Tuesday, August 19, 2014

I Will Catch You

Claire & me  ~  August 2014

A few days ago, I had a minor freak-out moment when I was trying to get a picture of Claire on the couch. Due to her high tone, her legs cross/scissor, and often times, her legs are straight out in an X formation. It's pretty rad looking, but the problem is that the tightness of her muscles have pulled so hard on her hips that they are now dislocated. The good news is that she is not in any pain from this. It probably happened so gradually that she didn't even notice. We monitor her hips/tone/body closely & work with our awesome PT twice weekly to help her with this issue. There are more drastic medical interventions which may or may not help this problem long-term such as surgery, medicines, etc. However, we can never reverse her cerebral palsy or stop her hypertonicity completely. Due to Claire's extreme sensitivities, we are not able to anesthetize her. Surgery is out of the question. Ditto harsh medicines & Botox -- our tiny girl just cannot handle it.

A few months ago we had a consult with a fabulous orthopedic specialist from Kansas City whom we adored. He too agreed that surgery for her hips or spine could be fatal. His exact words to me were that he was "terrified" to put her under for fear of losing her. Not to mention that some kids I have known who have had hip surgery had to have the surgery repeated due to the fact that the tone was never corrected. The muscles continued to pull on the hips, thus creating yet ANOTHER dislocation. I simply cannot take that risk with Claire..

(And I won't even go into details about how much it shatters me that Lola's hips are ALSO dislocated in the same damn way. Fuck these orthopedic issues. For real. Don't even get me started on the kyphosis/scoliosis shit either. Please know that I love every single dislocation, every "imperfect" curve of your bodies, sweet girls o' mine.)

So back to the story... I was trying to sit Claire up for a picture, and she had one leg bent and one leg straight. I tried to wedge her against the arm of the couch that would support her in this position, and she just arched out of it & buried her head, destroying the fabulously cute hairstyle I was intending to photograph in the first place.

So... I restyled her hair, repositioned her this time in the center of the couch, sort of wedging her adorable little teensy head between the two cushions. She got pissed as hell and tried to arch some more, but I kept her contained with bribes & singing some Lil Wayne for her. (Pretty sure the girls love him because they think he's "their people." Hint: keyword is "Lil." LOL!) I slowly scooched (skooched? skuched?! FRICK! Spellcheck highlighted all 3 words, dammit! Don't F with me!!!) her slightly to the center of the cushion thinking this might have a better result because then her head wouldn't be jammed between two cushions, thus giving her the illusion that she can arch back FURTHER. (Did I seriously just use "thus" a second time in this blog post? WTF! Does it make me sound like a badass?!) This diva is hard to outsmart, but I'll be damned if I was gonna back down!

As soon as I sat her in the middle of the couch in the center of the cushion, she actually relaxed & seemed happier there. I grabbed my iPhone like a ninja & flicked the camera button to start snapping, knowing full well that my photo shoot was gonna be a quickie. As soon as I honed in, focused & was ready to snap, I see Claire starting to literally fall to the side. I throw the phone down & grab her before she face plants on the couch. Claire's eyes widened but she stayed in that same position as she tipped over. I sat her back up, took aim again with my camera, and yet again, Claire's nose made a beeline for the seat of the couch.

I watched in disbelief as yet a second time, she didn't seem too bothered by this. I don't know if she reacted that way because she's a daredevil, because she trusts me, or because that was her initial intention - to FALL (AKA - get out of Mommy's Picture Time!). I once again caught her before she "fell" from a sitting position onto her side/face just inches below.

Now, you KNOW I love my girls as they are, where they are, and even if they stayed at this developmental level for the rest of time, I would be PERFECTLY OK with that.  Not sure why I feel like I need to make that disclaimer every time I spew out a fear/concern/worry of mine, but I do. But I think what got me the most about her falling twice was how no attempt was made to catch herself. I am positive she knew she was falling -- her eyes were wide both times & she seemed startled -- but the thought that she was unable to put 2 + 2 together, extend her right arm, stabilize herself on the couch, & stay upright made me sad. I have seen some amazing progress in Claire during PT the past year or so, and maybe that is why I still have hope that someday something as minor as her using her arm appropriately could possibly happen. I don't know...

