Thursday, September 29, 2011


Five and ten years ago, our family was forever changed.  We were blessed with two precious daughters, Claire & Lola, both of whom happen to have primary microcephaly.  In our daughters' cases, the condition is autosomal recessive, meaning the chance of recurrence is 25%, or 1 in 4.  We submitted DNA almost ten years ago to try to isolate the gene(s) responsible for our daughters' diagnoses.  Suffice it to say, we are STILL waiting for results (and recently sent more DNA to the UK for further testing focusing specifically on the microcephaly + dwarfism link).  To complicate things further, our girls have additional diagnoses such as dwarfism, epilepsy, spastic quadriplegia cerebral palsy, cortical visual impairment, reflux, and more.  I don't often mention or focus on these characteristics because to me, they are just tiny pieces of who our girls are, and they *certainly* do not define them.  They are SO.  MUCH.  MORE.

Tomorrow, September 30th, is National Microcephaly Day.  In honor of Claire & Lola, we ask that everyone please wear YELLOW in support of all families who have loved ones with microcephaly!  WE HOOLIGANS THANK YOU (!) for supporting our family, following our blog, and most of all, for LOVING OUR GIRLS.  It means the world to us.

Enjoy the following pics of our girlies, sportin' their yellow bows... they intend to milk the yellow for all it's worth in honor of all their "peeps" with microcephaly! 

(And please, PUH-LEEEEASE, try to ignore the dwarf sibling rivalry below... it turned into a real clusterf*** part-way through the photo shit shoot.  Claire-bug insisted on being a real jackknob to her sister today.  Cracked.  Me.  UP!  Maybe because Lola deserved it after keeping Scott & I up ALL DAMN NIGHT, or maybe just because I loved seeing Pocket pout as a result, or maybe because I've known all along Mimi was a badass, and these pics just prove it... I don't know, but regardless, ENJOY!  :)
Claire Elise  ~  Age 10

Lola Grace  ~  Age 5

"When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile."   ~Author Unknown


Friday, September 23, 2011

Our Triple Threat

Just droppin' in to give props to our boy for winning Student Council Vice President today!  CONGRATS, CAL!!!  Apparently there were some incredible candidates, stellar speeches & overall, it was a suuuuuuuper close race.  I am so proud of all who ran for STUCO this year!

Yours Truly recorded Cal's antics election speech a few nights ago in our backyard in order to thoroughly embarrass prepare him for the real deal at school the next day.  HAD to share (with his permission, of course!)...


(Be sure to hit PAUSE on my playlist at the bottom of this blog to turn the music off first... THANKS!)

As always, we are SO proud of you with all you do, Cal!

We love you very much.


Thursday, September 22, 2011


I know this doesn't seem like much to most, but you have NO IDEA how much it means to our family to hear Claire cry.  Why, you ask?  Because for her, this is a rare occurrence.  I can almost count on two hands (OK, maybe three...) the TOTAL number of times in her life -- 10+ years! -- that I've heard her cry.  It doesn't happen very often, and I'm not sure what triggers it.  Trust me, we've evaluated, over-evaluated, tried to deduce a jillion scenarios which would explain this elusive phenomenon, but we have arrived upon a total of *ZERO* explanations for what makes Claire cry.  All I know is this... it's COMMUNICATION, babyyyy!  And whether it's "positive" or "negative," we.  will.  TAKE IT.

I toooootally love how my Mimi can turn that shit off like a switch.  My girl's an actress, yo.   And you can bet your sweet ass I smothered her with smoochies after her big crying debut on film (which I've tried for YEARS to catch!).  It was short lived, thank goodness. And I got some Buggy-grins shortly thereafter, so it's all good. 

SO in love with my girl!


Thursday, September 15, 2011


Thank you to my friend Alison for sharing this amazing video with me.  Tears before 11:00 am...WORTH EVERY SECOND.

(Be sure to hit PAUSE on my playlist at the bottom of this page before playing the video... thanks!)


