Tuesday, July 9, 2013


Crazy.  Some say time flies.
But somehow the last three years have felt more like a decade.  Gray hair that was coming in one by one has come in swaths.  I'm too young at mind to look distinguished!!!!! (Some say immature).

This morning with a happy smile, Raqu standing at the corner of her crib says after calling for help says, "It's my birftday".
Yes it is.
Raqu is THREE.
The brightness in her eyes is evident and two weeks of being sick with a cough and snotty nose, fluid and crusties at her eyes is almost at an end.
Ren finally home after three weeks walked into a germ infected household and her plunge into the cold, dizzy, snot fest has just begun.
Some how Coco just maintained only a small cough through out.  Must be what three years of breast feeding does as that kid rarely gets sick and when she does it lasts very briefly.

Anyway, Raqu is three and becoming a beautiful, bright, stubborn and intelligent little girl.
She's loved and is thriving despite what she's been offered by her parents screwed up mixing of faulty genes.

Simona sent these from a little party made for her yesterday after our plastics session at children's, where we showed off her hands and questioned again what to do with her webbed and mangled feet.  (nothing)....
As suggested the bandaging regime that we've followed with keeping her mitted with splinting of viscopaste has only shown in the three years a 3mm webbing at one space on her right hand between pinky and ring finger.  The rest is great, but for her feet which is a losing battle if I've seen one.

Here's the princess.

I've never been much for birthdays and will not go out of my way for a third.  Coco on the otherhand at a coming 8 won't let that happen, but Ren made sure to give Raqu a present early.  She pulled out a Mahogany trike I made Coco for around this age.
With hard angled pointy parts and the trike being closer to a run about bike in stability isn't what a kid slightly too small child with EB should be playing with, unsupervised.
Anyway the result after a little crash when Ren walked to the door away from Raqu.
It was difficult not to turn into raging bull when I saw the crash and heard the cries of Ren looking at the smudged skin.  Thinking to myself.  Good blister or bad blister.  Then realizing that wasn't the question I should have going on at an internal dialogue.  In fact the best course of action was none and that I should at every cost not talk about it with Ren if can be helped.
Is showing it off the the world a little passive aggressive?

1 comment:

  1. You have said in the past that no news is good news...but its been about a month now so am hoping for an update on your crew and woud particularly love pictures of you and your beautiful girls!