Friday, April 25, 2014

EB kick in the %$&s

Ren and I have been thinking a lot lately of Hannah.
A girl who is linked at side bar that recently lost her life to EB and all it's complications and issues.
Losing a child at 11 it's eff'n scary.  Coco is 8!
I can't imagine or at least I'm trying not to. 

At the moment Raquel is doing very well.  She still of course has all her typical issues with eyes, blisters and everything, but she's super healthy, growing with a robust frame.  I often giggle with mixed feelings as I watch her -she kinda runs around like her dad - more of a rhino than the gazelle her sister is shaping up to be.  Cool to see a mini me, but then she's a girl - so sorry Raqu.

Raqu's school time has been great, but at home not enough is rubbing off.  She's ever more demanding and in some cases takes it out on nurses, then at increasing frequency attempts it with Ren and I.  When her attitude that the world was born to her servitude conflicts with her engagement with me, Raqu tends to very quickly be alone, in a room protesting in screams. 

I have always said, she's got the fight and personality strong enough to handle this disease, but dammit we still have to live with her day to day.

Couldn't she be just a little tamer at times?

Raqu in class- notice Grandma's sewing and fluffy chair Raqu specific?
All is good, because of everyone and everything that is going well.
No need to vent.