Wednesday, September 07, 2011


I have had MANY startling realizations this past month or so, and quite frankly, I am not sure WHY.  Lately I've just been emotional (do NOT say it's pre-menopause, or I'll totally sack-tap/bitchslap your ass!!!!!  HA!).  OK, FINE, I've been MORE emotional.  I'll admit, I AM an emotional person.  I pretty much wear my heart on my sleeve.  I'm way too of an open book.  But I just have felt BLINDSIDED by all these feelings I've been having recently.

I mean, SERIOUSLY.  I have been living "this life" for 10+ years now (twice over, yo), and I'm USED to all of this.  I'm that person who sees the seizure, makes a pirate joke about it (my girls squint one eye during seizures -- it's soooooo adorable!), and MOVES THE F ON without a second thought (unless they linger for hours... then I might take notice...but then I probably still am just going to let them go, because I know my fear/worry just make them worse, and that's not helpful for my dwarves -- nor me, and I know that their protocol is to have days that SUCK with regards to those & then be PERFECTLY FINE for days/weeks afterwards, and so just like with everything else in life, I RIDE THAT WAVE... try to not get too high or too low.  Love it ALL.  How's THAT for a run-on sentence/thought!  DAMMMMMN!).  I'm COOL with this life.  I *LOVE* and completely embrace it.

So, here goes.  I have felt blindsided by the following shit lately & I wish to all things holy I knew why:

1)  OK, so Lola is soooooooooooooo f'ing SMALL.  Like CRAZY tiny.  Like newborns aren't this small SMALL.  NOT REAL almost?!??!  And see, I KNOW all this already.  I've been around it for 5+ years!  But why NOW is it suddenly hitting me that it's such a different KIND of itty bitty?  Because I've known for the past several years that:

A) She doesn't really grow much at all.  PERIOD.

B) She has ALWAYS been teensy/in single digits/the same height (23" approx.!) for like EVER.

C) She is still in size 1 diapers (maybe SOME size 2's, depending on brand... but they overlap at the waist by a good inch!) and 3-6 month clothing and she wears TWO swim diapers to hydrotherapy because her legs are sooooo tiny (can't let Mr. Hankey escape!  Need a double barrier!  LOL) at age 5 years 4 months old... yes, ummmm, STILL. 

D) She eats like a horse (and loves every second of it!) but just is apparently incapable of utilizing those calories for actual GROWTH (and development, but that's a whole 'nother story...!).  Oh, and Scott & I totally calculated up that since she's now 5 & has maybe 5-6 bottles daily ON AVERAGE -- that equals close to 10,000 bottles in her lifetime & she's STILL only 9-10 lb.?!?!?  WTF?! 

So WHY am I JUST NOW starting to realize all this & see her size in actuality?!  I take TONS of pictures of her.  I see her in other people's arms all the time.  Nothing has changed... so why am I having these thoughts NOW?  Has my mind been protecting me for some reason?  Am I equating her tinyness with lack of viability?  If so, WHY? 


Even more scary is the fact that this year, Lola would have been starting KINDERGARTEN.  My 9-10 lb. "baby" = a kindergartner?!  The emotions of saying/typing that make tears well up in my eyes for sooooo many reasons.  I just cannot imagine her in that type of environment -- being "old enough" to go to school, being on her own, and most of all, being TYPICAL.  She is who she is & I love her AS she is, but something about the wistfulness of this possibility/age/experience... it makes me teary.  Hello lump, meet my throat. 

The one thing I DO KNOW is that with each passing day, I love this child so much more than I can even put into words... She makes me ME.  She makes my world feel RIGHT.  She's so much a part of who I am.  We are SO connected.  She can keep me up at night for hours STILL -- AGE 5!!!! -- & I love her even more.  It's intense, this love. 

