Claire & Lola do Michigan!

For your viewing pleasure, I have uploaded not one, not two, but THREE videos from our stay in Michigan a week ago!  Enjoy the shitty videography  cursing  dumb Kansas accent  dorky commentary  show!

xo

NAILED IT!

This past weekend, Lola accomplished a *very* big feat.  I wasn't entirely sure she'd EVER be able to swing something like this, due to her tendency to gag/choke on even a slightly more free-flowing bottle nipple or chunks of soft food that isn't squished up tiny enough.

However, our sweet girl managed to DRINK FROM A WATER FOUNTAIN while we were up in Michigan!  She didn't just do this once... she friggin' nailed it TWICE!  

Drink #1:

This pic was awkwardly captured by Yours Truly while I contorted my body to push the "ON" button with my hip, held Lola with my right arm at just the perfect angle, aimed her little mouth toward the water stream, snapped pics with my iPhone with my left hand, and ignored the throngs of people standing around watching this spectacle unfold.

I wonder if anyone understood how HUGE this was for my girl?

Drink #2, in action:

Seeing this makes me wonder how else I might be selling my girls short (pun intended!). Are there other experiences I am shafting them of because I assume they "cannot handle it?"  I am going to make a conscious effort to give them more chances to succeed at even menial things such as this.

SO.  PROUD.

Seriously, I am BEAMING right now!

"Treat all men alike.  Give them the same law.

Give them an even chance to live and grow."

~ Chief Joseph

xo

Extremes

It has been awhile since I have traveled to an art show with Scott.  I think maybe subconsciously I don't go as often with him because emotionally, it is quite draining on damn near every level.  And by "emotionally draining," I am not referring to the DAYS it takes me to pack all the girls' gear, supplements, clothes for every season under the sun, medical supplies & back-ups, our new double wheelchair, baby food, 3 batches of formula, etc.  I am not referring to the 10+ hour drives in our truck pulling a huge-ass trailer in any & every weather condition possible either.  I am not EVEN referring to the boredom, the extreme monotony (I'm lookin' at you, western Kansas on I-70), the run-out-of-things-to-talk-about awkwardness with the love of your life, the squish-yourself-into-the-backseat-of-the-truck-so-you-can-care-for-both-girls-simultaneously conundrum, or even the I-can't-play-one-more-f'ing-game-of-"Name That Tune"-or-"Who Would You Do" (come on, you KNOW you guys play that shit, too!) dilemma that so often occurs on these said, multi-day driving extravaganzas.  Nosireeeeeebob.

These trips are emotionally draining for one very special, perfect reason.

Now, this could be misinterpreted to be something negative or possibly "not worth my time," however, that is not the case.  I think sometimes I forget just how important it may be for me to do all of the above shitastic stuff in order to go with Scott to these art shows because it is when I go that I am reminded once again how IMPORTANT, how stirring, how very life-changing my girls truly are.

Here's why...

For starters, I don't know how to say this, but... Claire & Lola are KIND OF a big deal.  Ha!  They are not especially good at "blending in," I guess you could say.  We frequently encounter stares, whether the girls are ridin' dirty in their new double wheelchair (SO.  FRIGGIN.  INCREDIBLE!), carried in our arms, or even tucked away in a sling.  Picture "The Wave" at a basketball game in a huge, circular arena.  Arms are thrown in the air in sequence, and this ripple effect is seen and enjoyed by all.  A similar "wave" can be seen when we walk into a busy restaurant or walk down the aisle of a large art fair in a major metro city.  Heads immediately snap toward the girls, mouths drop open, elbows nudge the person next to them, and people frantically clear the way/continue staring/smile/sputter out frantically, "THEY'RE SOOOO TINY!!! HOW OLD ARE THEY? ARE YOU SERIOUS?!?!?"/panic or even in certain rare cases, we are completely stopped, talked to, praised, hugged, cried with, questioned and/or told we are God's angels/saints (this past weekend -- I literally laughed out loud, as I know I am soooo fucking FAR from that!).

