolled her eyes as I spoke to her. And she was quite upset when I dared to take her decorations from her bed... after all, she had made them with Mr. Farina... and no one could touch that stuff! She complied when she saw how I placed everything in the wall next to her bed, and when I reassured her that the week ahead was filled with fun and surprises... She needed space for her new Halloween crafts! And she would dress-up every single day as all her favorite characters... She was so excited about the Trunk and Treat invitation! It was going to be her first official Halloween outing, she was going to enjoy having kids her own age all around... 2012 was a year of breaking barriers and for her to try everything. She was thrilled, looking forward to the new adventure!

Just hours ago... I just finished her room, placed one of her favorite movies and walked out of her room. She was just fine, looking at me with the corner of her eye... It was nighttime, and she knew her respiratory therapy was to begin. Daddy went in and prepared everything around her... and asked for a moment to take a “potty break”. She didn't mind, she was watching her movie...

Just seconds ago, her Daddy screamed as he found her pale, bluish, non-responsive... He tried everything to make her react... He called me in the middle of it all... I called 911... They arrived... All too fast... All too sudden... All too surreal. No horror movie will ever match what we went through that night. Nothing can match;30 pm to the depth of all we felt, all the images in our heads, all that happened through the time from 8:00 PM to 4:45 AM. We had no idea that she would not pull through... She was intubated, but somehow she was stabilized. She just seemed to be resting, after a big scare... as she did more than 50 times through her short life... No one told us she had not been medicated. No one told us that her body just seemed alive because of the machines. I stayed with her through the night and Daddy had to go home as the little sister was just too much in the PICU and there was nothing else to do but watch and wait... To this day I cannot believe that they allowed him to go home knowing she would be done any second. They did not warn us about it at the hospital... yet the staff knew. They all knew. To this day it hurts because we were there for so many years, and we believed in the staff and their compromise... And they knew they could tell us the truth in black and white. That night became a snowball of lies... It should not have ended that way. We should have both been there when her body finally gave up. I had to ask the doctor to stop trying to revive our precious Diva... I said: Stop. I knew she was not there anymore... but to this day that “stop” breaks me... That stop hurts me as a thousand knives through my heart. That stop changed everything, forever.

It has been 9 months... of anger, of loss, of frustration, of sorrow, of wandering... Why everything happened as it did? Why couldn't she go in peace, surrounded by her loved ones... Why would she go just when she finally was beginning to break off her shell and show everyone all she could do... an aspiring animation artist, a visionary, a positive force that had no boundaries and that would not let her body stop her... Why instead of a loving final memory we had to deal with a blood-fest, then a bitter coming home... and then just plain twisted turns of fate. I wish I could feel or say something hopeful, anything that would make it all appear as an event that had to happen maybe for the better... How can it be better? Better was having our Diva with us. Better was the 4 of us, celebrating birthdays and Thanksgiving, Christmas, Baptisms, Valentines, UN-birthdays... Better was getting into her bed and falling asleep at her side. Better was the challenges we faced, and conquer. Better was loosing myself in her bewitching gaze.

There is no better for us. Although we know that there is everything better for her as she is now an angel and in the presence of God... there is only contempt for us... not a better. Better will come when we finally reunite again and forever... Until then... Know that you are always missed, always loved... always wished for. You made everything not only better but best... sparkles and sequins were optional. Life is harder every second... because of the bleeding heart that must keep on pumping... against all odds. The final prize: To hold you in my arms, in a most beautiful day.

Nine months to be subtracted from the countdown to make it so... I love you Deedee.


Saturday, June 22, 2013

8 Months Without a Diva

It is unbelievable, but 8 months have passed... People think 8 months is a long time, and by now we should be fine and dandy with what happened. Most people don't even know what has been going on in our lives ever since that awful night in which we lost our most precious... What sums up all events? Well... The worst moment in our life stays forever in our minds and is engraved in our souls, since then nothing is the same, and our lives are not getting better anytime soon. We cannot get over the unfairness of our Deedee's passing... and we are appalled at the lack of empathy from our closest friends and so-called family.

Facing distress as we have, and still moving towards the idea of at least some peace for our other daughter's sake is a daunting task. Our worst moment was loosing Dee... no recovery from that is possible. We hope for some patches of silence, and not even that is granted. Our little family keeps on being together... Kali, daddy, mommy, and angel Deedee... but our quest for finding our place in this world is very taxing, very unnerving, very restless. We lost more than our daughter, we lost our home and our core. We lost many material things that cannot be replaced because we don't have the means to do so. We cannot stand on our own for lack of money, lack of a proper job, lack of a roof, lack of real support, lack of channels to make the change we need.

