Thursday, February 16, 2012

Little Miss Demanding

The little princess I feared we were shaping has emerged.

After a stressful day of work I walked up to the door.
From outside I can see Raquel playing happily on the floor with a nurse and as I eagerly walk in the door to find out how her day was Raquel stops what she is doing, looks up to me with a furrowed brow extends her arm and with a clear and concise no bull word says.


Pointing back to where ever I'd been.

Yikes.  I've become the evil dad.
The one that holds her down and pops blisters in her mouth.
The one that holds her down and pops blisters on her chin (any danger zone for that matter)
The one that holds her wounds tight to drain whatever fluid maybe pooled under her bulging Epidermis.
Then pours water on the raw open skin, although before that I'd been holding her steady in the bath while a nurse cloths her down.  Staring her in the eye for her to calm.
Wait a minute?  Baths were Ren's job.  Share in the suffering...
What else is there.
Mostly abuse I guess.
Doesn't help that when we are together I'm teasing her in one way or another. 
Then unfortunately when she's really wild and thrashing and Renata no longer feels safe holding her it's dad again.


It's funny to hear her clearly say GO.
But not really.

Tough love.

The fear I had, in which she's constantly getting everything she wants, at that moment has made her like a little General.  The nursing help is so needed, but...  Are we creating a monster?

with a little Pees (please).
Are her basic words.  She gets a new one every time you work at it with her for a bit.  But if it's meaning is not overly useful within the hour, it's not retained for too long.

This morning after a little tiff and disagreement and her pulling what I see as The Little Miss Princess Syndrome I carried her back to her crib and left her there.

Completely going against all my principles of EB care. 
Freaking kid, instant intervention. 
It's becoming clearer though when it's for attention and not.
After a few moments of the whaling I walked back in her room during a pause.

We had a short discussion with her saying UP UP UP UP and me laying the ground work for cohabitation.
Once up in my arms and back into the living room she went off again.
Back to the crib and repeat process two more times.

I don't get it.
Who else dances and listens to Dub with her?
She gets it too.  She pulled out some new moves today that had me in stitches.

So far this evening she's cried for 3 min every 30 minutes since she went down.
No major wounds, two dime sized on her one foot and a bunch of nicks all around her face.
So she's in very good shape.
Don't know.
EB or not to EB

"Are you really telling me I shouldn't be in the fridge? Do you know who I am?"

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