Wednesday, July 10, 2013

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

12 comments:

Lisa Hill said...

Awesome blog, as always. Lump in throat. Our girl has the same effect on some people too, maybe not to the same extent as your double trouble!
Much love from NZ

Mary said...

Beautiful. Every time you post pictures of them I'm reminded of what precious gifts they are from God! Seriously! Anyone who has known your family knows what a treasure your children are. They bring out the best in us, and as a friend put it, are 'little flashlights' that shine on our selfishness and remind us of all the things we need to work on to be better human beings and better parents.

Amanda Byersdorfer said...

I love this blog, as a mom with a child with special needs I totally get what you are saying. Im so glad you run in to people who hug and love on you and the girls. You are awesome!

Amanda Byersdorfer said...

I so love this blog! Im so glad you run into people who cherish your girls and you! As a mom of a special needs kid I know how awesome of an experience that is. You are awesome :)And PS that double wheelchair is the bomb! Nice wheels girls!

Donna Leger said...

I am not good with words at all and I so love how you are good with expressing yourself! I read what you say and think of certain things you say often in my days! And yes you do "change peoples' opinions about children with special needs or maybe help them not fear the unknown with kiddos like ours." --- You say it spot on. You're not fake and not trying to impress. You're you. Beautiful you! With such a unique special beautiful family! xoxoxoxo

mama of many said...

i love reading your blog.
you are an inspiration.
you are able to put into words so many of the things i feel and think but can't find words for.
someday, i hope that Teal'c and I can meet you and your girls. (and of course the rest of our families meet as well)

Lisa Radley (Australia) said...

OMGosh Gwen you have hit the nail on the head right there!!!! I usually sit with a silent grin or a silent tear reading your posts and sometimes even a hearty chuckle!! Our 18yr old daughter Alannah has Spastic Quadriplegic Cerebral palsy, epilepsy, severe scoliosis, she is PEG fed and also blind. Needless to say I would NEVER say "I know how you feel!!" But I understand where you are coming from!! I believe over the years my emotions have some what hardened and I don't remember transforming into this pushy, abrupt and very (how shall I put it..) Black and White person!! (Definitely no grey here!!! lol)But the one thing that reduces me to tears EVERY time is unexpected praise and love from some random passer by! They don't know me..they don't know how sometimes all I need (but certainly do not expect!) is just a little pat on the back, a little reassurance that yes I am doing the right thing by our beautiful sweet "forever baby". So for you Gwen...Keep up the good work, you are an AMAZING mother. Consider this my pat on the back to you. Thank you. ox

Brett Hartley said...

We love those girls with all our hearts. We see them as "special". Not for their needs but for who they are. Beautiful, unique, human beings that are part of our family. And even though you down play how special you and Scott are. I don't know any other people in the world that would be better parents for those girls than you guys. Love you G

Dawn @Lighten Up! said...

oh, I love you Gwen, and your whole family. Can't wait to meet you all someday. It'll happen - you know it!

PEGGY H said...

I LOVE THIS FAMILY!!!!!

Anonymous said...

First of all, Claire's outfit but especially the shoes! OMG, they are too die for!
Gwen, you naturally attract people likes moths to a flame. It is because people know you (and Scott too) are safe because you are so honest. You aren't trying to b.s. anyone into thinking anything that is not true and real. I think most people appreciate that in others. Most people are walking around tied up in their own insecurities and trying to fit in. When I think of the time I spent regretting that my kids didn't act one way or another when they were younger...well frankly, it is embarrassing. My own insecurities caused me to waste a lot of experiences worrying that they might not be doing the right thing. How silly. Your girls (and Cal) are such great examples of your good, faithful, loving parenting. It is just rare to see parents who are totally committed to their children body, mind and soul. XXXXOOOO Jeanie

momsmom said...

My first thought was your reaction to being perceived as something special for what you do. I laughed when you said you laughed but really, you guys are special. There is something that just kind of makes one want to crumble for a minute when put on the spot with sympathy, compassion or praise. I feel like you represent yourself honestly here. I can only imagine how seeing you guys in real life must really affect people. If your total devotion and love for your kids is so emotionally obvious on a blog, it must really bowl people over in real life. Not surprised that you get approached with comments or praise!

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