Tuesday, May 19, 2020


Every 30 days or so the groups I have set to "mute" start to show up in my newsfeed.  Facebook has learned me pretty well and for the last 5 years has made any CDKL5 page I follow the front and center item when I log in.  I have gotten really good at just scrolling by the posts or simply just clicking a "like", "love", or "care" just to show my support.  Over the last week or so I have actually found some energy to post a comment here and there, nothing too deep, but something the poster can hopefully find helpful.  It was in responding to one of those posts that I caught myself beginning to write about me not missing that specific part of CDKL5, but I erased the words and wrote something different.  It is one thing to think that, but to say that aloud seems almost wrong.

One of my closest friends is a mom who has a child diagnosed with CDKL5, and with her, I can be a little more blunt, just a little more me.  I found myself caught in a similar moment again in our conversation where I realized not only did I not miss those moments, but I had actually forgotten about the part of life with Sonzee.  All the bad of the disorder, all of the sleepless nights, the seizures, the gi pain, the pain in general, all of that thankfully is hidden in the recesses of my mind until I am reminded of it all.  The day to day thoughts of her are broader, fluctuating between missing her essence and her physical place in our family and the fact that her life was a struggle and challenge for her.  I do thank G-d for this provision, it definitely has a place.

Yet, this weekend spent in Flagstaff brought forth so many emotions and thoughts.  I found myself sitting outside looking around listening to my girls play together while Sonzee's baby brother was entertaining himself with a bubble lawnmower and bubble leaf blower when an image of a dressed up Sonzee playing around with them popped into my mind.  I was thinking about them all being together, and then snap! the image vanished as I realized I was daydreaming about a child we never even had.  That was never our Sonzee.  I was mourning the Sonzee we never even had paired with the Sonzee we learned to accept and then lost.  It is such a heaviness to bear the weight of multiple grievances.  There is such a huge pang of guilt in not missing certain aspects of her life, in missing a dream of a child she just never was, and in simply not even fully understanding who it is I am actually grieving. 

The Mighty Contributor

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