Monday, March 19, 2012


New word.
Except it's not pronounced that way.
I had my brother over and we ate fudge brownies on the couch watching Better Off Ted while mildly attending to my little princesses.  (obviously Ren was out)
Raquel was doing her adult drone impersonation sitting between us while we giggled at bizarre scientists and quirky executives.  I think something was either dropped in the show or broken, I can't remember which but seconds later Raquel is standing at my brothers shoulder staring into his face saying Ooo-pee-see.  She must have said it five or six times over till she went on to playing with Cordelia.  Moments later Cordelia comes out proudly from the kitchen showing us the new word she taught Raquel.
Raquel repeats
Oo  - pee  - see

A small time later as I'm doing the straight jacket routine to get Raquel to stop wandering around and avoid the indiscriminate screaming and beating her self when she's supposed to be sleeping or getting ready for her crib and sleep, I asked Ren for a glass of water, please.
Raquel pipes up.
NOoo! MEeeee! Peees.
It was funny to see her so intent that she get the water and most of all that she hijack my thirst.

Nine.  (Also no, we've had a few Germans through here in recent time.  She's seen the video where Andrew and I attempted to get Jo to drop into a double black diamond run. 'Nien'.  By the way Jo,  Cordelia skied that run today.)
There are many words now.

It's nice to see all the projections people have given me about Raquel's personality and learning compared to other children without disability over time.  That she'll likely grasp on to certain things and learn at a different rate than some.
Cordelia didn't speak till she was nearly three.  It was mumble jumble.  I'm pretty sure it didn't help she was being spoken to in Czech, Slovak, English and my contribution of broken German and French.
With Raquel it's been fairly streamlined, a full dose of English speaking parents, grandparents and nurses as Ren doesn't seem to have the energy with Raquel to speak in Czech.  Yet Cordelia still does (?)

With her levels of future physical disability, communication will be key.

Sunday we invited over a fishing buddy and his kids for freshly ripped apart and boiled crab and clams.  Shortly before they left Raquel made a simple fall on the carpet.  It wasn't anything she doesn't do normally, but the knee landed first with sufficient forward momentum, as she sat there looking back with tears popping out from from her eyes I knew it was going to be a tragic mess.  Renata and I with our guests sat quite still at the table discussing the possibility of what just happened.  We let her have her moment then carry on with the kids.  Once they left we carried her screaming to the diaper area where we often tend to these type of injuries we deal with her quick fall's gruesome aftermath.
Just like that she'd lost the entire skin cap of her knee.
It wasn't debilitating like I'd suppose a wound like would do to me, but perspective rains down again on a family thinking they were edging on normal again.

I'd be remiss not to mention Cordelia and I skipped Mondays responsibilities and had a day in Whistler.  The weather couldn't have been better, or the snow.
We lived the highs and lows of the EB roller coaster and family trying to carry on.
One sad moment, then followed by a few proud ones.
Coco waist deep in powder making turns and Raquel with a giant blister on her knee charging around the house not complaining for a second coming up with new words with her ever attentive big sister.

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