In 8 months we improvised a funeral, we moved to Puerto Rico, we cleaned up and made better Auntie's home, we could not get a job, we decided to try our chances in Florida as there was nothing to loose... Acquaintances gave some help, but loose faith on us thinking we were doing nothing when in fact we were looking for jobs and help all the time... All the time... We've had no rest. We had no rest back in New Jersey for five years, and we've had no rest all this time here in Florida. In the end we've witnessed the difference between what people seem to be and what they really are. In the end the disappointment has been overwhelming, especially when we know how we have been all our lives, always willing to service others, always going above and beyond our call of duty... We really did not deserve all this. Deedee's passing was the punch that threw us on the ground, and all other events are the kicks and punches that keep us from standing up. We understand now the true meaning of “only the good die young”. New Jersey was unkind but spoke the truth to our face. Florida has been the unkind experience hidden in a nice colorful wrapping...

On top of it all lies the constant absence of our little diva. Going over pictures we see there was no sane reason for her to want to go... She thrived. She was alive and making her dreams come true. Her innocence kept her from letting things get to her... She always wondered, she always wanted more, she always was a delight... Her sassy bossiness amused us, and foretold her leadership... She was meant to do big things... Watching the video of her funeral, listening to the priest from New Jersey, set one fact straight: The biggest task she would achieve started when she went with God.

Deedee, a little girl that brought together so many people from all over the world... She was a living lesson of the power of love and living proof of all the things girls could do. She dreamed big, and lived her dreams. So much to learn from our diva... so much she keeps inspiring on us... so much we miss her... Gone too soon. Nothing brings the joy that we felt when loosing ourselves into those big "smizing" eyes. Deedee... Please make things right from up above... You are always within our hearts. You are always missed.


Sunday, May 26, 2013

Seven Months

Dear Deedee:

I hope that you have been enjoying your permanent vacation from Earth. I think of you, flying around enjoying the sights, enjoying the wind and the beauty in which now you walk... being able to speak as loud as you want, being able to run and jump and seat and stand and play... I think of you smiling at all times, rolling your eyes when you find something absurd, your eyes trembling a little when you find something amusing... I think of you enjoying every flower, every sunrise, every sunset, every raindrop, every trait of nature... I think of you convincing other angel kids that the Wonderpets are the most awesome thing, that your secret identity was being Pocahontas and that you know every Zdisney and VeggieTale song by heart. You keep trying to convince the “Boss” that you know just how to make communication with humans more effective, just by networking and getting on Facebook, Skyping a bit and keeping blogs. And you are certain that you had the best idea for an animated cartoon, and you still think you can inspire something on someone so it gets done...I think of your sassyness and cleverness, and I know that everyone in Heaven must be having a ball whenever you are around them, sprinkling glitter on everything “just because” you are convinced glitter make everything prettier...

I know that your journey really began when you had to leave us. This was the warmup to the greatest adventure you would have... and I know you were so ready for it! With all you did here on Earth in what seemed 5 short human years you warmed up to all the core ideas that would shape your destiny. It is true. It all has just begun. You are not just watching from afar, you are scheming higher things of higher purpose... with touches of glitter of course. Your will will inspire many deeds, and will open many doors so it all gets done. You are making God proud, and you make us proud. I know you are a busy bee, and in your infinite timeline for being you will make many miracles happen... just as you did before, but at a higher scale. I hope you will let us know when you decide to lift the curtain so we can also enjoy your works of art... I trust your inspiration will give us direction and purpose. I believe in you, my angel and my personal rainbow... my bringer of joy and possibilities... You showed us nothing is impossible, and nothing is far fetched.

Knowing all this comes easy to our minds... and it is the big patch that covers the deep hole in our hearts... My angel, we are happy that you are happy and doing so many things... but being without you has been a constant nightmare. We love you so much, and we miss you so much... You departed to go to the greatest college of them all... and left an empty nest in which nothing can ever take your place... The halls within our hearts display all pictures of you. We take comfort in all that was done, in all you achieved, in all we achieved together... but that comfort is fleeting when the realization of your warmth being absent hits us at night... when there are no breathing sounds from you to cradle me to sleep... when there is no single gesture in the dark that tells me your yes or your no. We don't want to drag you down, we want you to be happy and go on... It is just... hard... Very hard... And we hope that now and then you can actually allow us to know you are here with us... We know you are, but feeling your presence is so important to us... It is all that is left until we all meet again for once and for all.

