Sunday, July 22, 2012

Grasping

One of the best things to come about from having two daughters with special needs is that I have developed a greater sense of appreciation for the "little things" that most people overlook.  I am still in complete amazement of babies who are learning new skills such as cooing, smiling, using their hands, reaching for objects, weight bearing on their legs, etc.  Because we were blessed to have gotten to experience all that with Cal 13-ish years ago, it is not completely foreign to me.  But since he was our first child, these developmental steps were EXPECTED & because of this, I'm pretty sure I took some of that for granted.  I could hardly wait for him to hurry up and sit, then crawl, then stand, then walk, then run, etc.  (now I just wish it would all slow the F down!!!  How is it possible my baby boy is going to be graduating from high school in like 5 years?!)

Don't get me wrong, I loved *EVERY* step of Cal's childhood.  But looking back, knowing what I know now, I wish I had savored each & every thing he learned so much more.  And while I am in complete and total awe of our girls and all they are capable of doing (given their situations), it is just DIFFERENT.  No question.  Their development is quite limited.  I got the "privilege" of reading their IEP's this year which reiterate to me on paper once again how INCREDIBLY far behind they truly are.  Their goals are sometimes laughable.  I often wish to add my own sarcastic, smart ass goals just for my own sanity benefit.  (My first occupational therapy goal will be for them to learn to properly extend their middle fingers at appropriate times to assholes who ask, "What happened to her?"  Grrrrr...)

Anyway... I know my girls rock.  I know their very lives are miracles.  I know they have FAR outlived their prognoses.  I know they have accomplished more in their lives without ever having spoken a word or taken a step than most "normal" people do in a longer lifetime.  But still... sometimes I have these moments where it hits me just how far behind they are, and I won't lie, it does hurt.  And I DO cry sometimes.  And I feel sorry/sad/frustrated for them, for Cal, for me/Scott, and even for our own parents (because they too don't get a "typical" relationship with their granddaughters).  Then I get pissed at myself for having these "weak" moments where I'm not all positive & smiley & beaming & shitting rainbows & all that jazz.

So... you can imagine how AWESOME each accomplishment truly is with our girlies.  And this particular one a biggie.  Both of my girls have extremely limited use of their hands.  They have had their thumbs tucked into their tight fists since they were babies, and that has not changed.  I remember hearing that was a sign of an underdeveloped brain, and there are no words to describe just how much that crushed me.  I prayed their fists would relax, their thumbs would come out, they would be able to grasp objects, possibly hold them for an extended period of time, and mostly just interact more with the world around them.

PART of that has happened!  Claire's fists have opened over the past few years (though Thumbkin remains solidly inside still, dammit), and she is now able to use her hands to touch switches and start to make choices.  It is just so precious seeing her able to tactile-y (is that a word?!) enjoy her surroundings with her sweet little hands.  This is my new favorite thing she does...
Gotta touch her Daddy's arm while she sleeps... xo 

She put her hands like this all on her own.


Helping Daddy play Tiny Wings before bed
(pretty sure her skill level at this MF game is higher than mine)

In just the past week or two, Lola has started to open her fists & hang on to things!  Observe my girl in action recently...
Leave it up to my girl to use her hand (lefty, no less... she's a southpaw!)  in a spiteful way to expose my tatas for all to see.
(And thanks for faking sleep afterwards, Mrs. Pocket.  You definitely caught me off-guard so that 3 minutes after this picture was taken when you projectile puked down my cleavage, I was unarmed with burp rags & your curdled vomit could then pool in my bra.  Your plan worked.  Well played.  Lola 1, Mom 0.) 

"It's MY CREDIT CARD, dammit!  Back off my shit & let me go buy some shoes, hair bows, & goat milk, bitches."

In true diva fashion, my (possibly possessed) dwarf was able to hang onto my credit card & not let go!  She held it for a good 2 minutes until Scott wrastled her down to pay our tab.  Brat! 

I could not be more proud.  I love you girls.


“Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for.”  ~Epicurus
xo

Thursday, July 05, 2012

The kindness of strangers

This note was left for us at dinner tonight by a couple who dined nearby that we never spoke to or even interacted with whatsoever. This note was slipped in with our bill, and our waiter informed us that our $100 meal had already been paid for by them. We are speechless. And grateful. And feel undeserving.

THANK YOU to K. & J. for your generosity. You will never know what it meant to us. We had an amazing night.

xo

Tuesday, July 03, 2012

Pubestache update!


Just when I thought it couldn't get much worse... my man busts out the sparse Fu Manchu. 

Babe, I love you SO MUCH, but ummm... Jason Mraz called.  He wants his hat (and possibly his entire look) back.  Damnnnn.

xo
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