Friday, March 11, 2016

It sucks

Here I am, again, finding myself writing the words "Sonzee has lost another CDKL5 sister".  Each of the girls that we have recently lost has affected me for different reasons.  It just goes to show how one person is capable of so much.  It is also a great representation that even though these girls share a similar genetic presentation, they are all unique and special individually.  Our most recent loss was of little 4 year old Dani, who while not "officially diagnosed" with CDKL5, presented with all of the same attributes as a child with CDKL5 and was awaiting a formal "acceptance letter" from results of her genetic testing.  

Her family had just moved to Phoenix and her mother and I had been in daily communication recently discussing providers and talking about the girls.  I was so excited about forming a friendship with another mother who has a daughter only a couple of years older than the bear that I could spend time with, who has been on a similar journey, who just plain "gets it".  I am still looking forward to what will become of our relationship, but I know at this point in time, her family has to work on developing their "new normal" without their precious Dani.

This just plain sucks.

Why on earth does anyone have to bury his or her child?  I will not ever understand it and I do not think I even want to.  I just know that despite the numbness I feel when I hear another child with CDKL5 has passed, there is an indescribable pain in my heart.  It is a pain that I am sure parents of a child with CDKL5 understand, but others might not.  I have said before how challenging it is to be in this position, trapped between the present and hopeful future.  It is challenging to keep hearing that these other precious children "are not Sonzee" and to rationalize the differences.  It is frustrating having to explain that even though I am hopeful for Sonzee's future, and even though, yes Sonzee is different, I am not naive enough to think we will be special enough to avoid this path.  I know some of you are thinking, "You don't know this is true", "Anything can happen to any of your children"...you are not incorrect in your thoughts, but whether you want to believe it or not...neither am I.  

This just plain sucks.

I do not hate CDKL5 because as another mother of a CDKL5 sister so accurately put it, it is part of our children.  It is what makes them who they are.  It is what makes Sonzee unique and special.  

However, it just plain sucks.    


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