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...



Rachel said...

Love you, Gwen. I hear you, and know exactly the range of emotions expressed in this post.

One thing though -- Dan's planking skills will make Miss Claire look like an overcooked spaghetti noodle, girl. Stop your bragging before we call you out and show you what world class hypertonia looks like.

Why does Special Olympics not have a plank for all you're worth category? Hmmmmmm.

Dictators Slave said...

As a fellow hyertonia mamma may I get an AMEN here.

MamaV said...

She looks so good! My daughter was in an orphanage for 13 years and if you ask her to bear weight on any part of any limb she will kill you with the daggers in her eyes ;-)

Unknown said...

You don't know me, and I don't have kids, special needs or not, so I'm not really qualified to respond... but it's the internet, so whatever. I would think most parents have at least 1 percent negativity sometimes. It's part of being human. My thumbs are pretty normal, but I suspect I'm not everything my mother wanted... I don't knowI, I'm not sure that functional thumbs are nearly as valuable as a mother who loves you for who you are. Maybe your kids are luckier than you realize. Hope you guys have a happy Thanksgiving!

Karla Lyle said...

Honestly I have those days. When my son is screaming from joy and kids stare. I get mad,heartbroken and I Want to get ghetto! But then I regroup and say you know what if he's happy and doesn't give a shut then I'm happy

Kacky said...

Shout out to the Hartleys and all us special-needs parents. I have a 31-year-old with severe autism. Big and mobile! Strongly opinionated too, and not afraid to get mean if he thinks he should. The honest truth is that if I didn't have him, I probably woukd have gone looking for someone like him. Because Maine has a generous shared-living program, I have been fortunate to meet many families who did do this by choice. It is a life rich in love and covered in schmutz, where you get to celebrate big victories on the regular.

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