In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Sunday, February 17, 2013
Just Pocahontas...
Dear Dee:
Not yet that time of the month in which we review what has been going on since you left... But had to tell you just how much we miss you and how we hoped for things to be different... Just yesterday we all talked so casually about a simple thing, going out to one of those famous places to have fun. And I turn to your father and say: “Well, we can do it. After all it is you and me, and Dee is the only one who pays, Kali goes in for free...”. That awkward moment when you realize that what you say, and really hope for, is just not possible... We feel you with us, Dee, wherever we go, at all times. We still see our lives as we planned it, with you. The fact that your body is not here makes it all very different in the eyes of the people... And we know that, big deal, you are with us anyway... you will always be with us watching and rolling your eyes when you see how stupid we can get... But still, in my heart... I see us getting four tickets, not three.
Today I woke up with no desire to do anything at all... It has been weeks of full throttle. It has been cleaning and fixing and working on that house... Then coming here and starting over the job hunt, and college, and the whole move... It all has been one thing after another and no time to sit down and feel... I am so tired and getting so worn out. No one knows all the things we had to do and still do, and all that still is ahead. There's just no time to stop and whine. There's just no time to let things settle or to dwell on things past and future to come. Today I felt like sending all to heck and just breathe. So we had the idea to go to a nearby mall. Something simple. Something common. Something sensible and fair, and low budget yet with an entertaining factor... Off we went. We got there. We tamed Kali's fits... We went to that favorite store of mine and ended up with a little something I ca use for my job hunt... And then we decide to venture into the Disney store. What a big mistake... I was greeted with the beautiful summer dress of Pocahontas, and automatically my eyes went to that necklace and earring set that I got you, Dee... for your birthday... and that I forgot to give you... You looked so pretty as Pocahontas for your birthday, and I just got involved on taking pictures and making you happy... and running after Kali whenever she took Miko off your arms (you got so angry at that)... That earring and necklace set got so ignored... and came up as I had to clean up your room... still on its package... I could not bear to be in that store. All that I have not cried all this time began there... That store brings up the best of memories of you... and the hard fact that you are not with us. And all around us people smile and are happy... Oh, Dee... My heart plunged.
Cruel beauty. It is all cruel beauty. I had to get out of there. I felt as if air had been taken from me. It hit me then... everything became about you... everything I did was for you... The little things, the big things... all were for you... to see those big hazel eyes of yours smize. Without you here and now, everything has become an unbearable void. It literally hurts being without you. Memories are not enough to stop the hurt. Kind words from people actually fuel rage because you were not suffering when you were with us... and no, things are not better now... and no you were never a burden... and yes you may be free now but you still had so much to do, and you were free in your own terms... No words can bring solace or any kind of consolation. You lived life to the fullest, you made all your dreams come true... you made our lives better and meaningful. You were the rare flower that bloomed in adversity and conquered all. You brought back music into my heart. You brought back belief in miracles and hope for humanity. You did so much! And the same way you were so important in our lives, my pillar of dreams. In you I saw all of my dreams coming true. And in one second, you were gone... One second, a second that became the greatest nightmare in our lives...
Nothing tops that. Nothing will be as terrible as loosing you the way we did... Nothing can make that big wrong right in any way. We feel it was so wrong... we feel you were to be wit us a bit longer... We were not ready, we did not fathom... And so, we still are numb to that reality. Numb until Disney slaps our faces with a pretty Pocahontas dress, and jewelry that goes with it. My dear Dee... my brave warrior... my courageous princess... my sassy diva... There is no book on how to live on without you. Going on... we may get there... but is a half-happy thought, filled with half-possibilities. Our smiles hide the deepest pain... We keep on sailing, we keep on hoping... we try to seek a new cause in your sister, and at least do something about it. But it all feels pushed by having no other choice. As usual things happened and we did not have a real say on them... our only solution has been taking those happenings and trying to go with them. We are trying to keep on making you smile, Dee. If you are here with us, you know that. We are trying to do our best to cope. It is just too soon... And we love you so... We will always love you so...
Mommy
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