Wednesday, February 23, 2011

Size matters?!

"Even the smallest person can change the course of the future."
~J.R.R. Tolkien
December 31, 2010
 Being the parent of not one but *TWO* children with dwarfism, I am POSITIVE that my view of what “tiny” is probably is quite skewed.  As mentioned in this post, I DO see it more clearly from time to time.  I won’t lie, being a stay-at-home Mom to my girls & spending 24/7 (mostly!) with them, I have become callous to their petite size.  But if you knew me well & what we’ve been through since Claire’s birth in 2001, you’d know that I am more than a little aware of just how small my girls are & the implications that go along with this.

Without boring you with the details, let’s just say that we’ve been through it all with Claire regarding trying to “figure it all out.”  After TONS of tests, blood work, appointments, weight checks, researching, questioning, worrying, freaking out, and panicking… we realized one thing & ONLY one thing.  THIS IS CLAIRE.  This is who she is.  She IS tiny, she has dwarfism, she will NEVER be typical in size or development, she is clearly charting her own course in this life, she is not just beating but SMASHING the odds against her (she lived WELL past age 1, Dr. Dobyns, thankyouverymuch!), and this child represents nothing but pure love.  Who are we to judge and/or try to change her life’s path??? 

So, our goal (after we finally got our shit stuff together!) was to just honor who Claire was & OPTIMIZE HER LIFE in whatever way we could.  

That has been our mission with Lola, too.  And it has STILL been a challenge!  Lola is MUCH tinier than Claire at the same age (to the tune of 4-5 lb. lighter?!?!).  Crazy.  I am much less concerned this go-around, mostly because I’ve stopped the whole “tiny = borrowed time” thought process in my head & I burned those evil $475 digital baby scales.  Kidding about the latter, but trust me, I SO wanted to SOOOO many times! (ditto ALL scales!  LOL)  Obsessing about the numbers BLOWS.  I’m done with that crapola.
I DO still occasionally whip out my trusty head circumference measurer thingy... as you can tell, Lola's TOTALLY learned the "Go to Hell!" look from her sister... LOL  And YES, her head circumference HAS only hit 12.25" circumference, sadly.  (up from the 10's at birth)  WOW.  Yes, this DOES still "bother me" ~ but what can I do?  Love the HECK outta that tiny little noggin!!!!!!!!  How can you not?!?!? Poor kid probably gets 200 kisses (or more) a day!  xoxo
Life is wayyyyyyy too freakin' short to waste it WORRYING.  I was once told that "worry is interest paid in advance on a debt you may never owe."  I love that!  It also reminds me of a conversation I had with a friend who lost a child a few years prior.  We were having a conversation about life, loss, and how it's humanly possible to "move on" beyond something so devastating.  I told her that it felt wrong to "ignore" this diagnosis Claire & Lola were given, and to do so felt like I was being naive.  She told me something I'll NEVER forget.  She said, "Gwen, to grieve NOW while your daughter is still alive is wasting the time you have with her.  I'd give ANYTHING to have more time with my daughter.  Please don't waste the time you do have.  You will have a lifetime to grieve... LOVE NOW."  And we have... ever since.  

I guess that is why the girls' size really doesn't seem to matter to me now.  It used to consume my thoughts in a negative way, but I now can appreciate who they are & see the humor in the situation SO much easier.  For example...

Scott always cracks me up with his PF Chang’s story… OK, so we went out to eat with some friends & our girls at one of our favorite places!  Of course, we got "the ushe" ~ stares, looks, whispers, etc. when we arrived & during the meal.  Even the greeters remembered us when our friends made reservations, as they asked if we needed high chairs/kids’ seats, and they said, “No, they’ll just hold them” (we always do!), and the hostess said, “OH!  I totally know who you mean!  Those girls are sooooo cute!”  HA! 

So anyway, we carried "the local celebrities" out as we left (stuffed beyond belief!  YUM!), and the “Swivel-Head Phenomenon” occurred upon our departure.  Just picture “The Wave” at sporting events – everyone raises their arms at the same time all the way around the arena to create a wave effect.  A similar thing happened at Chang’s… heads swiveled in a wave fashion to stare at the dwarves as we walked out.  Scott was about 15 feet behind me (as I carried Lola), and he said it was a riot watching everyone crane to see the tiny little one in my arms.  Never quite know how to take that… or being so “known” in our town.  But sometimes you just gotta laugh.
December 25, 2010
Know what else makes me laugh about their size?  The fact that because they are so small, the below things are SO much more hilarious with our tiny dancers.  :)
Claire ~ December 2001 ~ nose-to-nose with the biggest snowman EVER!  (the snowman clearly won.  LOL)

Claire ~ Fall 2002 ~ one of her favorite ways to fall asleep!  HA!

