In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Thursday, August 18, 2016
Deedee's 9th Birthday: Princess Jasmine
Nine years ago, life changed forever when a little miracle came to earth to warm the heart of a lonely spirit. Deirdre Beatrix was born, and the whole world stopped to celebrate her. When she openned her eyes, the infinite sky was reflected on them... From that moment on, there was no better pleasure than to get lost in her bewitching eyes, her bewitching smile, her bewitching self...
Nine years ago, little did we know that the little baby that could would take us in the most amazing adventure filled with drama, love, fear, joy, sadness, hope, horror, and faith. We faced a terminally ill diagnosis, yet proved doctors wrong. Deedee defied the odds, she defied death and she lived on her terms. At 5 years of age she did more and accomplished more than some people do in a lifetime! Sadly, also at 5 years of age her heart was broken beyond repair... and that is just when she decided it was better to let go and be free... She knew that life on Earth was an amazing ride, but a circle of ups and downs and dissappointments that would keep on hapenning especially for someone in her shoes... She knew so many things, wise Deedee... We hope we would be enough for her to rise beyond the trials that she faced, and she fought a good battle for herself and for us. In the end her little fragile body was not a strong enough vessel for such a titanic spirit, and in the blink of an eye she was took the golden chariot towards the Sun.
It has been 4 years since such a sudden departure... It has been an everyday of guesses and what ifs, of alternate realities and dreams, of loss and of belief. Whoever said it would get better... It won't. Whoever said life goes on, it is not the same. Whoever said survival will take over, well, resistance is futile. Whoever said it will get easier, lied. It gets harder. It gets angrier. It gets hopeless. It gets overwhelming. And it all has nothing to do with courage, or loosing faith, or not believing she is with us in spirit and will be with us forever at the end... It is not that. It is the daily nothings that you must do, and that in the depht of your heart means nothing to you because your real reason to breathe is gone and all you can do is endure... persevere... bite the bullet and keep swimming...
Deedee,
Some people gasp at the strength of will we've had because we have not rotten in a dark room... Some people still don't understand why we always talk about you, post your old pictures, keep you alive in our family and our hearts and why we celebrate you... To hell with them all. The good intended "you are so strong" is pure BS. The rest are just plain idiots. As long as we breathe we will always celebrate your life because you are still alive. You may not be tangible, but you are here just as emotions and faith and dreams are here. You are part of us, always. You are part of our reality, always. It is so overwhelming, because THAT much we love you... It hurts so much because THAT much we miss you... Imagine the biggest battleground, and so much strategy and moving so many pieces of your army to make victory happen... And then imagine that just when you reach the peak of that victory, just when you almost tasted it... it is gone. The real horror is the aftermath of the battle, when you have to gather the pieces of everyone and everything, and go on... when you have to face life under the "normal" that is just the most alien thought because there is no normal. There is no coming back to a blank slate. Everything changed. You mattered. You changed us. You showed us a better life. You restored us. You completed us. You made us better in every way.
Our candle in the wind, who showed us a whole new world.
And so this year we celebrate you with a Princess Jasmine birthday... Everything about you is a whole new world, with unbelievable sights... And endless love.
Happy 9th birthday, my dear warrior princess turned Valkyrie...
We remember.
Always.
Tuesday, June 28, 2016
Friday, December 25, 2015
CHRISTMAS 2015
Another Christmas upon us... It was beautiful when we woke up and Kali said Merry Christmas Mommy, followed by a Merry Christmas Daddy... and then an unexpected Merry Christmas Deedee while looking up to the ceiling. Angel Deedee is always around, with us. Knowing this, and that Kali acknowledges it, may be the only true comfort. Love never dies.
And love is exactly what keeps Deedee alive with us. We did all that we did because of love. Deedee was always surrounded by love. The world was cruel and harsh, but she knew kindness and she touched many lives both nearby and far away...
Life without our Deedee has been a different journey that doesn't quite feel right. We ache to hold her in our arms... to see her thrive and accomplish so many things... Why was she so fascinated by sharks? Would she have become the digital artist that she wanted to be? Would she have turned to science instead? Would she still love purple, three years later? Would she still wake up at 4 in the morning to have mommy sleeping at her side? What new dreams would she have aimed for? How many people would have fallen under her spell?
I miss my diva.