Herein lies the deep emotions.  These private, personal moments with strangers (which seem to be happening more & more) are the ones that shake us to our core and catch us off-guard. (Even though I expect the stares, it's the touching minutes spent with total strangers who love our girls that get me the most.)  I don't care how much I love my dwarves, I am always about 2.4 seconds away from crying at any given moment when I talk about them.  I don't know WHY.  I have long since accepted their diagnoses/prognoses.  I love them HOW THEY ARE.  I don't wish to change them.  But something about people talking to me about my daughters in a loving way, discussing personal struggles or difficulties, telling me how strong they are, asking me what they mean to me, and wanting information even about how hard it sometimes can be -- it reduces me to a sobbing hot mess in a flash.  And it is these extremes themselves... the apparent negative stares/glares/whispers/elbowing juxtaposed (NAILED IT! Always wanted to use that word!) with the positive outpouring of love, hugs, kisses on the cheeks (this happened twice this past weekend), and abundant compliments that leave me shaken.

I think I struggle most with how much to share... how personal to get... how open I should be.  I am used to laying it all on the line here, as it is healing for me to blog about our journey in order to make sense of what I feel.  I tend to be an open book in person as well.  Those who know me can attest to that.  (Sorry, you guys!  Signed, TMI)  I just feel like I was blessed with my daughters (and our son) for a reason -- and perhaps one of those reasons is that I can help change peoples' opinions about children with special needs or maybe help them not fear the unknown with kiddos like ours.  Maybe they just need to see that the girls are "in there," loved, & precious to our family.  Or maybe they just need to know that life goes on.  Because it SO does.  And it is sooo much better than I ever dreamt it would be nearly 12 years ago when Claire was born.

One of my dearest friends, Lisa (Mom of Sam), who we met up with in Chicago.   

All I know is that no matter how emotional these trips become, no matter how much I cry, no matter how much my girls are shunned or cherished, no matter if people accept them or not -- going, sharing their lives with others, opening ourselves to those around us, experiencing these extremes... IT IS WORTH IT.

xo

Only Love

Once again, I have been absent.  I hate disappearing for long stretches of time, not updating on the girls, not sorting through my own shit by writing (as it always helps me SO. fucking. much.), not giving more thought to processing all that is on my plate (platter?!), not delving deeper into this crazy mind o' mine.  I just have not been able to go there, and I'm not sure why.  Maybe it is just too painful, too difficult, too personal... I don't know.  But for my absence, I apologize.

I was gonna come here a month ago and work though my own decision making process regarding Lola's health.  I was gonna tell you about turning points, the desperation I feel, how ALL CONSUMED I am at this point trying to make these important, enormous decisions regarding her care/life/health that I feel VERY underqualified to be making by myself.  I was gonna talk about how I've literally had to "let go, let God" even though I am not a super religious person (though I do consider myself to be very spiritual, if there is such a difference).  I was gonna tell you how out of control I feel most days, how these feelings are even carrying over into my dreams, should I be lucky enough to get to sleep.  How this need to "save every life, salvage the situation, optimize the hell outta EVERYTHING" mantra is literally ruling my life 24/7.  

I was gonna tell you all about Lola's gargantuous big girl teeth coming in behind her teeny tiny lower baby teeth & how they've not fallen out yet & she is seizing more & miserable & crying & sleeping even less, if that was remotely possible. (And sadly, I can tell you -- IT IS POSSIBLE.  Try 30 minutes of sleep a night, broken into 2-3 minute spurts. With your hubby/pass-off person out of town for 4 days/nights, 5 weekends in a row.)

I was gonna tell you about the fact Claire has a 12 year molar (Isn't that right?  Too exhausted to Google...) coming in on her top right gums that is making her drool & seize & not sleep her usual 18 hours a day, but how she continues to be her sweet, spunky self and shower her tired Mom with her darling smiles & precious glances.  And how due to her teething (or not!), she can seriously out-fart ANY grown man, ANY day of the f'ing week.  Already.

I was gonna tell you about our incredible project involving Make-A-Wish, the new therapy tub, and more (details to come!)... how unbelievably grateful & appreciative & slightly guilty this makes us feel... how we almost feel "not worthy"... how no amount of "THANK YOU's" seem like enough, how life-changing this is/will be for our girls' lives, how phenomenal of an organization this truly is & how someday we hope to give back to other families as they have given to us.  Somehow, some way.

I was gonna tell you about the end of an era, Cal graduating from 8th grade, now officially a high schooler, how he will be freshman Class President & made the Drumline & how hard he has been busting his ass at the sport he loves.  I was gonna tell you how incredibly proud I am of him for not only putting in time on the basketball court but also for earning straight A's his entire schooling experience to date.  I was gonna tell you how hard it is to think about him leaving home in 4 years, how our house will feel so empty with him gone, how awesome-yet-alone-feeling it is to see him become so independent, how completely terrifying it is to think of him driving, how my eggs feel like they're pretty much all in his basket as far as pretty much EVERYTHING in concerned (far too emotional to discuss this any further at this point)...  I was gonna elaborate on my feelings, my sadness, my emotions, my worries, my deepest fears... but I can't.

