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.
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