Bring on your inspiration, love. Help me make all promises come true... Help me do that big project that you know was all because of you... Help us to keep on being strong, keep on being your little sister's guardian angel... keep on being our light in the dark...

We love you. We miss you. We believe in all you are and all you do.

Beyond the end of time.

Wednesday, April 24, 2013

Just a Kiss and a Smile

It so happens that after much nights and days without answers and without dreams I finally get to see and feel the most wonderful thing in life: Deedee's smile. She not only smiled, but she talked, and she moved her arms to place them around me... And you see, this is just more than I expected by now.

I've been asking for just one dream, as a sign that everything is alright. Every day I wake up disappointed at the fact that no answer would come, and every night I would go to sleep thinking of her... asking for an answer... I just got up, living my answer. I am breathless. My heart is pounding with such strength, and although all I can do is cry and I just hate that I cannot do what I set out to do... I feel much gratitude and thanks for finally, after 6 months and 2 days, I get to know my beloved Deedee is fine... and happy... and not alone.

I dream that I was running late for a class, and I was arguing about that at home (oddly enough, I was at my aunt's house). As I was going to get out, I just said out loud very frustrated: “Just forget about all this, I must go and see how she is. I can't stand not taking care of her. I just hate all this... no one else can suction her right, no one else knows what she wants... I cannot do this this way. I must go see her!”. I got in my car, and drove down the road.

There is a corner house with a garden that I've always liked... second right when you get to the suburb where my aunt lives. Well, this house had a peculiar owner in my dream. I arrived calling out for her, an old lady that I know well. She seemed to have been waiting for my arrival. I frantically called out for her, but she was already out and had opened her gate. This lady was very dear to my sister, I called her Doña Isabel. She was my sister's guardian for so many years... And she was all about caring so much for everyone...

Anyway, Doña Isabel was waiting for me. She smiled. I was surprised at her being there but did not put much thought into it. “Where's the nurse? Where is her? That's it. I've come to take her. This just doesn't work for me. I need her in my house... I hate leaving her here so a nurse cares for her”... She let me pass, by patted my back saying “Not just a nurse”.

As I went inside I just saw Deedee, and she was in a recliner. Her head seemed bobbed to a side, she seemed to be sleeping. Instantly I went to her, to fix her head. I was so upset her head was like that, it was not right to keep her away open... and then I realized she had no mask. She opened her eyes and look straight into my eyes. I was stunned, as she moved her head so she was straight. She giggled and then she smiled... She smiled as she used to smile when she saw her Wonderpets. She smiled as she smiled back when she was just a baby... And although I couldn't understand well what she said, she spoke. She lifted her arms to hold me, and was so happy to see me. We just shared a long embrace, and I just heard her whisper: “I knew you would come”. I see at her left the shape of a nurse... a shape, I could not recognize who it was. At her right, there was Doña Isabel, who placed her hand over Deedee's shoulder. And she just said”You see she is well?”. I nodded, looking at Deedee, puzzled. “But, look at you... You are talking! And moving! How did you did this? How? You are coming with mommy. We won't be separated again. You are coming with mommy”.

I felt shaken... I feel like crying endless tears... Her smile, my final answer. There is no better way to start a day!

I looked around, still feeling empowered by the decision to pick her up and take her home. But as I looked around I realized... she was not there. I was not even in what was my home... Reality settled in. It was a dream. It was a beautiful dream. Last night I did not ask God for a sign or a dream... I just told Him please take care of my little one... let her know I love her”. Guess what? He did.

I love you Deedee. Always together. Always one.

Sunday, April 21, 2013

Six Months Later...

Time has gone by, faster than anyone expected. Six months ago our hearts broke forever. Our little butterfly flied away, leaving behind a world of confusion, loss, barrenness... We know all the beautiful things that she may have gone through after her departure... We know she flew into the light and was welcome by the greatest love there is... We know she was given wings and she now has no boundaries, no limitations, no pain, no illness, no fears. We know she loved nature and now she is part of it all, enjoying cascades and dancing lights and the oldest, biggest trees. She is now able to watch dawns and sunsets, to see all kinds of people and places. She is now everything she ever hoped she could be... beyond her own expectations, beyond her divaliciousness. Forever five... forever innocent and awed at everything that crossed her way... forever a song in our hearts, forever the fuel that ignites our lives bringing inspiration and meaning... Yes, we know all this, and we believe all this with all the strength of our hearts. We smile because we know this is a given truth. Knowledge fuels our logical actions and our "going on". Logic... keeps us together. And knowledge is the rock that our family's foundation always shared...  People say we are strong. People say we are amazing... People say we have done so much and gone so far, especially given all circumstances that surrounded us... So much praise... all because of the knowledge of who you are in our lives  and where you are now... guiding us, protecting us, inspiring us, leading us, comforting us... So much praise...

