Tuesday, October 30, 2012

EB AWARENESS WEEK.

AND ALL I'M INTERESTED IN IS NOT BEING AWARE EB IS IN MY GENES.
But for all of you.  I'm reminded that it's important for Raquel that you are aware, understanding and compassionate when required.

The little princess has been a version of Schwarzenegger's Terminator of late.

With every chance she's attempting to off her sister or tell her father to go away.
Basically she's fine, but if a little piece of muffin makes it past the pie hole, she's puking tiny bits of blood within moments.  Which tells me perfect or fine isn't exactly the case.

But if avoided like many other things we can live in the moment and forget EB, except then there's the bi-daily dressing changes I'm wishing could be spread off that extra day or lifetime.
Or the fact her toes are growing together at an alarming rate.  Blister or not from blister?
I'm content though that her hands are immaculate.

On the weekend Ren and I had a few to imbue and stayed up very late at a Halloween bash.  The following day as we struggled with staying alert and awake I took Raqu off to the Quay.
She cracks me up with her level of independence when given the opportunity to roam.  She was at every gift store or place where she could touch turn or pull at anything shiny or noisy.  She even broke down in dance a few times with her animated goofiness hopping and doing a Travolta type sideways point, except hers was to the floor not to the sky. 

It's interesting with the comments.
'Did she fall?'
'Is that really bad eczema?'
'Oh the poor child had a boo boo'.

ahh Nope...  She's got a skin disease.
Very fragile skin.
So much so that any friction pushes it off.

Gasps.  poor thing....
Or the one guy who didn't look like he was too impressed she was in his store, but still wanted me to buy a hat.   The conundrum...
Yeah, and in Vancouver there are bald eagles flying off in the distance in every other shot.

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