Tuesday, April 3, 2018

13 Days

In 13 days we will celebrate the 3-year anniversary of Sonzee's CDKL5 diagnosis.  A day that no matter how much time has passed on a calendar, the details of that day will remain forever etched in my mind.  A day that I can confidently say "changed my life", and one that I feel I should say "for the better", but honestly, I do not believe that.  I can twist this scenario into being something positive.  I can say how my perspective has changed in many areas, or how I am a different,  and or there are people I met because of all of this, and how great these experiences have been, but today I am honoring the part of me that stays tucked away, afraid of being judged.

I loathe April 16.  It ranks up there among the days I wish could be erased from the 2015 calendar.  A day I wish would never have happened.  It is a day that no matter what, will continue to play out for the rest of my life.  It will forever remain a staple.  It is a day that cannot be erased, ignored, or forgotten because it was just a starting point.  It was the day we were first introduced to the string of characters, CDKL5, to a world that was essentially out there and just waiting for us to find.  That day we learned there was a community, an actual family for us that we never realized existed.  There were families that had already been affected by CDKL5 living their daily lives right alongside ours, and we never knew.  There were children who had already lost their lives due to one of the many complications that can arise being diagnosed with CDKL5, and I had spent 31 years oblivious.


Lately, I have found myself trying to envision what life would have been sans anything CDKL5.  It is hard to tell what exactly would be different.  Would I have had 6 pregnancies?  Would we still have had 5 children born?  Would we travel more?  Where else would I be dedicating my time and energy?  Was CDKL5 bestowed upon Sonzee to prevent something else from occurring to one of our other children, Sam, or myself?  I know the answers to these questions will one day be answered and so many more questions will eventually be asked.  After all, during this time 3 years ago somewhere in a science lab, a test was occurring that would give an explanation as to why my newborn baby was seizing, it just was not the one we wanted.



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