I was gonna tell you about Scott & how proud I am of him for sacrificing so much for our family, working tirelessly at his trade, traveling all over the U.S. to sell his art/earn a living/do something he loves, & for being my perfect equal/my better half/my soulmate/my best friend on the planet for so incredibly long that I cannot even remember life before him.  I was also gonna tell you how tomorrow is our 16th anniversary & how it still feels like just yesterday that we said "I do" & that I became his wife.  And how I cannot WAIT to spend another 16 years+ making each other happier than we could ever know.  

I was gonna tell you about my old dog, Pre, who will be 16 in a month who was never supposed to live past probably age 10 because he was thought to have multiple cancers but he survived & thrived & is so strong & beautiful & sweet & did I mention STRONG?!?!?  I was gonna tell you how I'm seeing him fail here & there and how heartbreaking it is to witness such a perfect life transition wayyyy before I'm ready for that to occur... I was gonna go into details about how a tiny part of me died when his sister, Halley, died a few years ago, and I'm not sure at this stage of the game that I'm strong enough to lose him, too.  I was gonna tell you how fragile & delicate life seems lately, and how the thought of another lost life makes me want to scream and cry and curl up in the fetal position and stay there until I cannot cry one more fucking tear.

Halley & Pre

I was gonna tell you about our puppy, Cash, his ruptured ACL at age 5 months, his ability to ingest shit that is CERTAINLY not digestible and his apparent super-canine trick of PASSING said undigestible material & coming out stronger/ballsier/feistier than ever before.  I was gonna mention the $120 universal remote he ate & the fact that as Cal scooped poop one day, he located our volume + and volume - button protruding from the shit.  I was gonna detail out that he also devoured not only my favorite pair of $40 Reef flip flops (just one), but also 3 Squish pillows, 26 g-tube pads, a ballpoint pen, the squishy top off a homeopathic remedy bottle, Cal's favorite UnderArmour shirt, my favorite hair brush, 2 beach towels, a AA battery (which passed with ease, though ended up slightly rustier than before), one of Lola's bibs, Scott's lucky Adidas hat & a flashlight.  I was gonna tell you how when he does these things, he makes me soooooo angry & I may or may not tell him he is a total shithead but how one apologetic, white-eyed glance from this pooch MELTS ME & makes me forget it all & reminds me of all the love and happiness that he brings to our family on a daily basis, both humorous as well as mischievous.

I was gonna tell you about the 417 emails in my personal inbox, most of which require some sort of a response.  And the unfinished shitstack of notes on my desk of things I need to do but cannot find time to complete.  And the 3 blinking messages on my answering machine.  And the 14 voicemails saved in my inbox on my iPhone for months now.  And the 93 messages in my Facebook inbox.  And the countless notifications that come through via Twitter, Instagram, Facebook, etc. on a daily basis, all of which I read & respond to in my head but cannot find the time to ACTUALLY respond to.  And the MANY texts from friends about getting together & phone calls & invites & commitments & graduations & weddings & babies being born... and how inadequate I feel about not being able to keep up with my day-to-day life enough to even keep in touch with all these people -- YOU! -- who are so thoughtful & caring in my life & who DESERVE my response, but how unable I am to find time to even SLEEP or process Lola's situation or my own situation & attend basketball games & art shows & appointments & yearly physicals two years late (!) & meetings with IEP teams & accountants & new doctors & potential future doctors & nurses & entire TEAMS of people here to help me & my girls.  Here I am struggling to even find time to take a dump & eat & exercise & sleep more than 30 min. a night but I SOOOOO want to be all things to all people.  I was gonna tell you all about how I feel I am half-assing my ENTIRE LIFE every. single.day & I fucking HATE THAT SHIT because that is SO not who I am.

I was gonna tell you how much I rely on being connected -- my computer, iPhone, texting, emails, phone calls -- and how much I wish I didn't have to live this way sometimes.  How I love that I can reach people at the drop of a hat but how sometimes I just need to not be reached.  How guilty I feel that sometimes I "escape" on my phone to play a game or try to clear 7 emails while at a stoplight (shhhh!) or respond to that text from 3 weeks ago & in doing so, sometimes I neglect my immediate family.  I was gonna tell you about feeling torn & priorities & finding the balance.

