Thursday, May 17, 2012


The morning air feels like fall.  It gradually gets warmer by afternoon and then by evening we are back to brisk, cool air.  I have been able to leave the windows open as our big house holds cold well.  Not for long, though, as temps are supposed to sky rocket into the 90's this weekend.  What a wonderful summer initiation.

Last night when I rolled over in my sleep I found someone curled up next to me in my bed.  Not sure how he got there or why but I didn't mind.  I squeezed in closer and pulled him in tightly.  I could have carried him back to his room but instead I used careful intention when smelling him and holding him close. 
At some point, she joined us as well.  I rolled over and snuggled her body too.  They are only little now.  Just right now.  And I can't help but thank God that they still want to be in my big bed when their dreams are too scary and the night is too dark.

She also lost another tooth this week.  I can't believe she's growing up.  I am in denial.
And then there's this babe.
A seizing, vomiting week has been upon us and it isn't pretty.  I broke down in the living room yesterday crying over anything and everything.  Mostly it's the constant noise that she makes.  But then it's also the constant movement that her body does.  And then there is the two of them together-noise and movement that is completely overwhelming.  And then there is the sound of my bigger kids fighting and laughing and playing outside.  I am desperate for moments with them and yet I'm consumed every minute with her. 

She got weighed today during feeding therapy and has lost weight.  Constant seizure activity robs her of any calories that she could potentially be keeping. 
My catch22 mystery girl.

I'm so very discouraged.
For 2 whole weeks life seemed too good to be true.
And in many ways, it was.
So here I am-back to reality. 
Sad.  Honest.  Raw.  Painful.  Lonely.
Scared.  Frustrated.  Disappointed.  Discouraged.
Blessed.  In love.

Beautiful snuggles and carefree in one bedroom. 
Seizures and fear in another.

Trying to keep my perspective today.  Hoping for a better tomorrow...

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