Tuesday, May 24, 2011

"R" word PSA televised tonight

This makes me SO PROUD.  Hoping to share a more personal experience with the "R" word later this week. 


Thursday, May 19, 2011

It's everywhere!

OK, so this cartoon ran in our local newspaper's "Funnies" recently.  As a parent of two microcephalic children, I'm *ALMOST* not finding it funny, but then again, it takes an AWFUL LOT to offend me, so I'm chalking this up to a suuuuuper distorted version of Microcephaly Awareness.  HA! 

Thoughts?  Discuss amongst yourselves...


Wednesday, May 18, 2011


A few weeks ago, we were able to get together with our friends, Angelina, Jesse & Anika.  Even though they live nearby, we are both so busy that we're unable to get together very often, but we always have SO much fun together!  Anika has microcephaly like Claire & Lola, and she will turn 2 years old in July.  I was honored and SO excited to meet their dear family about a year ago because it's not often I find other families who have children similar to our girls (let alone 20 minutes away!).  Anika ROCKS. MY.  WORLD.  Honestly... she is AMAAAAAAZING, THE most adorable little girl (no offense, C & L!  KIDDING!!!!!), and simply BRILLIANT.  I watch her in awe, delight in her accomplishments, and celebrate with Angelina & Jesse in all she is able to do...which is an awful lot!!! 

Anika can stand SO WELL!  She has really gotten the hang of it since I saw her last!

Grasping a toy!  And then...

...transferring that toy to the other hand!  This child is GIFTED!  OMG!

Gotta touch my girl!   Heart.  Warm.  xo

Holding Claire's hand... <3

My girl is HAPPY.

Anika is a freakin' rock star in her gait trainer!  She was all over our living & dining rooms, even figuring out how to turn around at one point!  I DO hope Jesse got those protective pads on the front of that bad boy though... Anika tends to use it like a battering ram.  LOL
Lovies for Mrs. Pocket!!!   (Sorry about the camera angle, Angelina...my bad!  Though the guys will probably thank me!!!  LOL)

Polly Ann feels like a giant here.  :)

Anika was all up in Pocket's personal space!

(ignore Polly Ann's random glowing left Terminator eye... it is freakin' me the hell OUT!)  And sorry for the Arnold reference.  He's now on my shit list.

Micro Posse

MELTDOWN HAS OCCURRED!!!!  Anika's "fits" were hysterical!  She'd just go limp, fall backwards & then cry... not as funny to Angelina & Jesse, but Scott & I were laughing our asses off!  It is just SO COOL that she can have a fit and show her true emotions and frustration!!!

SO.  FREAKIN'.  LOST.  in her eyes... OMFG.  Cal loves Anika!!!  He just kept telling me, "Mom, she is SO CUTE!!!!!!"

Lola was a perfect angel for Jesse... and I TOTALLY could've used  him yesterday morning around 6:37 am-ish as Pocket had not gone to sleep yet, dammit.  Hence the fragmented thoughts & disjointed writing  ~  sleep deprivation is a BITCH!  I blame Polly Ann.  She was in dwarf time out.  Like for the WHOLE DAY yesterday!!!!!  (kidding... sort of.  :)

I LOVE HER!   xo
The first time I met Anika a year ago, I remember telling Scott, "WOW... she can do SO MUCH.  I wish our girls were able to do what she can do..."  And for a split second, I'm almost ashamed to admit, I WAS JEALOUS.  And, for the love of God, what kind of parent is JEALOUS of another special needs child's abilities?!?!?  (PUH-LEEEEASE tell me that is normal!)  WHY HAVE I at times wished my girls had Down Syndrome or "just CP" instead?!?!  Because I am a real hot mess mostly.  But also because I'm a mom who wants to optimize my kids' lives in whatever way I can...even though being able to DO MORE doesn't necessarily equal more happiness, though in my warped mind in the beginning, IT DID (run-on sentence much!?  DANG!).  In my defense (HA!), I mostly felt that way when Claire was quite young, as I was just a rookie in this new life.  I cannot tell you the number of playgroups I attended during her first year where I was repeatedly asked, "HOW OLD IS SHE AGAIN??? Ohhhhh, she's ONE... OK..." followed by then getting ignored by said bitchy mother(s).  There are no words for how much that hurt me then when I needed the support the most.  Just tell me she's beautiful & perfect & you cannot wait to follow her (hopefully) long, amazing life & LET'S MOVE THE F ON!!!!!!!!!!  :)

In addition, every "loss" (having to repeatedly hear, "She won't walk, she won't talk, she probably won't live to be 1, she is blind," yadda yadda yadda...) was just one more crushing blow, and I SO wanted to cling to every last "normal" thing I could, mostly for ME, selfishly.  Though sometimes even now when I'm tired or hormonal (f'in' PMS!) or pissy or super stressed or deprived (LOL), those jealous feelings occasionally return... and usually I know that is when I need to look inward at myself, not at what the girls are somehow "lacking."  In those quiet, peaceful, meditative moments, I focus on how PERFECT Claire & Lola STILL ARE, limited or not.  I don't need them to walk to bring me joy... ditto talk, crawl, sit unassisted, smile, see, etc.

