Monday, November 19, 2018

If only

It was "one of those days" yesterday.  Sonzee's seizures were nonstop, she cried when she wasn't having them, she slept after she had them, she was in visible pain when she was awake, and she was having a very difficult GI day.  All in all, by 5pm I was trying (unsuccessfully) not to cry by my desk and by 6:30pm I was officially over the day.  I managed to get myself under some sort of calm by adding makeup into my shopping cart and posting an epilepsy awareness post; at least the latter makes me feel like I am doing something to help.

It does not feel like it has been that long since I have been in this position.  The one where everything between the last melt down and the one on the horizon becomes too much for me to keep bottled up and eventually I turn into a New Years champagne bottle being opened.  I know this is all just part of the repetitive cycle that comes with the situation, but I hate when it gets to this point.  Within the next 24 hours I will no longer be able to hold in the tears; it is ok, it is time for them to come anyway.  By Thanksgiving I will have be able to smack a smile on my face and almost feel the same behind the scenes, and by next Sunday I will have pulled myself back together to face the next unknown period of time.

If only this was not the reality.  If only things could be easier for her and I did not have to watch her suffer so often.  If only there was a magic potion that could be created to completely fix the damage that has been created and will continue to be by her mutated CDKL5 gene.  If only I could close my eyes, go to sleep, and wake up to a Sonzee who was born with a complete CDKL5 gene.  If only prayers such as the ones I have relied on for the past 3 years 9 months and 8 days could actually come true.  If only. 

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