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


Wednesday, October 28, 2015


October 21, 2015  ~  Exactly 3 years PP (Post Pox)
I snapped this picture a few days ago during one of Lola's "high needs" days.  There have been more of those lately -- hence the three month lapse in blogging.  I don't mind the constant holding, cuddling, & relaxing; I just mind the fact that my ass is getting exponentially larger the longer I sit-sit-sit on it.  I rarely think back to our chicken pox days... mostly because it's too painful, but also because it brings back all the old fears & worries that consumed me during that time. There has honestly never been a time that I feared for Lola's life more than I did then.  I toyed with posting a picture showing how bad her chicken pox were, but it doesn't feel right.  For some reason, I feel the need to protect my girl by not sharing pictures of some of her darkest days. Another part of me doesn't want to admit still just how bad it really was.  It literally was 3-4 weeks of hell followed by 2 years of recovery.  We watched our precious, tiny baby scream and cry and stop sleeping and lose massive amounts of weight.  She dropped from 10 lb. to 7 lb. in a very short period of time. Our doctors were stunned, as were we.  We continued to feed her the same quantity & frequency that we always had, yet for some reason, it was as if her body simply could not process food at all. We felt powerless, terrified and defeated.  It was emotionally difficult even changing her diaper or clothes and seeing how deathly thin she had gotten. She literally had zero subcutaneous fat -- her body was nothing but muscle and bone covered by paper-thin, fragile skin.  I am overwhelmed with emotion right now just remembering back to what she went through -- what we ALL went through -- during that year or two.  We are changed.

It wasn't until I snapped the top picture that I realized just how scarred Lola still remains. Physically, emotionally, mentally.  I think we all are.  For years, I have glossed over how close we were to losing our girl.  I felt like if I didn't admit it, I could somehow forget what we went through.  It is just in the past year or so that I've been able to talk about it.  Though I can't do so very often. Honestly, there is not much to say except how grateful I am that our daughter chose to live.  I questioned daily if she was strong enough to overcome... I so wanted to believe she was.  Each time I finally got her to rest, it was quiet, and I was brave enough to be honest with myself, I would talk to Lola, to Scott, to a Higher Power, to the Universe, to my angels, to my friends -- I was searching so hard for someone to ease my mind, to tell me it was going to be okay, that Lola wanted to be here, that she had plenty of chances to leave & yet she never did.  No one could promise me anything.  All I could do was pray.  And beg.  And cry to the Heavens to please let my baby fucking STAY.

Lola's scars remind me of my pain, but mostly they remind me of her strength.  Each & every tiny scar that I count is my reminder of how far my girl has come and how much she truly wants to be here. Over the past year or so, the scars have softened and faded some.  Her personality has come back (and then some!), she is much less fussy (except when teething, as she has been doing recently), and I am happy to report she sleeps -- on average -- 3-5 hours a night now (up from 30 minutes - 2 hours).  Her skin is glowing, her eyes are bright, and her hair is thick and wavy. She is back up to 12-13 lb. now!  I cannot tell you how freeing it is to be able to let go of allllllllllll the fears and bullshit prognoses and possible scenarios that played through my mind like scripts and just LOVE THIS LIFE & LIVE IN JOY instead.  We can thank our sweet Polly Pocket for that gift.

Thank you for being our light amidst the darkness, sweet girl.
We love you so very much, scars & all.  Thank you for choosing to stay.


Monday, July 27, 2015

The Littlest Librarian

Yeah, so this happened, too.  And with that, officially all three of the Hartley gals wear specs now. We think it's just because we're more studious & smarter than the rest of our male family members, but we'll let them think they're gifted ophthalmologically (is that even a word?!) moreso than us.  WHATEVERRRRRRR. (You know the three of us girls are TOTALLY making that sassy W with our thumbs and pointer fingers right this very moment, correct?!?  HA!  OK, maybe the girls aren't since their thumbs are tucked in, but I totally am, and they are just flipping the birds because they are badass rebels. Tee hee!)