What I DO know is that my girl is happy. There is no doubt in my mind. I really need to just follow her lead and not "go there" worrying about why her brain doesn't allow her to do _____ or _____. Until then, I will be her eyes/hands/intuition... as best as I possibly can.  I just hope it's enough & I can continue to be all she needs me to be.

My beautiful Claire, I will GLADLY catch you every time you fall, EVERY SINGLE DAY, for the rest of your life if you need me to. I love you THAT MUCH. You are my heart.

Photo shoot was relocated to the beanbag, which was positioned safely on the floor.  Claire "rewarded" me with some classic, typical teenage "PLEEEEEEEEASE PUT THE DAMN CAMERA AWAY, MOTHERRRRRR!!!!" type glares.  OMG, I love this child.  SO MUCH.

“I love you without knowing how, or when, or from where. I love you straightforwardly, without complexities or pride; so I love you because I know no other way.”- Pablo Neruda

xo

Friday, July 25, 2014

Thirteen

13. 

How is it at all possible that my sweet Claire turns 13 today?!?! 

Our first year with Claire feels like yesterday.  It was cram-packed full of fear, little hope & worry.  I have not forgotten the exact words that were spoken to us when Claire was 3 months old... "She likely will not live to be 1 year old."  I remember feeling as if everything in my life were crumbling -- that my whole world, my reason for being, my future -- were all shattered.  I had so wanted a daughter.  I picked out the name "Claire" when *I* was 13.  I had this image of what my little girl would be like, what we'd do together, how I'd fix her hair & paint her toenails like mine & dress like twinkies & we'd be SO CLOSE & she would be spunky & funny & cute & perfect.  

And we were given just that.  In a very different package than we were expecting, yet no less special.

I am SO. GRATEFUL.


"You can either be a victim of the world or an adventurer in search of treasure.  It all depends on how you view your life."
~Paulo Coelho, Eleven Minutes


July 2014  ~  Sportin' her new 'do!

July 2014  ~  PT in the pool with Angela!

I look back now & realize all that I would never wish to be... as a mother, a wife, a friend, a person.  I love who Claire has made me become.  I love how she has united our family and shown us what really matters.  I love that she touches people -- total strangers -- without ever having spoken a word.  I love that her eyes speak volumes and her expressions convey more than any words ever could.  I am in awe of her strength -- oh, her amazing strength! -- it makes me want to be more & support others more & LOVE MORE.  I love her determination and her spirit.  Guys, my girl is working on standing & supporting herself in a crawling position!!!!!  I wasn't sure this was even possible.  I love that my girl took that "1 year maximum prognosis" and basically told those doctors to fuck off.  Don't think for one second that my annual "Claire is STILL defying your stupid-ass odds" letter won't be sent to that dick doctor today.  I love how my girl loves.  I love that her whole life is based on love & giving as much of it as she possibly can EVERY. SINGLE. DAY. because honestly, that is all any of us should ever strive to do.


"Love is pulling together against all odds."
~Smiley Blanton


Fall 2001  ~  Those eyes... they have always seen straight to my soul.  Then & now.  
Spring 2002  ~  This picture always makes me tear up, remembering how Claire's legs used to not scissor.
I loved her then & I love her even more now because despite her challenges, she still finds joy in all she does.
November 2002  ~  Claire being a "triplet" with her newborn twin cousins, Elisabeth & Christina
October 2003  ~  One of Claire's first smiles captured on film, at 2 years, 3 months of age.
I cannot even put into words how precious this moment was to all of us.  To FINALLY see emotion.  To FINALLY know our baby is happy & FINALLY be able to show us.  To have waited 2 extra years to see such a miracle, not knowing if that day would ever come.  To say this was one of the best days of my life would be an understatement.
November 2004  ~  Photo by Gavin Peters
January 2005  ~  Cal & Claire with Gran
November 2006  ~  I love these hooligans!
August 2008  ~  "Geek Chic" taken to a WHOLE 'nother level before it was even cool!
November 2010

Happy 13th Birthday, my Mimi.  You are my heart.  For always.

July 2014

xo

Thursday, July 10, 2014

Thankful Thursday

Today I am thankful for therapists who become family.

To those who are willing to put in the extra time, who let themselves get invested in my girls' lives, who listen to me vent, who share their own lives & experiences, who bring their well-behaved children to my house & show me that some kids don't even have to be taught how to find joy in spending time with someone who is different, who truly LOVE THEIR JOB and MY GIRLS and ME... THANK YOU!  You will never know how much this means to all of us.

