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.

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

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.

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.

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.

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.

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...

Mommy