Sunday, February 22, 2015


It has been 2 years and 4 months since Deedee earned her wings... and still, it all seems to have happened just last night. The bitter-sweet belief that she is better now is of no true consolation. Life goes on... for the world. We go on... for Kali... but the emptiness at the core keeps staring back at us when everything else is done.

It does not get better. This is a spawn of true love, and true love never dies. The constant is a chained heart that keeps bleeding and is hidden away in a vault... a precious vault in which no one would suspect such hurt and such sorrow. It is all surrounded by the mists, who take you wherever they please... No true destination, no journey to enjoy or in which to reminisce. It all has turned into a constant Land of the Mists, where the Darklord remains a mystery whose name is screamed at you at all times.

Time goes by, and we witness so many wrongs and so many deaths... There is still no cure, though a cure was bragged about... Families keep changing, and at the core there are the little angels that fight this illness with heart and soul... and on top of it all they also have to fight government agencies and professionals with double edged intentions. It just doesn't end... Everything we witnessed as a true story is just a repeated story for so many newly diagnosed families... This breaks our hearts over and over and over again.

I have no words to express my own feelings towards all of this... It all has been too much... Sucking it up and allowing the show to go on has been one of the most demanding, hardest, cruelest things that I have faced... Smiling while being haunted by our reality is a fire that burns deeply... a volcano dormant in the surface yet much active at its core. No thinking while at work, better to not think than to bring all that makes people very uncomfortable. But then, after work ends... It all comes alive as a never-ending loop within a loop... an episode from the Twilight Zone that is not fiction, but a very real horror.  

You are always burning alive within me, my dear love. Never forgotten, always in my mind, always in my heart, always part of me. Until I hold you in my arms forever... and you roll your eyes annoyed at me.

Missing you... and doing my best to keep my promises, little star.

Fundraiser for Baby Eiriam

Hello everyone! Please help with this fundraiser. This baby girl is Eiriam. Right now she is at the Pediatric Hospital in SJ, Puerto Rico. She was diagnosed with Spinal Muscular Atrophy Type 1, the same illness that Deedee had.

Her mom is going through all the things that we went through when Deedee was there... Just like we did with Deedee, they are trying to give their baby a chance at life. They want to take baby Eiriam to the US so SMA doctors can treat her. There is not much help around them. Please spread the word and help with what you can: Prayers are always welcome, donations are also welcome if you are moved to do so.

Baby Eiriam was born on July 2, 2014. She is intubated, She's been fed via naso-gastric tube. Lungs have been collapsing, and she needs expert care right now. Her family has communicated with Dr.Bach, but none of her doctors back in Puerto Rico feel the need to help her come to the US mainland. They feel she has a terminal illness and there is not much to do but take her home and give her love.

As the whole SMA community knows, this is not true. Yes, there is a diagnostic but there are choices for care and means to provide plenty of quality of life. Kids with SMA with a terminal prognosis have been known to live for more than 5 years, many leaving doctors and other professionals baffled.

Doctors told us Deedee would not live  beyond 1 year. She was with us for 5 years and 2 months, and she lived an outstanding life filled with miracles, love and quality of life.

Please help baby Eiriam have a true chance to live.

In Facebook, please contact her mom Mairie Piikeetee Maldonado or her grandmother Magui Perez for any information that you may want to share, or just for the support that they definitively need.

Thank you in advance for your help!