I have no words to describe how much I wish for her, everyday.
Life goes on, but nothing is the same...
This would have been Deedee's 8th Christmas with us. It is her 4th Christmas in Heaven.
Here I leave you some memories from our beloved diva.
REMEMBERING
CHRISTMAS 2007
1ST CHRISTMAS
At the hospital, fighting for her life
CHRISTMAS 2008
Newark, NJ
CHRISTMAS 2009
2009 PART 1
2009 PART 2
CHRISTMAS 2010
2010 PART 1
2010 PART 2
2010 PART 3
2011
Deedee's Night Before Christmas
2012
1st Christmas in Heaven
Mayaguez, PR
Merry Christmas, Deedee.
Keep watching over us... Until we meet again, my little one.
You hold our hearts.
PUERTO RICO 10.24.2015 to 10.26.2015
SUNDAY, OCTOBER 25
FLOWERS AND ANGELS
FOR DEEDEE
MONDAY, OCTOBER 26, 2015
FAREWELL TO DEEDEE
Wednesday, October 21, 2015
3RD Year From The Day You Earned Your Wings
It is the eve of the day in which you earned your wings.
Time keeps running out for all the things I set out to do, places keep changing, people keep materializing and vanishing, dreams keep coming back to inspire and haunt and to lure into belief and hope.
What are we to do now... The forks that divided the river takes us deeper and farther, the waters keep running so fast and with such strength...
Stillness.
Bring us just some stillness.
Bring us time to feast our eyes on your beautiful face and your beautiful eyes... Bring us time to take flight with you and enjoy the world as your eyes now do.
Stillness.
And courage to face each day with a sunrise that just signals a burning star that is so far away yet brings us much warmth...
Warm stillness... Warm cozy, gentle and swift wind that blows clouds of memories that we hold on to as if soft strands of your precious hair were just there waiting for glam and some sparkly pizzazz and colors of rainbows and dreams and unicorns and super-hero pets...
Stillness... Past, present and future in multiples paths playing multiples games and all ending up in just one... One you. One me. One us. One infinity that will always be connected and will always find courage and go on... Raising from the ashes... Raising from what some will see as imminent defeat.
One piece of infinity lived here on Earth is nothing compared to the infinity in which we'll hold each other's hands and in which we'll loose each other into each other's gaze...
We are but one soul. Different lives. Different bodies. Different stages. Different flights. Always one soul.
Always alive within me.
Alway alive in me. Around me. Forever. Peace and stillness...
Three years have been stolen from our human time together... Fly onwards into new worlds, with the freedom and joy you deserve beloved child.
But do come home... In the end,
Understood?
Forever.
Stillness...
...
I love you, my dear diva.
Monday, August 17, 2015
HAPPY 8th BIRTHDAY DEEDEE!
The Lion King: Remember Who You Are
This year Deedee's birthday theme is The Lion King. She loved this movie with passion, and because of it she understood very well what is the Circle of Life. She understood about life and death. And she understood the importance of being true to yourself, and that as life went on after death everyone that seems to go away lives on within us, within our hearts.
Visiting Deedee's Star
We celebrated going to Give Kids the World, checking out Deedee's star. Located in the Potted Galaxy, 563134. We will forever be grateful to the Gaynor Family, who put up a star for Deedee in their visit on 3-3-2013. In the notes she is mentioned as Sofia's sister, who passed away and did not make it to her wish trip.
It is impressive how the galaxies have grown... Our first time there the tower was new, and there were only 3 galaxies. It is all bitter-sweet... Beautiful, but bitter-sweet.
And where can you find Deedee's star? Here, of course...
"Deedee the Diva 4 Ever"
The guardian of the castle.
Inside the magical meadow.
Celebrating Back Home
When we got home, we had a surprise for Deedee. We light up her birthday candle, and sang her birthday song! Of course we had cake!
Kali was happy to assist in her sister's place...
And she blew the candle in Deedee's name.
Deedee's godfather was also here with us.
And here we are, our little family.
May there always be an angel watching over all of us.
May that angel always be you.
Our Diva, our Sunshine, our inspiration....
Happy 8th birthday, big girl!
May all your wishes come true.
May your days be filled with happiness and joy.
May you live in blessings and walk in beauty always.
I love you.
We love you.
Always remember...
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