I was gonna tell you about my family's brush with a tornado on Sunday, how completely powerless we felt, how I've never before in my life been certain we would be hit since the 1991 Andover tornado which missed our house by 1/2 mile until this day, how the 30 min. of sleep the night before -- though clouding my judgment & making me more emotional -- felt so trivial, how all my fears/worries/concerns about Lola completely paled in comparison to the potential seriousness of the situation at that moment.  I was gonna tell you about answered prayers, feeling watched over, & my faith.

But my delay in updating coupled with tragedies of late makes all of the shit I mentioned above seem really insignificant.  I am refocusing here, putting emphasis where it is most needed, sending prayers to our neighbors to the south (2.5 hours away), and remembering what is really important today.  We have each other.  Nothing else.  Only love.

xo

Shock & Awwwwwww!!!

Yep, you guessed it.  This suuuuuuper long-overdue post is gonna contain some pictures/news that will SHOCK YOU as well as some pictures/news that will make you say, "Awwwwwww!"  Real original, I know.  My mind is a jumbled MESS right now due to a stellar combo of NCAA March/April Madness paired with a heaping dose of sleep deprivation followed up with some PMS + Cortisol + possible Starbucks addiction thanks to the fact that my girl wants to party all the time, party all the time, parrrrrrrrrty allllllllllll the tiiiiiiiiiiiiiiiiiiiime.  No seriously, ALL THE DAMN TIME.  Like all night.  Like she is completely relentless when it comes to avoiding sleep.  I SHIT YOU  NOT, Lola does not require sleep at all.  Not even during the day except maybe in 10-20 minute increments.  I think she is a vampire.  Her skin IS reeeeeeeeally pale.  She hates the sun.  She has superhuman tone strength.  Hmmm...

Anyway, let's start with the "Awwwwwwwww!"  These pictures truly touched my heart.

The PERFECT pictorial representation of our girls' relationship!!!

Rare, peaceful moment circa 9:00 am when she FIRST fell asleep for "the night."

Romeo (4 year old Whippet) & Pre (15 1/2 year old Italian Greyhound)

She loves him SO. MUCH.  The feeling is mutual.

The burprag/dropcloth is crackin' me up in this pic!  I barely noticed it was there before I snapped this shot!  Stacks & stacks of these bad boys adorn my house, thankyouverymuchREFLUX.  Grrrrrr.

Float like a butterfly, sting like a beeotch!!!

SO proud of Cal's dedication to puttin' in work at the gym -- EVEN ON VACATION!!!

So grateful for hands that sometimes touch... xo

Now for the SHOCK!!!

After nearly 12 years, we have decided to fit the girls for wheelchairs.  This has been a hard decision for us for many reasons.  However, now we know that it is best for the girls.  And it is best for us (& our backs/bodies).  

Claire & Lola will be getting an Ottobock Kimba Tandem Pediatric Wheelchair.
You guessed it, it's a "twofer." It will make life SO much easier for our family to get out & about!
(picture taken from Ottobock website)  

This wheelchair is handy because it will allow Scott & I to venture out with the girls by ourselves if need be.  In addition, it is possible to configure the seating to best accommodate unique situations.  For example, Lola will likely ride bitch, facing AWAY from her sister, so as not to projectile puke on her at will out of self-defense.  Claire will ride shotgun.  We are still undecided whether to have her rear-face or forward face, though we are hoping she can tilt-in-space for comfort/sleeping.  SO!  EXCITED!!!!
(picture taken from Ottobock website)

Apparently polystyrene beads ingested by the pillowful ARE able to pass through a puppy's digestive tract unchanged & without poisoning said canine.  Good to know.  O.  M.  F.  G!!!  SCARYYYYYY!!!!!!!!

Meet Tits McGee!  
(AKA Mrs. McGee)  (AKA "Angel")
Yep, you guessed it!  We bought a muthafuckin' GOAT!!!!!!
And yes, I am writing this on April 5th, not April 1st.  However, we will not be keeping Tits Mrs. McGee at our home; instead, she has a "surrogate mother" of sorts who will be caring for her & helping out with milking & such.  We got her an awesome Wichita State collar, and we plan to go meet her in person next week!  Stay tuned for more pictures!  Anxious to have a guaranteed way of getting goat milk for our girlies!!!
(Picture from Mrs. McGee's former owner)

Angelic indeed.
Mrs. McGee is a LaMancha Goat, for those of you keeping track.  LOL
(Picture taken by Mrs. McGee's surrogate mother)  

For the record, YES, one of them DID just shit their pants.
God Bless Lambert's Cafe, "Home of Throwed Rolls!"

