Thursday, January 28, 2016

The last 20 days


We are only 28 days into 2016 and already there have been two beautiful little girls with CDKL5 returned to G-d.  Two little girls taken from their families.  Two little girls who at the age of 5 and 15 months were special enough to have completed their respective missions here on earth.  In the words of Sally Field's character in Steel Magnolias, "We should handle it the best way we know how and get on with it.  That's what my mind says; I just wish somebody would explain it to my heart."

I am heart broken, I am beyond devastated, I am feeling defeated.  I am pretty sure it is safe for me to speak on behalf of our entire CDKL5 family when I say, they are all feeling the same.  Those who have already lost their precious children have an understanding that goes beyond my current capabilities of comprehension; they actually are living our worst nightmares.  At the same time, those of us who have yet to walk that path are struggling to cope with the devastation this disorder brings to all of the children and families we virtually adopt as our own, while we all quietly wonder, "Which one of ours will be next".  

I have always known that no matter what, I will be burying Sonzee.  It is a morbid thought.  It is a thought no one wants to think, much less say the words aloud.  Yet, it IS a fact.  Your average typical healthy child does not qualify for "Make a Wish".  That is a service reserved for those children faced with life threatening illnesses.  Children with CDKL5 qualify.  I GET IT.  It was just not front and center in my every day dealings as much as it has been over the past 20 days.  The past 20 days have made things more "real", more tangible, more unavoidable.  While there is NO humanly way to ever truly PREPARE for the day it will happen, I have been giving this topic extra thought.  I want to make sure that when I am staring the worst day of my life in the face, I am at least at peace with the journey I made.  I want to at the very least feel without a doubt that I helped Sonzee complete her mission in the best manner possible, giving her all of the opportunities available, and with the least amount of motherly guilt as possible.  After all, I was entrusted with this insurmountable task when G-d felt I was worthy of being chosen to be her mother.  

These last 20 days have shifted my thinking and rearranged my priorities.  These last 20 days have given me a different perspective on what is most important in my life and the lives of my children.  These last 20 days have reinforced for me my desires to give the bear the best quality of life that is available to her.  These last 20 days have provided me with a rough draft, an outline so to speak of what I want to make sure I accomplish for the Sonze.

I want to give our little Sonzee bear more love than she will know what to do with, more love than she is able to tolerate in this life, so when she is no longer here with us, she still feels it wrapped around her.  I want to give her and her siblings special experiences that they will all cherish and help them to build memories that will last each of their lifetimes here on earth and play back for the Sonze when she no longer has them to create with.  I want her to know she has never been and will never be a burden to us, and we are so grateful for all she has and continues to teach us.  Most importantly, I want her to be as happy as is humanly possible and more.  I hope and pray G-d guides us in our decision making so she never has to suffer and that he ensures we continue to do what is best for her and not selfish for us.  Whether we are blessed with her physical presence for only a few more days, weeks, or months, or lucky enough for it to span to longer years, it is my personal mission to fully celebrate each and every precious moment that she has to offer. 

After all, the only way I will be able to follow through with my portion of G-d's plan is to realize he has given me this perspective as a guide. 

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