Friday, October 28, 2016


We are officially a little over a month into the fall season.  Earlier sunsets, leaves changing color and air temperatures are becoming cooler.  Pumpkin spiced lattes and various apple-flavored items have taken over every menu.  October has almost concluded, Halloween is around the corner, then Thanksgiving, and in a blink of an eye the holiday season will upon us.  You can feel the joy in the air, the eagerness, and anticipation of holiday shopping, but scrolling through our CDKL5 parent support page things are not the same.  Fall to me is the season where the fear of the unpredictable course of CDKL5 starts to say, "beware".

Last fall and winter were by far the worst seasons for many families in our CDKL5 community.  Fall is when the health of many of our children starts to change.  It is when illnesses run rampant and that "simple sniffle" and "common cold" become deadly for many of our children.  As the days pass, more parents of the children in our CDKL5 family are asking for prayers as their child is being transported to the hospital for increased seizure activity, lethargy, and health issues in general.  It is the season (for me) that I wait with baited breath to see which family will become part of the elite group that no one wants to join.  I am not naive to think it will not be us, but like the rest of our extended CDKL5 family, we pray this year we will be spared.

It is morbid, yes, but for families with medically complex and fragile children it is our reality.  I am not by any means consumed with these thoughts 24/7, but I cannot lie and pretend that I am not slightly panicking on the inside.  I cannot say that with Sonzee's complete 180 degree turn in the past week that I am not haunted with the thoughts that I am missing something.  A curse of CDKL5 is how our warrior children can present so well but be so broken on the inside.  I fear what I could be missing.  In 95% of life staying simple is a pathway to success, but when dealing with CDKL5 nothing is ever simple.

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