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