Max (age 3), Angela & Claire (age 12)

My girl rockin' her crawling position today!

My heart just exploded into a million pieces seeing them together.


Besties!
Claire seriously LOVES Max.  And he just "gets her."



O.  M.  G.
Love this soooo much.





My dear, you are SO loved.

"What is family? They were the people who claimed you. In good, in bad, in parts or in whole, they were the ones who showed up, who stayed in there, regardless. It wasn't just about blood relations or shared chromosomes, but something wider, bigger." ~Sarah Dessen (Lock and Key)

xo

Tuesday, July 01, 2014

Bubbles!

Enjoy the girls in action in their therapy tub yesterday!  I SO love the expressiveness they show, the interest they take in one another, & how purposefully they respond to what we say to them!  They amaze me every. single. day.


"I am so fresh in soul and spirit that life gushes and bubbles around me in a thousand springs." ~Robert Schumann

xo

Thursday, June 19, 2014

Thankful Thursday

Today I am thankful for Claire & Lola's good health.

June 2014

This week we had the girls' yearly exams & went over recent bloodwork we had done (Dr. Allman, you are THE BEST!!!).  Both girls -- while not "normal" (PS -- WTF is normal again?!?!?) -- are doing very well & are quite healthy!  There were a few issues with the bloodwork, but honestly, I would expect that due to their diagnoses.  There were no glaring problems, and the issues of concern from last year have resolved to some degree. We will continue to monitor them yearly & watch for any trends.

Claire finally hit the 25 lb. mark (at damn near age 13)!!!!!!  We fought for EVERY. SINGLE. OUNCE with her (and Lolita, too), so this is a huge milestone! Our Polly Pocket is holding steady at 10 lb. now, up from 7 lb. back in the Fall of 2013. (And no, I did not discuss her low weight back then. Something about focusing on the negative just felt SO WRONG when there were still so many things going RIGHT. Oh, and yes, Claire WAS much larger than Lola when she was 8. NO CLUE WHY. Lola eats SO well! However, her tone is higher than Claire's & she sleeps less. Maybe she is part fairy/pixie/Tinkerbell?!) All I know is that it is SO NICE to finally see Lola sportin' some "chubby" cheeks and upper thigh padding (she gets that from her mother, dammit). PROGRESS on all fronts!

We don't even bother taking head circumference measurements anymore.  Yeah, fuck that.  Tiny heads are beauuuuutiful!

A HUGE thanks & big love to Missy, the best damn blood drawer/taker/vampire?! this side of the Mississippi!!! We love you for working so patiently with us & our girls!

Sit back & enjoy these pictures of the shit show blood draw... Claire was full of eye rolls & Lola was arching & grunting like a mofo.  GOOD TIMES!

CLAIRE:
DON'T TOUCH ME.  I will fart on you.

End stages of one eye roll caught on film...
Also, flexin' & tryin' to embarrass the rest of us with her pythons while simultaneously acting uninterested.
Well played, Claire.

Wait, what???  You're gonna draw blood from my armpit?  HOLY SHITBALLS!!!!!

Notice how I've ceased all blood flow to the aforementioned tortured region?!
This shit is too easy.

Wiggle that bastard needle around ALL YOU WANT but I refuse to emit one drop of blood.  I got this on lock.

Folks, we have a minor snafu here.  Apparently they are going to location #2.
One more stick & I'm gonna lose my shit.  Literally.

What the fucking fuck!!!!  Please kindly remove your pointy weapon NOW.  Please & thanks.  K bye.

Oh wait... this isn't so bad!  I'm just gonna drift off here for a minute.  You know, plot some evil under the guise of sleep.

LOLA:
The ONLY place we've successfully been able to draw blood from Lola was from her armpit.
(Hence the reason we tried there with Claire first...)  

Goooooooooooooooooooooooooooooooooooooooooal!
 We've got blood!

Does this blood loss make me look pale?!?!?!?!
Daddy says I'm not even "fair."  He says I'm CLEAR.  He can suck it.