Our hearts are broken beyond repair. It's either smile or cry... We go on because we have another little one who needs her parents, and who needs much love and guidance... We go one for her, and although many think we were crazy to do as we had, we did as we had because there were no other options for the little sister... We feel we can live in a cave, and we would rather be away from it all than have to face the daily "nothings" of normal life. There is nothing normal about us. There is nothing normal in our thoughts and our dreams and our expectations. We feel crushed. We feel we failed. We feel life goes on... but it does without us. We feel people don't really grasp the horrible reality of living your life completely for someone... leaving behind everything... learning step by step what real love is... learning step by step what life is all about... and then in a second that someone is gone. Our normal is at another level of awareness... Living, breathing each day without her... hurts. Seeing how treatment and a potential cure for her terminal illness unfolds... hurts. Watching how our beloved peers survive, and miracles keep them alive and possibilities are all spread around them... hurts. It is a continuum of hurt that pierces your soul, engulfs your heart and presses it so hard... and then sneaks up in your mind and haunts you with the images of the so many what if's that were left incomplete. There is no mending our hearts... We smile, because if we cry the rivers would drown us. And in the middle of our despair, we ask ourselves: "What would Deedee sat about this? What she would want us to do?". Oh, we know those answers very well... She would want us to live life like she did. It is that simple... But we don't have instructions on how to make a broken heart live life to the fullest. Deedee... if only you would send us that handbook!

Six months. Deedee has worked some miracles in our life. She makes sure that hope is not lost, that holding on to the knot at the end of the rope actually saves our lives. She must be fluttering around God at all times, telling Him how sparkles make everything better, and how much she misses us. He must send her away to get a small break, giving her the task of looking out for her family... And we imagine she must be so happy doing so! Things are finally starting to move so we get that new beginning that we need... A good job will soon secure a roof for our family. That alone is the biggest blessing of all, after 4 months of being homeless. The gift of caring people around us is another blessing that we appreciate and are grateful for. The gift of keeping our family together and making the little one smile so genuinely is another blessing we are grateful for. The fact that something makes us go forward, re-energizing strength for efforts... re-focusing priorities and life... is another thing we are grateful for.

God has been very busy in our lives. He always was, and He always is. We may not see it right away, but He has a sound plan. And He knows how important it is for us to have angel Deedee around... He knows we need her presence, her aroma, her whispers, her music... her self. He knows that she holds our dreams... our will... our happiness. We are always a family of four. It has been six months and we still don't feel she is gone... If we listen during the silent moments, we'll hear her... opinionated, sassy, know-it-all Deedee... our beloved Diva.

Our broken hearts will be whole when we hold you in our arms again. Until then... keep making magic in our lives. Keep painting smiles in our face, and creating rainbows in our souls. I don't forget the promises... Give us the courage and energy and will to make them so...

Mommy & Daddy

Monday, April 1, 2013

Meeting Stella at GKTW

Our family had the delight of meeting an old friend of Deedee, Stella, in person! Stella and her mom, Sarah Turnball, have been of constant support through all these years. Stella is just as sassy as Dee was... apparently that is a common trend with SMA kiddos... they KNOW that they are the boss.

We all took a ride on the local train. As you can see, Stella had a nice view in the back. Kali had lots of fun, and we all know our diva was flying around not too far.

Kali showed off some engineering skills using building to construct high buildings. She was very helpful with the lady on the "throw a fish to the penguin" stand.

We all took a spin on the carrousel, and remembered how our diva did not liked to ride it at all. Like her mom, she would get dizzy... Kali is quite the oppossite, she loves riding the zebra and the unicorn.

Deedee got a star that marks the moment in time in which she would have had the star anyway as she was granted her Make a Wish last year... The big plan was for her to take a train to Florida, stay at Give Kids the World, and then meet Pocahontas and Mulan. Sadly, that dream did not come true... but Dee had many other dreams fulfilled and we know she did so much in her short life! 

We are just happy that she has a place among her other SMA friends, a little detail that gives us some happiness... She is our star, and she will always guide us. It is just nice to know that there is a place were we can go to honor her memory.

