Thursday, April 18, 2019


Death.  It is something that happens entirely too often in our already small CDKL5 community.  Every year I find myself and other moms I am closer with saying, "this is a bad year".  In reality, I am pretty sure every year since Sonzee has been diagnosed has been "a bad year".  Just one loss is honestly too many, and we have yet to finish a full 365 with only one loss.  When the losses come back to back, weeks or months apart it is especially more difficult.  Each death shakes our entire CDKL5 family to the core.  We break for the child's family first and then we break for ourselves.

Age doesn't matter.  My heart aches for the families of the babies, of the toddlers, of the school-aged, of the teens, and of the adults.  I walk around wondering when will it be our turn to join #lifeaftercdkl5.  I wonder if it really is even life after CDKL5.  Does family life with CDKL5 actually end?  I know the day to day dealings do, but you can't exactly end the life you gain with a diagnosis of CDKL5.  CDKL5 will forever be part of our life. 

Today, Sonzee's CDKL5 sister Sadie was laid to rest, for some reason her loss seems to have sent a tsunami of a ripple into our close-knit family.  Maybe it is the fact that it was "unexpected", yet at the same time, was it?  Our children suffer daily, whether it's publicly shared or not.  If you have a child with CDKL5 you know this.  It sadly really isn't ever a surprise that it happens, it is just the punch when you find out who it ends up being.  I keep thinking that there isn't anything left of my heart to break, but then another loss is shared and a new crack begins.

It has been 4 years and 2 days since we were welcomed into this family.  A family that continues to grow yet continues to shrink simultaneously.  A family that honors those we have lost with bows, colors, words, gifts, letters, fundraisers, and the hope for a cure in their honor. Prior to 4 years and 2 days ago we weren't aware that there was even a potential of losing Sonzee at an increased risk to that of her siblings, yet now we seem to be reminded of that reality every single day.

The Mighty Contributor

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