2)  Claire's TEN.  As in ten YEARS old.  Like a freakin' DECADE!  I had her in 2001.  It's now 2011.  TEN YEARS!  How is that possible?  DOUBLE DIGITS?!?!?  And going along with point #1 above, she's reeeeeeeally small, though maybe not as small as Lola, she's microscopic for a 10 year old.  She's 19 lb. and maybe 33" tall?!?!?  Not to mention she would be in the 5th grade this year.  Ummm, WOW.  I am just gonna go out on a limb and say that I think it must be a GOOD THING that it doesn't feel like ten years to me.  Must mean we're living and loving A WHOLE LOT.  Or maybe we're just in a neurological time warp... yeah, I think BOTH are accurate.  :)

3)  I'm feeling ridiculously overprotective of Cal.  I am hesitant to go into too much detail right now, but suffice it to say ----> Eggs in 1 basket.

It pains me to even say that out loud or hint at it... makes me feel grim and negative, and that's just not me.  Maybe another time I'll get ballsy enough to elaborate... but dammit, I just can't right now.  The thought of him maybe leaving the house in 6 years has me more than a little flustered.  How is that possible???  He makes me smile EVERY.  SINGLE.  DAY.

I found this clown wig at a garage sale & dared Cal to wear it into the next store we went to -- the only catch was that he had to keep a straight face, and if anyone said, "Hey, nice wig!" he had to reply with, "What?"  I bet him $5 he wouldn't do it... guess who won???   This is his best attempt at a straight face whilst wearing THE MOST RIDIC wig evahhhh.  It lasted all of 0.73 seconds.  :)

4)  Ten years of sleep deprivation's a BITCH!!!!!!!  And this night owl gig I've had goin' since college has got to change BECAUSE of that fact.  Dwarves who wake 3-4 times nightly for hours at a time do not make my ideal "go-to-bed-at-1-or-2-am-and-get-up-at-9-or-10-am-thing" work too well.  It's kicking my ass.  And Scott's fine ass.  (and my thyroid/adrenal's asses, too!  Grrrrrrr!)

I'm sure I could come up with a 5, but that would just be to appease my Type A, and I'm SO letting that goooooooo.  :)


I leave you with NO explanation of WHY the above emotions are surfacing, no imminent solution, no silver lining (yet... except for the fact I don't give a rat's ass WHY I'm feeling this, I'm STILL just gonna love the HELL out of my kids as long as I have 'em!!!) and best of all, NEW PICS OF MY GIRLIES!  xoxo

From now on, Lola's known as "Dolla."  HA!  I keep singing, "$50 dolla bills, y'all..." adapted from the classic Montell Jordan number "This Is How We Do It."  Polly Ann's a HUGE fan of 90's booty jams... oh yeahhhhhhhh.  She's got some Silk, H-Town, Jodeci, & Intro queued up as we speak!  HA!  (wait, maybe that's me... LOL)

Hand-made dress & flowers by my friend, Jill Cox, of JillyBean Designs (look her up on Facebook, too ~ tons more incredible designs pictured there!)

More JillyBean Designs...  <3

"You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should." 
~Max Ehrmann (Desiderata: A Poem for a Way of Life)

Saturday, September 03, 2011

Dwarf Dojo

OK, so I recently found this ol' gem-of-a-folder on Scott's bulging hard drive (HA!), and it was just TOO CLASSIC to not share.  These pictures were taken on December 12, 2007 when Lola was just over a year & a half old.  As usual, we were doing childish things with her -- big surprise!  Apparently Scott found an old crocheted scarf that his grandma had made for a Christmas snowman decoration, and when I came into the room, he had Lola suited up & ready to fight.  I am pretty sure a little pee came out when I saw it.  I knew I HAD to capture that moment in time, and I am *SO* glad I did!!!  Judging from the footage and size discrepancy, I'm assuming these sparrers were clearly competing at the same skill level (just like Kramer in Seinfeld!).  Enjoy our chubby (see, she actually *DID* go through a baby fatty stage!), eczema-ridden, mini karate (that's pronounced "ka-rot-tay!") star in silent-film-style action!  Wish I had a flip-book of this bad boy.  HA! 

God, we are SO immature. 

And I LOVE IT!!!

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