Deedee's star is 563134.  Her star is near Sophia's star in the castle's tower. Stella's star is at the main hall of the castle.

This is the main entrance to the Castle of Dreams. We had a dream of bringing Dee here to leave her mark and letting the world know that she existed, that she mattered, and that she would do great things. She did great things indeed... reaching the hearts of so much people around the world (even people from Finland, India, Indonesia, Russia and New Zealand! And right now, even if only in spirit, she keeps on bringing miracles into our lives... and whispering sweet plans and projects that she trusts we will make come true in her name.

Viva la Diva! Always present at our side. Always loved.

Saturday, March 23, 2013

Portrait of a Diva

Portrait of a Diva
Oil Pastels, 11x14
March 22, 2013
Artist: Vivian Rivera
In loving memory of my oldest daughter, Deirdre Valeria.

Friday, March 22, 2013

5 Months

It's been five months... Five months... 

Through the silent middle of the night a distant sound echoes in the wind... Just one sound, just one beautiful sound that said so many things at once. Whenever I heard it I knew, yes you were awake. And I would go stay with you through the night until the sun heralded the day. Whenever I heard it I knew that yes you agreed and all was fine.

But now only treacherous memory remains of such echo... and instead of bringing a comforting thought, it just brings the embrace of loss... coldness... ghostly shadow that only floats around me reaching out yet bringing no solace, no consolation... Gentle tricks brings bliss as the dagger goes deeper within. There is no stopping the bleeding that pours through the heart that daily kisses the thought of you. There is no stopping the numbness that wind tries to take away as it playfully caresses my cheeks... There are no words that can stop the tears that my soul keeps shedding each dusk and each dawn... as there is no light and no shadow in which your lovely sound... oh simple sound... echoes... to bring me home.

Saying I miss you falls short of all I feel constantly, at all times, in all ways... Saying I wish you were here with me falls short of what my heart feels such mercy would make it whole. Saying I'll see you again can only comfort what reason and logic must hold.

A world in black and white... A world with dreams reaped from breath... A world that may be just enough and just fair... but never perfect as perfect you made it... Yet I do hold one last dream, that just the right dusk I shall open my eyes and hold you again in my arms. Never to let go.

Never to let go...A gift from the Shadow. And so I'll keep my search for Eldorado.It's just around the river bend...

I love you, my sweet diva.

Friday, March 15, 2013

Deedee's Star

Deedee became our star almost 5 months ago, shining bright and guiding our path... But on Thursday night she somehow handed to us the star that she would have gotten at Give Kids The World if she had made her Make a Wish trip last December.

We are deeply touched that Deedee was granted a star, in memory of all she was... and because she would have been there anyway if things have been different. We are proud that her name is now among so many kids that have come to GKTW for their ultimate wish... She is already a star, but having a tangible symbol of what she is now will allow many to remember everything... and to keep fighting. This star is an idea of her, of her dreams, of everything she stood for.


Deedee, you will always be the flame that burn inside our hearts fueling inspiration and will. We love you deeper and more strongly each day, and we know that we will all be together one day... one beautiful day. Many hugs, baby girl.

Sunday, February 17, 2013

Just Pocahontas...

Dear Dee:

Not yet that time of the month in which we review what has been going on since you left... But had to tell you just how much we miss you and how we hoped for things to be different... Just yesterday we all talked so casually about a simple thing, going out to one of those famous places to have fun. And I turn to your father and say: “Well, we can do it. After all it is you and me, and Dee is the only one who pays, Kali goes in for free...”. That awkward moment when you realize that what you say, and really hope for, is just not possible... We feel you with us, Dee, wherever we go, at all times. We still see our lives as we planned it, with you. The fact that your body is not here makes it all very different in the eyes of the people... And we know that, big deal, you are with us anyway... you will always be with us watching and rolling your eyes when you see how stupid we can get... But still, in my heart... I see us getting four tickets, not three.

