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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