All that being said, YES, I DO occasionally wish sometimes that Claire & Lola were able to do some of those things.  It would certainly be mind-blowing to see them walk in a walker or use their hands deliberately or smile in response to things I do or say... and I think that makes me appreciate kids who CAN do those things that much more.  Hence, Anika having my heart COMPLETELY!  But also, I know that my girls don't have to DO ANYTHING or ACCOMPLISH SOMETHING BIG (developmentally) for them to impact the world around them with their sweet spirits.  I already love them with every fiber of my being  ~  that happened as soon as I found out I was pregnant with them, and it grew a million-fold once I realized their genes were even more unique than most.

Everyone has their "thing," we have decided.  With each diagnosis comes struggles, difficulties, things to watch for, concerns, fears, and disappointments.  With further cognition comes more painful understanding vs. my girls who won't ever be able to respond appropriately to someone making fun of them or hurting them, not to mention possibly not even being capable of comprehending that type of pain.  Walking and mobility (while f'ing UNBELIEVABLE to me) brings increased independence with associated risks (tumbling down stairs, running into traffic, parents basically being on "suicide watch" all day!) vs. my girls who basically stay put where I lay them (aside from Lola's bed base jumping escapades... Grrrrrrrr.....!).  I could go on and on about the advantages and disadvantages of each scenario, but suffice it to say, we are all given EXACTLY the child(ren) we were meant to experience in this life.  I personally do not believe it was an accident or a mistake that I was blessed with TWO profoundly affected daughters and one amazingly gifted son.  Perfection... all three of them. 

And to those well-meaning-but-clueless people who STILL continue to say to us frequently, "THANK GOD you have Cal..."  Ummm, you guys can SUCK IT.  Thank God we have Claire and Lola, too.  They COMPLETED our family in a way I cannot explain.   I have always loved the Garrison Keillor quote in my blog's side margin which states: 

“Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see is what you would have wanted had you known.” 

I could not agree more.


Monday, May 16, 2011

Blogger Issues

For some horseshit reason, many of the pictures on my blog aren't showing up on posts dating back as far as April 28, 2011.  I am in touch with Blogger about getting this resolved ASAP.  THANKS for your patience!!!!!!!

xo G.

Friday, May 13, 2011

As promised...

A few weeks ago, I mentioned a "first" for Lola... her first french braid EVER!  (Yes, at age 5.  :)  Hey, my girl's hair is FINE!!!  Like her mother's, dammit.)  It was damn near impossible to finagle, as I was working with mere strands of hair in each gather, but I somehow managed to pull THIS off...
My hand holding her braid, as a size reference.  And no, that's NOT the guy's hand below... HA!  (I love The Far Side!)
I remember my Dad showed this cartoon to my 6th grade basketball team years ago... we thought it was hilarious -- and I still do!!! 
OK, so I was all excited, because you know how when you have your hair french braided and then take it out, it's all wavy and pretty?!?!?  I was hoping for VOLUME!  Curls!  Lola's head to look BIG(ger)!  To not see her scalp!  Ummm...
Oh well, I tried.  :)  Lolita has my heart... I am *SO* in love with this child.  OMG.
Doing PT with our beloved therapist, Donna... who is totally FAMILY to us now.  xo
Rear view... hahahahahahaha!  Cracks me UP!
Art project done with our OT, Shelly ~ she always does the coolest things with our girls!
Why yes... YES IT IS.  Love you, Polly Ann.  xo
 Side note, ummm, how cute are Cal & Kaitlyn?!  OMG!

My girl, Claire has been ON FIIIII-YAHHHH lately during PT!  Donna and I both are in awe of how much she is changing.  Check it ouuuuut (said in my best Fergie voice!)...
Ignore the bed head & the fact she is partially asleep  ~  My girl is pushing up on her arms in her beanbag!!!!!!  (Oh, and those are her purple thumb splints on her arms/hands... but we affectionately call them her sparring gloves.  :) 

Let me sleep FOR THE LOVE OF GOD!!!!!!!! (said in Claire's best Tommy Boy voice!)  But OMG -- how awesome is she doing?!??!!?!?  WOOHOOOOO!
Once again, sleeping during therapy, but sitting up SO straight & beautiful!!!  YEAH BUGGY!
Flashing gang signs even amidst sleep... that's my girl.  :)  WSD (West Siiiiiiiiiiide Dwarves), yo.
I cannot believe how far Claire has come in her almost-10 years!  It truly is mind-blowing, and I am SO proud of her in all she does.  Last night I told her she was my favorite... and she sort of is.  :)  Course, tomorrow I will tell Cal the same thing... and Lola the next day!  They truly complete my life in a way I never expected before motherhood.