Lola's eyesight turned out to be not quite as jacked up  dismal  poor  horrific  blind-as-a-bat  bad as mine & Claire's vision, so she's got that goin' for her.  The doctor hopes that by correcting her slight nearsightedness now that maybe in the future, she will not need a cane regress visually like her poor mother. We shall see.  Let's never discuss this again, but for the record, I was fitted for bifocals when I was in the 5th grade, as it was an experimental process which was supposed to slow my eyesight from getting worse, and let's just say, it failed miserably. Not to mention, it completely hampered my swag factor, as I was sportin' grandma glasses for a good two years as a pre-tween.  Let's just say that adding a sticker to the bottom of my left lens & buying frames that attached at the bottom vs. the top because I "wanted to look unique & different" didn't help the cause ANY. But I digress...

I am super proud of Miss Thang's new glasses, as I think she looks like the World's Tiniest Librarian in them. And no, we didn't get these frames at Build-A-Bear OR the American Girl store (though don't think we haven't tried that shit on, because we soooo have). We actually were able to shop at a regular glasses boutique (gasp!) for our wee little nymph!  If that isn't progress, I don't know what the F is. 

I present to you the cutest little spectacle-wearing 9 year old I have ever seen... Miss Lola.  

I cannot eye roll big enough this very moment.

Oh wait, maybe I can.

Epic side-eye

I am SO.  DONE. with my Glamour Shots, Toots.

I am just gonna stare off into the distance for dramatic effect, and maybe if I'm lucky,
she will pick up on my severe disinterest in this photo shoot & other related shenanigans.

Or perhaps a strong elbow-to-the-chest will send a her the message that this photo sesh is OVER.  It's worth a try!

PS -- I am *NOT* a trouble maker!  Really!!!!!


Saturday, July 04, 2015

My Wee Hipster

So this happened...

Yep, yep.  It was bound to happen, being MY daughter.  Pretty sure I'm damn near legally blind without my contacts & glasses, so clearly I've been in complete AWE that my 3 kiddos - up to this point - have not required glasses. Cal & Scott both have vision "as good as a fighter pilot," according to our optometrist.  Damn them!!!  Last visit to the eye doctor, both were able to read some unbelievably microscopic line way the F down on that evil "E chart."  The only other person who'd done so was a fighter pilot.  So these two yayhoos have now demanded our eye doc add "glassblower" & "badass student-athlete" to that elite list, and they never let ME forget it!  Yours truly is currently giving the biggest eye roll EVER, as I can't even see the damn E without correction. They both can suck it.  Ditto that fancy pilot.  HA!

Claire's latest eye exam revealed that she was quite nearsighted.  I believe her prescription is -3.50 or something?!  Not quite as bad as mine, but she's well on her way. (So sorry, sweet girl o' mine!) Apparently the teen years are when eyesight can change, so our almost-14-year-old is actually on track for something.  WOOHOO!  We are using them with her when she's awake and looking further than 18-24" away and hoping this will make her world SO much bigger!

I snapped some pics of her sportin' her new Ray-Ban's like a boss, and I HAD to share.  Enjoy my studious little teenager rockin' her new specs!  

"The Bird" makes it's return... A certain someone, and I don't want to name names -- CLAIRE -- doesn't want her picture taken anymore.  Like EVER.  Typical teenage angst, we've decided.  And maybe a sprinkling of badass.

Seriously, you're STILL HERE?  Ummmm, no.

Throwin' shade with the best of 'em.

These glasses make me look glitter af.

"I'm on some new shit.  I'm chuckin' my deuces up to her." ~Chris Brown (& Claire!)

Don't make me come over there.

You HAVE to be kidding me.  We're done here, right??? You BETTER be feelin' my epic side eye, MOM.

Pissed?  CHECK.




YAY!  She's finally done!  I WON!  Attitude ALWAYS wins!
(At least that's MY theory! :)

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