It has been one week and a day and a half since we have been back home. It seems that every time this chapter repeats, the recovery is always different and becomes more difficult. I wish I knew why. Maybe because the reasons behind the initial admission are rarely ever the same. Maybe it is because the situation, and life surrounded with the complexities of CDKL5 in general effects every family member in a different way. Maybe it is just because we are all exhausted from everything that is constantly thrown our way. I can throw out my guesses from now until I am blue in the face, but odds are the reason will just be added to my never ending list of things I won't ever understand and lengthy list of "we won't ever know why".
These situations literally drain the life out of my body and take me weeks, really months, to truthfully be back to okay, or whatever okay has even become over the last 3 years and 7.5 months. It is usually just enough time for another floor to be pulled out from under us so we can start sliding down into the dark CDKL5 abyss. This past week after my rock bottom moment Sam reminded me that if I am feeling overwhelmed then odds are everyone in the house is feeling it too because this life is not normal. It is true, nothing about any of the situations we find ourselves in when it comes to Sonzee and her life is normal. None of them are fair and none of them do or ever will make any semblance of sense.
Yet here we are again playing the same game but with different specifics. The all too familiar chaos that unearths another consideration, another complication, another source of suffering for Sonzee, and another bout of muddy clarity for the rest of us. I wish I really knew what all of these hospitalizations and inconsistent crazy home life was doing for Sonzee's siblings. I wish I really knew and was able to truly understand what Sonzee's perspective and overall desires over everything were. Are we still making the correct decisions and are they the ones she really wants? Most importantly, will we ever truly know the truth to that last one and what would we do if she disagreed?
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