On a different note, my dear friend Jennifer lost her husband last week.  Bob, The Sofa King, will be DEEPLY MISSED.
  Cheers to you, Bob... the world was Sofa King blessed to have you in it.  xo

Saturday, May 07, 2011

Road trip!

The last week of April, we Hooligans had the opportunity to head up to South Dakota to spend some time with our dear friends, the Tellinghuisen Family.  We had SO much fun, I wanted to share our trip with all of you!  Beware, lots of pictures on this long post (!), as they are what truly capture who our precious kiddos are. 
No fair that Dode gets the front seat!!!  Can you totally tell we're in Kansas -- check the view.  Glorious!  LOL 
CODE DODE.  :)  Clearly my iPhone prefers me to hold still not get jacked around in the back of a bumpy truck for the ideal, clear shot.  LOL  We had SO much fun playing our own versions of "Don't Forget The Lyrics" and "Name That Tune" on the way up!  (And yes, you guessed it, Yours Truly was victorious once again... oh yeahhhhhhh!)
Easter gifts from Steph's Mom for the kids!  SO SWEET!!!  Polly Ann has placed both in firm, fisted headlocks for safe keeping.  :)  Do I see her gritting her teeth for emphasis?  Why yes.  Yes I do.  BRAT!!!
Cal was stoked about his sports magazine & chocolates!  Lolita got a proper stare-down after her stuffed animal beatdown earlier.  Justice was served.
More goodies!!!  (Notice Faw-Gop is in time-out in the background.  HA!)
Best apartment name EVER, right next to our hotel.  HA!
Jason, Cole & Stephanie  ~  shortly before Cole's baptism
The Hartley Hooligans + Cole, Boy of Honor!  (damn, he totally dwarfs Polly Pocket?!  HA!)
Cal meeting Cole for the first time.  I'm pretty sure he was terrified of Cal's humongo-like melon.  We ALL are.  :) 

Scott & Claire-bug, clearly not quite awake.  :)
During the baptism...
One of my favorite pics!

Gwen, Ty & Cal
On their best behavior at the reception after Cole's baptism... a rare sight.
Scott's playtime with Cole at his reception.  Love these boys!!!
Snuggling my Ty Ty  ~  sorry I grabbed your junk in the process, sweet boy.  Oops!   :)
Cal & Ty at Terrace Park
Scott & Claire posing by the huge-ass cannon
Claire's livin' on the edge... Scott having a Michael Jackson moment.  HAHAHAHAHAHA!
Jason & Aidan
Cal & Cole  ~  Super C's
Jason & Aidan and Claire & Scott
Gwen, Lola, Cal & Aidan
Quads in full effect, y'all...  beware, Lola was in RARE FORM for nearly ALL our photo taking escapades.  Fun, fun.
In cognito... that's how these celebrities roll.  (see what I mean about Lola?!??!)
Guaran-damn-tee you we paid for this one later.  LOL
The torch has been passed... lady-urtles RULE, yo!!!  Notice how jazzed Aidan & Claire are?!  Ummmm, yeah.

SIDENOTE:  The tiny set has found a new home with Kate & Anabelle  ~  the resemblance is uncanny!  Glad they can now haunt bring you guys joy!!!

Nothin' but love... Aidan + Claire
Crapped out & lovin' life!
Ty & Cal
Cal & Aidan
Now let the madness begin... Ty & Lola were OUT OF CONTROL!!!!!!!!!!  Observe...
Lola instigating... Ty, the opportunist, making his move on her!

GET HER!!!!!!!!!

Hand on his package, goin' for his girl.  Well played, Ty Ty.
Mixin' it up... Ty is so proud of himself for goin' rogue on Polly Ann.  She's gonna get him & gopple!!!
Best pic EVER.  HAHAHHAHAHA!  What a cluster!!!!!!
Since I've been seeing a chiropractor, I'm going to try this ONE little move I learned out on Lola... I grab her under her chin & TWIST...  HAHAHAHAHA!  She LOVES IT!!!!!  :)
The money shot?!?!?  HA!  Finally got their shit together, though it feels put on.  Can't we all just GET ALONG?!?!?
Yes, I know what you're thinking.  Awwww, Lola SMILES!!!  How sweet & innocent & cute!  Alas, this scenario is nothing but trouble.  Observe her ever-famous seizure smile, the precursor to the real shitstorm about to ensue.  Normally this "attack" is capped off with a good 8-ft. record-setting barf.  Good distance!  This was the story of Polly Ann's day.  Cute?  I think not.
C+C (Music Factory)... hahahahaha!  EVERYBODY DANCE NOW!
Brotherly Love!
My favorite 6-pack!
Thank you SO MUCH to Stephanie, Jason, Aidan, Ty, Cole & family for a most WONDERFUL weekend!  We LOVED getting to meet all your family & spend time with you and your precious boys.  We are SO INCREDIBLY BLESSED our quads led us to one another.  Love you guys so much!  You truly are FAMILY.   

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