Tuesday, April 17, 2018

Getting too comfortable

This past week I feel like I have been sucked into an uncertain realm of chaos.  The little control I thought I had over anything has vanished into thin air with such speed that I can feel its whiplash.  I have looked up at the sky about five times since last week convinced that my life is listed in the dramatic comedy section of G-d’s library.  My brain is overtired, I am physically and emotionally exhausted, fear of the unknown is debilitating, and I feel like my world is closing in on me.  Moments like these I wonder where things would be if we did not have the CDKL5 component.  How would I be different?  How would our life look? 

The way my brain functions these days I know has been significantly influenced by what I have been exposed to over the past 3 years.  I know I have reason to have the thoughts and fears I have, but that does not change the fact that I wish that were not the case.  I wonder if there was a study done on my brain in January of 2015, before the birth of Sonzee, and then now, how things might look different.  Surely the psychological effects of watching your child seize every day and face near death experiences must play a role with how your brain continues to function from that point forward. 

I know the events of last week sent me into this 100mph tailspin because they caught me completely off guard.  I bought a new hospital bag weeks ago after a parent in a local support group raved about a new backpack that comes with a charger and speakers among tons of storage pockets.  It was on sale at Walmart and I thought, “I have to have this even though we haven’t had a need for one, because the current bag I use has only two compartments”.  It came and sat in Sonzee’s room with the tags on every zipper. 

Last Monday Sonzee went to school, she had her typical day and had a seizure with her nurse.  All afternoon her nurse, Sam, and myself sat waiting in anticipation for her next seizure.  When it happened at 6:10pm, I said “oh, there we go Sonzee…we have been waiting for it”.  Never had one seizure resulted in the use of 911, or as much medication as we loaded her with, for it to stop.  We have used the same cocktail to help with a day when she has a ridiculous amount of seizures, but this was our first experience with a seizure not stopping on its own, and even after rescue meds.  I guess that is what I get for getting too comfortable.  I guess that is what I get for thinking, “why would I need to have the new bag packed?”


You would think that I would have learned in 3 years there is no such thing as “letting my guard down” or “getting comfortable”.  It is just not possible.  Things can easily change in a minute, seizures have quite a way of smacking me back into reality when I start to get content with what her "typical" is.  I now have her new hospital bag packed and ready to go in her bedroom.  I can bet the majority of the money we have that it will get used again.  It will be when I am least expecting and at the moment I have gathered enough strength to think “things are going so well, how could they possibly change?”

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