 
Claire, 16 months old, with her newborn twin cousins ~ she thought she was a triplet!

Claire ~ December 19, 2004 ~ age 3 ~ best cheerleader EVER!!!

Claire, 15 months old ~ showering with Daddy ~ yet another (tiny) full moon from our girl!  LOL

 
Lola ~ age 4 ~ and yes, those ARE 2 liter bottles.  And yes, she DOES appear to be "taking a knee" so she can go to the 20 yard line.  HA! 

 
Mommy & Lola ~ age 4.5 years ~ workin' the Twisty Towel, As Seen On TV.  HAHAHHAHAHA!  I think we wrapped it around 3 times!  LOL

Cleopatra pose!  Love you, Mrs. Pocket!
Quite a difference on the fit, no?  HAHAHAHAHAHA!  Twisty Towel lady's head is freakishly huge.  Yikes.  LOL

 
Claire ~ age 9 months ~ tomahawkin' it! 

Lola ~ age 4.5 years ~ being the ball?!  Excuse the "high quality shot," it was taken with my $10 "free" phone (yes, I got a rebate for a $10 piece of crap phone from AT&T!!!).  I'm SO pushin' for an iphone... I NEED IT.  Really.  I do.  :)  Does Lola not look TEENSY compared to the pic of Claire above?!  She's like 4 full years older?!?! WTH???!!!

 
Lola (age 4.5 years) & Daddy ~ nothin' but love.  xoxo

"'Cause sometimes that mountain you've been climbing
Is just a grain of sand.
And what you've been out there searching for forever
Is in your hands.

And when you figure out
Love is all that matters after all,
It sure makes everything else
Seem so small."

~ Carrie Underwood, So Small

9 comments:

Heather McD (Heather Eats Almond Butter) said...

Such good advice to love NOW. :)

F the scales. Hate 'em.

jeanie@mageditor.blogspot.com said...

Oh how I love you and the very wonderful Mr. Hartley. You are a wonderful writer and never fail to "get me thinkin'". Your the best.

Lisa said...

You really do put things in perspective. Did you know that Dr. Suess has a hidden message in all of his books? In Horton Hears A Who, his message is a person is a person no matter how small. Abortion. I don't know where you stand on that but I am so glad you have the littles with you. They are so precious! You are amazing, Gwen!

lu said...

Excuse me, Lady, but do you know how many people's lives you change just by being you? For sharing all the beauty, joy, sweetness, truth and courage of yourself and your absolutely gorgeous family? I'm so happy you took the plunge with this blog, you go girl! Just keep showin the rest of us how it's done. xoxo

ANewKindOfPerfect said...

I echo so many of your thoughts! I cannot imagine wasting a minute of my day grieving over what MAY happen to Emily in the future. There will be plenty of time for that, if the time comes. For now, my job is to love on her and enjoy every.single.minute even when they are not so easy/happy minutes!

I love your pocket princesses. I hope one day I get to meet them and you in person!

Candi Cane Cooper said...

Claire is so beautiful . Enjoy her and share the love everyday. I do not have dwarfism but I am quite small 4'10" . I have to tell you that as an adult I love being tiny and use all the attention to my benefit. Teach your daughter to embrace it as my mother did. There isn't a day that goes by when someone doesn't comment on my siize. I just look at them and know that they are the uncomfortable one, not me :) besides AVEAGE is highly overrated , it's just average (lol) why not be exceptional instead ! Nice that Claire has you for a super mom !!Hugs to you both.
Xoxoxo

Whimsey said...

GREAT photos; you ALWAYS make me laugh - ALWAYS. So do the girls. AND obviously Claire's ahead of Cal on dunking - DODE to Cal. LMBO!!!

Stephanie O'Dea said...

"worry is interest paid in advance on a debt you may never owe."

what a fantastic quote. Thank you for sharing it.

Hey, does the twisty towel work well? I'm so tempted to get one, but my scottish side just won't let me. Is it any better than an ordinary towel?

Haya said...

i could't stop crying while reading your posts about your two lovely daughters!
I hava a little sister with the same condition. i used to be so ashamed of taking her out, and showing her to my friends.
but now! after seeing how strong you are i realize that i am a horrible person!!!!
i love your blog and i love your daughters, and i promes to show more love to my lovely sister!

thank you

Related Posts Plugin for WordPress, Blogger...