Today I woke up with no desire to do anything at all... It has been weeks of full throttle. It has been cleaning and fixing and working on that house... Then coming here and starting over the job hunt, and college, and the whole move... It all has been one thing after another and no time to sit down and feel... I am so tired and getting so worn out. No one knows all the things we had to do and still do, and all that still is ahead. There's just no time to stop and whine. There's just no time to let things settle or to dwell on things past and future to come. Today I felt like sending all to heck and just breathe. So we had the idea to go to a nearby mall. Something simple. Something common. Something sensible and fair, and low budget yet with an entertaining factor... Off we went. We got there. We tamed Kali's fits... We went to that favorite store of mine and ended up with a little something I ca use for my job hunt... And then we decide to venture into the Disney store. What a big mistake... I was greeted with the beautiful summer dress of Pocahontas, and automatically my eyes went to that necklace and earring set that I got you, Dee... for your birthday... and that I forgot to give you... You looked so pretty as Pocahontas for your birthday, and I just got involved on taking pictures and making you happy... and running after Kali whenever she took Miko off your arms (you got so angry at that)... That earring and necklace set got so ignored... and came up as I had to clean up your room... still on its package... I could not bear to be in that store. All that I have not cried all this time began there... That store brings up the best of memories of you... and the hard fact that you are not with us. And all around us people smile and are happy... Oh, Dee... My heart plunged.

Cruel beauty. It is all cruel beauty. I had to get out of there. I felt as if air had been taken from me. It hit me then... everything became about you... everything I did was for you... The little things, the big things... all were for you... to see those big hazel eyes of yours smize. Without you here and now, everything has become an unbearable void. It literally hurts being without you. Memories are not enough to stop the hurt. Kind words from people actually fuel rage because you were not suffering when you were with us... and no, things are not better now... and no you were never a burden... and yes you may be free now but you still had so much to do, and you were free in your own terms... No words can bring solace or any kind of consolation. You lived life to the fullest, you made all your dreams come true... you made our lives better and meaningful. You were the rare flower that bloomed in adversity and conquered all. You brought back music into my heart. You brought back belief in miracles and hope for humanity. You did so much! And the same way you were so important in our lives, my pillar of dreams. In you I saw all of my dreams coming true. And in one second, you were gone... One second, a second that became the greatest nightmare in our lives...

Nothing tops that. Nothing will be as terrible as loosing you the way we did... Nothing can make that big wrong right in any way. We feel it was so wrong... we feel you were to be wit us a bit longer... We were not ready, we did not fathom... And so, we still are numb to that reality. Numb until Disney slaps our faces with a pretty Pocahontas dress, and jewelry that goes with it. My dear Dee... my brave warrior... my courageous princess... my sassy diva... There is no book on how to live on without you. Going on... we may get there... but is a half-happy thought, filled with half-possibilities. Our smiles hide the deepest pain... We keep on sailing, we keep on hoping... we try to seek a new cause in your sister, and at least do something about it. But it all feels pushed by having no other choice. As usual things happened and we did not have a real say on them... our only solution has been taking those happenings and trying to go with them. We are trying to keep on making you smile, Dee. If you are here with us, you know that. We are trying to do our best to cope. It is just too soon... And we love you so... We will always love you so...


Wednesday, January 16, 2013

Shining Bright Above Us All

Our Dearest Star,

We decided to let your light guide our path towards a horizon were we can be the family that you always knew, a family united against all odds and who lived in wings of love. We've been through big storms, none compared to not having you with us... but big enough to try our faith in happiness and in having hope... We look into your eyes and we see how you made everything possible. How can we not try to do just that? And so, with you inspiring us to reach out for our dreams and give it all we've got now we embraced another journey.

We left behind Puerto Rico as we search for inner peace. Our family will always be a family of four: Mommy, Daddy, Kali & Deedee. It doesn't matter if we can't see you, we can feel you. You always walk with us. We tried bringing what we knew to our families in the island... We don't really know if our message was internalized, but we leave hoping that somehow respect, truth, faith, and love are restored and renewed into everyone's hearts. It is what our diva taught us... It is our lifestyle. We can only hope that somehow the people that we love learn that fact...

Our small family lives without drama and without the cares of what now we can call the "normal" people... We will never be normal, or fit in. And that is fine. We have very different priorities, being together and sharing all lessons we have learned can be difficult when harmony is disrupted by fear or hate or ignorance. Better move on that allow what makes us special to be tarnished. And so... a new adventure begins.

As long as we are together, home is where the heart is. Our hearts are with you, so as long as you are walking with us we will always be at home... Just the four of us, facing the world's biggest challenges, taming the biggest dragons, exploring new worlds...

We love you so much, Dee... We will keep on making our own destiny, living what we preach... You know the truth, you know our hearts... We hope to make you smile every day that is ahead of us... We hope to make you proud.

Changes are good... no matter how hard and difficult. Changes bring growth... lessons... Changes sculpt our souls... May changes sculpt us all into a masterpiece in which you can bask your eyes... May your wings tickle us often. Keep on shining bright above us, being the sentient light that guides us through the shadows. You have the most important duty in our family, love... Keep on making us proud.