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...