Wednesday, July 24, 2013

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!


Monday, July 15, 2013


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.


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

Wednesday, July 10, 2013


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.

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