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

12 comments:

Joyfullygrateful said...

Oh, I could change the names and do a bit of editing and these words could be mine about a situation Thank you for reminding me about observing, gratitude, honesty of feelings and so much more. Love to Lola and Claire. Somehow, I believe, their middle fingers will keep getting stronger too! You go girls!!!! Xxxooo

Bohemia said...

oh I totally get this Gwen. It's the little things that all add up to become beautiful big celebratory leaps. So proud for you and your amazing girls. xxxx

tricia booker said...

GIRLS RULE! And yours in particular, inspired as they are by their awesome mama. Good job, everybody. xo

Christa Erikson said...

Gwen- I just love reading your words- you need to write a book! You have a way with words. Awesome girl goin for the credit card already! Love it!

Anonymous said...

Somedays as mine run in opposite directions, sas me, hit and throw and climb and break and jump on things they shouldn't I start to loose my cool. I often look out my windows and think, 'quit being a selfish woman Gwen would love it if her girls were as Hell-lacious as these 2 brats you have'....thanks for being my reality check even when you have no idea! Btw Payton would be so excited to see the girls hold stuff, she always wants to hand them things to 'play' with. :) You are an amazing mother and those 'weak' moments happen to us all, even those without 2 special needs dwarfs! Keep up the hard work and your girls will keep surprising you I'm sure. Much love mommacita!

gina bish said...

This is so wonderful! It is the "little" things sometimes that keep us going and thriving and believing that our kiddos can do anything! Miracles happen everyday:). Keep up the GREAT work girlies:). XO

non-girlfriend said...

Your girls are beautiful! Thanks for this post - I love it :)

Aidan, Ty & Cole's Mommy said...

So very proud, too, of 'my' little girlies! They amaze me and I ADORE them!
I also like 'tactile-y'... it's a word in my book! hahaha!
xoxo

momsmom said...

I agree with the finger therapy! People are so rude. I've got 5 kids, and when they were all little people used to stop me while trying to shop and ask if I knew what caused "that." I finally just started telling them really hot sex, why don't you try it some time!? Sure did shut people up.

It is really awesome that the girls can use their hands this way. Touch is so important and sometimes the only way for communicating. Looking at these pics, their little hands sure say a lot.

Micro Parents said...

Oh Gwen that's awesome! Sweetbird also selectively uses her hand, most days to grab my shirt and pull it down... Usually in public! I have long ago given up trying to cover back up ... If that's what's gonna make her use her hands than I'm happy to flash anyone!!!

Banana Stickers said...

This is amazing. You are amazing. Your family is amazing. Don't for a second ever resent yourself for not being able to smile all of the time and shit rainbows. Only unicorns do that, and you don't look like a unicorn to me. You look like an amazing mom, hence why you cry sometimes. Fuck unicorns.

Lester Nesterenco said...

I love you folks. God bless you always.

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