Wednesday, December 21, 2016

Tough times...

It's another one of the times while on this journey that I don't dare think "it can't get worse", but rather wonder what exactly it will look like this time.  Whenever the incessant crying begins things always go down hill and rather quickly.  Maybe it is because I am grappling for something to hold onto that makes the fall feel that much quicker or maybe it is just that my patience and ability to cope at this point has evaporated even faster.  This. Is. Hard.  (Yes, I did just write one word sentences)  I never assumed that it would be easy, but I didn't really understand this version of hard.  Sadly, there is a mom reading this with a tear in her eyes thinking..."you have no idea".

This is such a painful journey.  It hurts on a physical and emotional level like nothing else and sadly there is no outcome that could change that.  I cherish the days that are good and result in Sonzee smiles and giggles, just as much as I loathe the ones spent on hours long crying sprees.  It is beyond horrific to have to see her be in such agony.  The worst part is there really is nothing we can do...we are doing everything we can, it is just that nothing is good enough, nothing works for any acceptable amount of time.  I dislike that everything with CDKL5 is trial and error, I want the "tried and true", the "sure thing".  Why doesn't that exist?

I would say "I don't know how much more of this we could all take", but I know that we will take it for as long as we have to and for as long as this is the best it can get.  I just really really hope that a happier alternative will emerge sooner rather than later.


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