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.

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!

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...

Mommy

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

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...

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 6^th Birthday... Many kisses... All my love.