I am SO outta here.  AMF!!!!!!!!!!!!!


xo

Friday, June 13, 2014

Friday, May 30, 2014

The Poop Taco

Ok, so today I walk into the only carpeted room of our house upstairs to find what appeared to be a taco-shaped turd laying next to the changing table. It was different from a normal poo in that it had a defined D-shape. It was lacking convolutions, bumps and the normal length of our dogs' typical dumps, so this had me confused. I squint my eyes, flip on the light, and get close to view it better. It doesn't smell from 3 feet away, surprisingly. As I near 2 ft. away from the possible defecation, I begin to smell it. I get close enough to realize that it is brown and stinky like Mr. Hankey but not actually fecal matter.



I recognize it immediately upon closer inspection. Oh yes. It is clear to me now what I am seeing. I have been here before.  I know the culprit, and I am familiar with his fetishes. 


Cash (AKA Lover of the "Log Jam")

Yep. These vile "victims" make (roughly) the 38th & 39th known g-tube pads our dog, Cash, has thoughtlessly devoured. Most have not been recovered (Thank God), though several random shards have been found amidst actual droppings on Poop Scooping Day with much disgust from the Scoopee. 

Months will pass with no offenses, then other times, 3 are sacrificed in a span of 2 days (like this week). I am not dicking with you when I say that Cash has now officially eaten AT LEAST $156 worth of cloth g-tube pads in the first 22 months of his life. My homegirl, Kate with Tubie Toppers, isn't complaining, but this shit (pun intended) is getting fucking OLD up in here!!!!!

We don't know how Cash manages to find these because we have the basket of g-tube pads in an area he cannot reach. All of us and our babysitters/nurses know he is obsessed with these things & keep them up high at all times. When they come out of the dryer, we are on lockdown to prevent theft by whippet. But somehow he still prevails...

So fast forward to today, me 2 feet away from this gruesome, apparent shitstorm, and what option do I have but to pick the damn thing up?! I don't even flinch. I snatch it up with two fingers, carefully pry open the taco shape, and I spy #2... I mean 2 g-tube pads perfectly stacked on top of each other then folded exactly in half. They are both cold, wet, & completely saturated in dung juices/grass/hair/stool remnants.

I then did what any normal human being would do -- I sniffed it on the way to the trash. And then I proceeded to dry heave like a mofo. I threw them into the trash like a fucking boss and ran for the sink in case I hurled. I choked it down, washed my hands maniacally 4 times, and then reopened the trash can to photograph the crappy evidence for all of you.


You are welcome. 
Note:  Check out the disgusting dookie color, stuck-on grass, the random hair near
10 o'clock & surprisingly intact g-tube pads.
PS - Cash is a dick.

And yes, the brownish-blue/brownish-pink one was one I just bought like 10 days ago which today got filed under T for turd... I mean trash. The black pirate/skulls one was another fave, so suffice it to say Cash is currently topping my Shit List. Straight up. 


Faking innocence at the vet yesterday

I am not gonna lie, I contemplated trying to salvage the pads. They appeared untouched & unchewed (& who the fuck swallows two perfectly stacked g-tube pads whole?!?! Then somehow miraculously passes them still whole?!?!), so tossing them felt wrong on every level. Maybe I could try washing them multiple times or Cloroxing them overnight or boiling them in acetone?!?! In the end, none of these ideas seemed like good options, considering I planned to place these previously BM-encrusted pads ever-so-gently next to my precious daughter's open stoma to her stomach WHERE WE FEED HER. Ummm, yeah. Sadly, in the garbage is where the fake feces remained. 

On a side note, and I seriously cannot figure this out to save my ass... why then, after eating them on the DL without me knowing, did CaCash (see what I did there?!) decide to then pick up the poopoo taco in his mouth and bring it BACK IN the house to show me what he had done?  Was he possibly considering re-eating it? Licking it repeatedly like a poopsicle???  Playing with it like a damn toy?! Was it a "gift" for the girls?! Was it brought back in for spite or as a trophy of honor? Was he purposely taking me to Browntown?  Yes.  That must be it. Cash was flat-out sticking it to me. OMG, it is SO ON.


But all that being said, I love this goofball.  SO VERY  MUCH.  How could you not?!?!? He makes me laugh EVERY.  SINGLE.  DAY!
And I love how he loves our sweet Lola, whose chest his nose is pressed against above. Pure love. 

"Love is like taking a dump, Butters. Sometimes it works itself out. But sometimes, you need to give it a nice hard slimy push."  ~Cartman

xo
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