Friday, September 12, 2014

Speechless

Behold one of the most brilliant things I have ever seen my sweet Claire accomplish...


Yes.  OH YES!  Our girl is working on kneeling!!!  I cannot believe my very eyes.  Claire continues to amaze all of us with her desire to challenge herself, to work through her increased tone/cerebral palsy, to use her body/disability to her advantage!  

I am speechless.  Yes, I know that is not a common occurrence, but today I remain just that -- SPEECHLESS.

I am so incredibly proud of you, baby girl.  You are my heart.

"That some achieve great success, is proof to all
that others can achieve it as well."
~Abraham Lincoln

Never EVER give up.  We waited 13 years for this!

xo

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

Related Posts Plugin for WordPress, Blogger...