Friday, July 8, 2016

Every storm...

8:51pm, 7:11am, 8:07pm, 5:44pm, 9:06pm, 11:06am, 1:13pm, 11:10am the times over the past five days that I remembered to use the seizure tracker to keep a record of the seizures little bear has had.  I wish I could say that after watching her seize over the past 16 months that it has somehow gotten easier.  That it doesn't make me want to cry watching during or now, afterwards, while she sleeps because the last one was 5 minutes long causing the app alarm to ring to tell us it was time to administer her rescue medication.  I wish there was actually some meaning behind my words when I say, "they don't even phase me anymore", because honestly they still break and take a piece of my heart every.  Single.  Time.

No remote location, no amount of beautiful scenery, no amount of positivity can take the sting away from watching your baby seize while you watch helplessly.  Random thoughts running through your mind.  When is this going to end?  Should I have ignored Sam and brought her suction machine anyway?  How long until we should give her the rescue medication?  Why is the CBD oil stored in the refrigerator and not next to me?  Is this one causing brain damage?  Why are her hands and feet turning red and clammy?  Why is it still happening?  Is she she going to stop?  

The fear, the anxiety, the extreme panic that occurs each and every time is probably enough to qualify me for a prescription of diastat (rescue drug) myself.  It takes me much longer than little bear to recover, to that I say Thank you G-d.  It has been over three hours and she is most likely out for the night; thankfully not awake reliving the experience, or in any more pain, (we gave her Motrin when she was whimpering and restless afterwards).  Me, well I sit here switching between Taylor Swift and Gary Allan, again exhausted beyond belief and blurred vision, sipping a glass of wine and holding back the tears that will eventually find their way onto my pillow.

It is the nights like tonight that I HATE the strength that I supposedly have.  The strength that leaves me feeling angry and sends me straight into the land of Why?  (For the record, I hate entering this land)  "Why Sonze?", "Why our family?", and the one I feel most guilty of, "Why me?"  Aren't other families that can handle this better, more gracefully, with more faith, who are actually strong and don't ask why?  Aren't there others who are better equipped to deal with this?  Oh, how I wish there was a way to take a little bit of the pain and all of these feelings and bottle them up into a glass bottle to be corked, buried, and NEVER opened.

My ability to keep on pushing through right now is in part to the lyrics in Gary Allan's "Every Storm"...

 Just put your feet up to the edge, put your face in the wind And when you fall back down, keep on rememberin' 
Every storm runs, runs out of rain Just like every dark night turns into day Every heartache will fade away Just like every storm runs, runs out of rain 
It's gonna run out of pain It's gonna run out of sting It's gonna leave you alone It's gonna set you free

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