Burglary: Goodbye To Our Precious Memories Vault

Last week, in Tuesday 24th, a thief decided to break into our home. We don't have much... most of all we have have been donated to us. We had nothing so precious for anyone else... The thief took our laptops, a router, our camera and our external hard disk... Simple enough. Nothing else to steal, we are not really interested in owning material things. Our home is filled with toys and pictures... We rather make memories than just sit still... We are lucky that we were not at home at the time, and we keep counting our blessings. Just one thing bothers so much: Loosing the external hard disk.

That little piece of metal and circuits is old. It is by no means fancy. It is by no means cutting edge. But it holds the 5 years of our Diva... Videos and pictures, documenting her illness and all we did for her... so she would have quality of life... Those videos are priceless. Yes, I posted some in YouTube... not even a third of all I had.

The videos that I accrued had a double purpose: Documenting a terminal illness, and demonstrating life can happen and can be beautiful even if you have something like Spinal Muscular Atrophy.  I had documented all about Deirdre. I was working on a web site that would show all, year by year... both honoring her and granting information for other families around the world. I had many things that were unedited and many things waiting for finishing touches. There were plans... there were dreams... I hold each and every memory very much engraved in my heart, but loosing all this treasure has been like unearthing our Diva again and re-living loosing her. It is all a different experience... but it is a loss that cannot be described by human words.

Pictures and videos often say what you can't. I cannot fathom why would anyone do such a thing (although I am very aware that there is plenty of malice all around us) breaking in and actually seeing there is nothing else in the place... Our home is filled with walls depicting Deedee. Whoever went in had Deedee's eyes piercing him/her/them. No one has returned our precious vault, but I do know that somehow some kind of justice must come in the end. Deedee's eyes immerse you in love, and I know that their fury is equally powerful. How dare anyone break into our temple and defile it in such a way? Oh, their lives will be hexed. I am positive that karma will not give them peace until all is restored.

In the meantime... Here we are... going on with the show... putting up a good face and smiling. Our hearts ripped in pieces. Not that anyone really cares. We keep on being surprised by the humans around us... How little we matter to all whom we love so much... We live on being forgotten by all who pledged alliance and unconditional presence. But we go on.

Deedee. I am so sorry this happened. I meant to do so much for you, and this is how I fail you. Now I must start over and try to gather meager pieces... so you are not forgotten. I am sorry, love. I'll do my best to make it up to you. I just hate it will take some more time... I don't understand why so many unfortunate events keep haunting us. I don't understand why something pure and simple must get complicated. I don't understand why so many trials... Why must we get things the hard way? Why we had to loose you...

Guide us, Dee... We are heartbroken, and tired... Keep on looking over us. And tell your Boss to try taking it a bit gentler on us. I know God has a higher purpose, but we really REALLY need a break. How can we do what we are meant to do if we keep on being pushed to the ground by life? We keep standing up... We keep fighting for the good cause... Can we at least have a moment to rest? Just a moment...

15 Months

A new year crawled in, baby girl, and it seems that you are really reaching out orchestrating so many things! All of them featuring a piece of you, a dream of you... you in all your glory.

How not to feel you or hear you or deceive senses and reality... when it is the thought of you that inspires and guides us! You came into our lives becoming our main delight, our main cause, our main joy. How not to feel you being one with the air that we breathe, fluttering with insistence over us as your impatience takes over whenever we think we may do something... or not...

You know how keeping pace with your sister goes... Of course you do... much better than us. We know you look over your sister as a watchdog. You know she can get so easily in trouble...She keeps you quite busy night and day... And you wouldn't have it any other way. You love her zest for life, her energy and defiance. She has the stubborn streak that you had as well... But unlike you she has limited wisdom. Then again, you were always an old soul... You knew so much at such a tender age! You wielded natural wisdom and wild curiosity, all wrapped up in playful charm. How I miss your big blue-green eyes, how you bat your thick eyelashes and how you rolled your eyes at every annoyance!

You have helped us with all your own dreams. And I trust you keep on placing those seeds in my dreams... so they grow getting a strong hold in reality and most importantly... you. Always you being a glue that holds everything together for us... with us. How we love our diva! How we love our demanding and fickle spice of life. A year and 3 months without your heartbeat...

A year and 3 moths that you stand free, invisible to our eyes but right here with us... You stand proud, you place your angel wings over us... sheltering us from complete insanity, and from the cruel world. You are a warrior that keep bringing out the best in the worst we can be. You guard our sleep and keep ever vigilant... Family always comes first.

Keep on inflaming virtue and belief in our souls. Keep on being with us through thick and thin. May we make you smile with each step we take... May we make you proud with everything we do.

Forever loving you, my sweet baby girl... Missing you always.

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...

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.

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