Welcome to Dumbass, dumbass.  I mean Dumas.  I mean Doo-moss.  Or is it Doomuss?  Whatever.
I probably won't be going to that auto repair shop anytime soon.  Ha!

Still in shock that my husband has the ability to make THIS with his own two hands.
Check out Infinity Art Glass!!!  New website coming soon!

I up & dyed my hair brownish-red again, and I LOVE IT!
Ignore the shameless selfie but DO notice the seat belt.  Safety first, G.

Stand up, sweet Claire!!!  SO AMAZING!!!!

I could not be prouder of my hometown team, the Wichita State University Shockers, making it to the Final 4 in this year's NCAA tournament!  I graduated from WSU myself back in ummmm, 2007 (give or take a decade few years!!), and I have been attending men's basketball games since I was born.  I love this team.  I love their hard work, dedication, their heart, their ability to play angry, and how much they are SHOCKING THE WORLD with their success.  We are 40 minutes from a National Championship game -- Let's DO THIS!  GO SHOX!!!

The beauty of the situation was that Cal was able to witness both the Sweet 16 win as well as the Elite 8 win to make it to the Final 4.  Here he is pictured with the West Regional's Most Outstanding Player, Malcolm Armstead!  SO. PROUD.
A HUGE THANK YOU to our fam, Nichole & Jeff Sammon, for taking him to LA for this once-in-a-lifetime experience!  He loved every second of it!!!

The gang in LA!  #shockerfaithful  #notsatisfied

We SO belong.  Let's beat Louisville tomorrow!    #playangry  #finalfour  #shockernation

For all the haters who don't believe WSU should be in the Final 4, here's what Lola thinks about that!!!


"Just because you said we couldn't, we will..."

xo

Photo Shoot # 8,294

I don't think it's a mystery that I take a shit-ton of pictures of my family.  I have always felt (since day 1) that having lots of pictures was important because I never want to forget ANYTHING.  IT ALL MATTERS.  The milestones (no matter how wee), the setbacks, the catastrophes, the clusterfucks, etc. -- I WANT IT ALL.  I want copies on my poor, overstressed hard drive & on my trusty iPhone (which currently has 5,211 pictures on it, and I've deleted a crapload), and I want them forever ingrained in my memory because I never want to forget ANY OF IT.  EVER. 

I did a mini photo shoot with my girlies last week for the R-WORD.ORG SPREAD THE WORD TO END THE WORD DAY, and as I was reviewing them to pick my favorites, I had to laugh at some of the bloopers I captured as well.  [Note:  I am *NOT* a photographer.  I'm just a mom who carries her iPhone everywhere who couldn't tell you what aperture or f-stop or ISO meant to save her ass.  Maybe someday in my "spare time" I will brush up on those!]  People may automatically assume that because the girls are developmentally like newborns (or so "they" say) that they're incapable of having "normal" reactions to their surroundings.  Or they may think that they have no personality or no ability to show how they feel.  Or they may wrongly believe that they're "not in there" or "a vegetable" or maybe even not worthy of life. (Don't EVEN get me started... That's why I moderate the comments on this blog.  There are some evil people out there who can kiss my ass.)

I must confess (SO sorry to rat you out, my little "angels!")... Claire & Lola are soooo 11.5 & 6.5 years old (and all that each age entails!).  They are very much siblings.  They are definitely capable of fighting, drama, sibling rivalry, and "talking back" to their parents and/or brother.  They don't hesitate to express themselves and their feelings.  They may be non-verbal, but their thoughts are definitely HEARD.  They are mouthy, emotional, silly, and I swear to GOD, they get my humor.  They show love, they comfort one another and us, they respond to their surroundings, and they most definitely know us/know they're loved/know they run this household/know they're "the shit"/know they're the founding OG's of the WSD (West Side Dwarves)/etc. That's the bidness, man. (Shout out to Snoop D-O-double G!!!!! Our girls are *SO* not on board with this whole "Snoop Lion" bullshit.)

On that note (!), I will let the below pictures speak for themselves.  In sequential order, I present to you my bazillionth micro mini photo shoot...

My three favorites... God, I love these girls o' mine.

"Everything has its beauty but not everyone sees it."  ~ Confucius

xo