Friday, September 28, 2012

carry over

[this post was started yesterday -thursday- and finished today -friday-]
....
Yesterday began and ended awfully.  
Braden was wild and ornery and exhausting until the time he went to sleep.  I tucked him feeling guilty for every encounter we had together throughout the day.  He tested me until he closed his eyes for that very last hoorah.  

It took an hour of crying for Mabel to fall asleep.  Her room and mine are connected through the wall and as I sat and listened to her, my anxiety grew and grew.  
 Nora couldn't sleep, as always, so at 1 am she was still entering my room putting up a fight.  
Win or lose, I just wanted to rest.  I wanted the day to end and to never revisit it again.

And then this morning I woke up with little rest and feeling frustrated that even when the house is supposed to be still and silent, someone is still always awake.  It's never a peaceful, relaxing night.  Two minutes after I woke up and headed down the hallway, Braden emerged from the pallet on our bedroom floor and puked all over the bathroom.  He was crying and telling me that 'this was it.  he was dying!'  Mind you, when Nora was sick a few days ago she would throw up and clean her own bowl before I even knew she had done it.  
Girls and boys.  Women and men.  The differences are vast and infuriating.  
Today (friday) our girl woke up puking.  She was lethargic and limp, laying in my arms and barely opening her eyes.  She didn't even smile when I sang to her.  As I held her my panic grew and I began to sob in total fear.  I realized in that moment that as much as I think I'm prepared for this battle that is Batten Disease, I am so not.

Mabel being sick usually means dehydration which inevitably means more seizures.  Her body was twitching and shaking so violently this morning that I couldn't bare to loosen my grip on her little shoulders.  It's gut wrenching for me.

Daniel went out to get pedialyte and she has kept down 2 oz. as of now.  She is awake, smiling and sitting outside with me now.  Both of the older kids got over their bug in one short day so I'm hoping for some gentle mercy for my girl to do the same.  
This morning Braden told me that he felt sorry for me "that I have to spend so much time taking care of Mabel."  He also told me that daddy should go with me to the hospital and Aunt Jeni should take care of he and Nora.  He's a smart cookie, this boy.  I reassured him that Mabel was fine and that we weren't going to the hospital [yet] but that if we went, Aunt Jeni would definitely be the one staying with them.  
We're hoping no hospital visit will be necessary this time around.  It's a little early to start being admitted.  Usually we're a little deeper into fall before that has to happen.  

In this very moment my stomach is rolling too.  
Hoping to just feel better all around.
This weekend is Apple N' Pork.  
It's fall's initiation weekend in our small town.  
Imagine with me apple cider floats, home made gingerbread cookies, fair food, hundreds of vendors with crafts and uniqueness overload. 

It's also grandma's annual wiener roast weekend.  
Fire, food, hay rack ride.  
This is my season!  Hoping to feel well enough to enjoy it.
Photos from the Phone coming later in the day!

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