Wednesday, November 11, 2015

Getting A Grasp

Claire Elise  ~  11.4.2015 during Occupational Therapy  ~ #ballislife defines the word grasp as follows:


verb (used with object)

to seize and hold by or as if by clasping with the fingers or arms.
to seize upon; hold firmly.
to get hold of mentally; comprehend; understand:
I don't grasp your meaning. 

Lately I have been struggling with getting a grasp on the enormity and profoundness of my daughters' disabilities.  While seeing seizures, reflux, sleep issues, tone issues, brain issues, dislocations, etc. on a daily basis around here is common; for the most part, I rarely "see" these many issues as things that are "wrong" with my baby girls. To me, it's THEIR NORM.  It's become OUR NORM.  I sometimes amaze myself with all that I can physically and emotionally deal with on a daily basis without letting it rattle me too badly or reduce me to tears out of the blue.  I LOVE THIS LIFE.  And yes, I did feel the need to put that cheerful disclaimer in here right now because the last thing in the world I want anyone reading this to think is that I don't.  Scott, Cal, Claire & Lola (& my crazy, goofy, awesome, possibly homosexual dogs, Romeo & Cash) are my world, yo. They are my EVERYTHING, as cliche as that might sound.

But there are definitely days where that 1% negativity outweighs the 99% joy, and I feel sadness for what my girls (and selfishly myself) must endure. During Claire's occupational therapy session last week, this happened...

I finally saw it.

Her poor thumbs.

Don't get me wrong, I am obsessed with my girls' cute little hands.  I think they are dainty and precious and super expressive and literally PERFECT exactly as they are.  

But today, for some reason, I felt heartbroken.

I felt heartbroken that it was almost impossible for Claire to grasp this tiny basketball.  I felt heartbroken that her thumbs are tucked into her little fists/palms all the time.  I felt heartbroken that because her thumbs are always tucked in, they function more like fingers and don't oppose.  I felt heartbroken that her hand splints haven't helped.  I felt heartbroken because her thumb joints have actually relocated over the past 14+ years so that they are now in completely different positions, thus rendering my daughter's hands almost unusable. Most of all,  I felt heartbroken that the world might view her somehow as "less" because she has yet ONE MORE THING she cannot physically do.  

I felt heartbroken for about 4 minutes until I realized that this is MY issue.  Claire loves her life, and SHE IS HAPPY!  Claire doesn't care that she cannot hold things -- in fact, she doesn't even WANT to hold things. Holding things doesn't = more excitement for my girl.  Holding things doesn't = increased worth.  Being unable to hold things would be devastating for me, but Claire hasn't known anything different her entire life. Having hands that do not function properly doesn't impact JACK SHIT for my girl.  Her happiness and joy are 100% completely independent of how her body is able to function physically.

Now, I will say, Claire does seem to find enjoyment working on optimizing all that she IS able to do physically.  She has been working on standing, kneeling, crawling position, & tummy time (or, due to the hypertonia -- the 5 minute plank!  I guarantee you that my girl could out-plank *anyone* on the freakin' planet. She's a beast!  Thank you, spastic quad cerebral palsy. HA!).  We are so incredibly proud of her for all she CAN do -- which is a whole lot, given her diagnoses & physical limitations.  My girl's a bitty badass!

My new motto...


Tuesday, November 03, 2015

Hartley Hooligans Hero Halloween!

In typical Hartley fashion, we may or may not have gone a wee bit overboard on Halloween yet again this year.  We like to blame it on peer pressure, as our neighbors all do the same damn thing, but in reality, we all just love this holiday.  This year we opted for the ever-popular superhero theme, as it was one we hadn't rocked before. We often refer to our girls as our tiny superheroes anyway, so it seemed fitting.  Any child who has gone through something beyond difficult and come out the other side even stronger is a hero in my book anyway. So without further ado (I have ALWAYS wanted to say that!), I present to you our 2015 Halloween festivities!

The Hooligan 7!

Ace & Gary... I mean, Batman & Robin!

Holy smokes, Batman.  I cannot believe they dressed me in this shit.

Holy strawberries, Batman!  We're in a jam!
Did you see where they tied my mask on?  UNDER MY CHIN.
(Do our dogs have microcephaly, too?!?! HA!)

Cal Kent

An unlikely coupling of Wonder Claire & Pocket Hulk have teamed up to protect & serve!

Quite possibly my favorite picture of Claire EVER!!!

I spy Wonder Bok (Lola's tiny rubber chicken)...

Hulk & Feta SMASH!
(Those damn fists are bigger than Mrs. Pocket!)

Tracey & Mrs. Hulk

Wonder Feta to the rescue!!!
(A big thanks to Tracey for decking out our non-feathered friend in matching Hulk attire! LOL)

My mini-Hulk all tuckered out

OMG.  I love them sooooo much.

Nice wig, Madam.
I am embarrassed to admit that Scott dressed up as "Amazing Scott," complete with a shirt stating this, red floral Hawaiian board shorts, and a blonde, poofy ladies' wig.  W.  T.  FFFFFFF?!?!

A huge thanks to our awesome occupational & vision therapists, Stacey & Joli, for the awesome painted superhero pumpkins!  This was a three week project that involved hand painting the bottom color the first week, the top color the second week & then adding the gold/white accents the third week.
Scott used a black Sharpie to outline & create the final product.  SO AWESOME!!!

Post-Halloween mood

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