Friday, November 9, 2012


It's like the EB spinning top.
Image from Debra International Awareness Campaign
We are living in a bit of a spinning dervish at all times.
Any wrong move and hands are cut up, esophagus is shred, elbow skinned, eyes mangled or feet freed from the comfort of flesh.  On and on it goes as any one issue kicks the spinning axis out of control and with every lash and flailing limb more and more of her system becomes at danger.
Somehow we have to find the equilibrium and pump the top to regain balance while everything around is being shredded and falling apart.

For months we were able to see a slight wobble and keep the momentum from working against us and maintain our sanity with a relatively healthy child. 

It seems the axis is starting to wobble out of control right now.  We get moments like last night were she finally stopped holding mouthfuls of gob and talked and ripped around our place acting herself.

Then within hours of falling asleep, all was lost.

Ren held her nearly the whole night as she cried in pain and discomfort.  Neither of us had much of an idea if it was a badly skinned elbow, the continuing throat issues, a new blister well below her bandages, the beginnings of a cold, all of it, none of it or something new? 

It was a wide awake night with a child bent out of shape with her eyes closed screaming that even the street light outside shining virtually a half block away at two am through our curtains, was "TOO BRIGHT!!!!!!!"

Actually, there was a positive, she wasn't writhing, just screaming.

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