Thursday, October 17, 2013

Our Stance on Awareness

I just finished my blog post... read it to my husband, read it to my mama.  "No, " they said.  Try again.

They were right.  I was harsh, I was defensive, I was discussing the extreme and negative viewpoints concerning dwarfism that exist in our society.  My husband asked, "Why did you take that approach?" I responded, "I want everyone to know what is out there so they can see why it is so necessary to be an advocate for dwarfism.  To show how much more work needs to be done in our society."  Did I mention that October is Dwarfism Awareness Month?

But I don't want to be that.  I am choosing to not do that. (Thanks husband and mama.)  And thanks alot to my dear friend Tiffany who is challenging all of us to choose kindness for one week straight.  (Dang it!  Lol) {Week of Kindness} I am all about choosing joy and I am taking that approach in this post: talking about dwarfism awareness.

I love my daughter.  She is the air I breathe, the song I sing, the light in my life.  She has taught me more in one year than I could have ever learned in a school setting.  Mostly, she has taught be to be compassionate, understanding and kind.  She has taught me to celebrate life and not hide behind in the shadows.  She has taught me that different is oh so lovely and being comfortable in your own skin is the fastest way to happiness.

Before Lilah, I had little to no experiences with a little person.  I had never seen the reality TV shows where little peoples' lives were featured, I had never met a little person personally and I can say that little people never crossed my mind.  Chances are, you could say this about yourself too...

I struggle to communicate this next point... both of my children are so unique to me.  I see them for who they are, the glimpses into their future and their silly little personalities.  It is difficult when all I do is talk about how different they are to me and yet I want you to see them as a same as everyone else.  I think parents can understand this paradox. 

In following our story, getting to know Lilah, supporting her, rooting her on and loving her... you are helping to shed light to all of those with dwarfism.  I am a believer in people and until someone proves me wrong, I will always give someone the benefit of the doubt that intentions are good.  In my experience in the last year, we have had nothing but honest curiosity and productive questions about Lilah and her diagnosis.  {And perhaps it is because I live in one of the best places to live... look it up, it's true CNN Best Places to Live.  I love my town, just saying...}   Yes, we may get lots of sideways looks and I know the thoughts running through their heads sound something like this, "How in the world is that 3 month old almost walking!" Lol... But, in all honesty, people have been so good to us.  I have so much faith in people.

When it comes to dwarfism awareness, as a family, we have decided to let people into our lives.  We want the world to see our daughter as Lilah and to take the mystery out of dwarfism.  It is a rare condition and odds are likely that unless you found this blog because you have a connection to dwarfism, Lilah may be the only little person you "know."  Because of the history of dwarfism and some current views and exploitations that still occur in our society, it is important to my daughter's future for us to share her story.  And her story is one of victory, perseverance, and beauty.  (But she's not even one!  How can she already exhibit perseverance?  If you spent two minutes with her... you would giggle at her determination.  Ain't nothin' gonna slow her down.)

For each time a little person passes in from of your eyes via TV, social media, internet... I am hoping the experience is positive and you smile.  Not because that individual is a little person... for a different reason.  Perhaps they are chasing a dream, or smiling themselves, or having fun or loving life.  To me, this is how we raise awareness.  We teach, we love, we show kindness, we lose the chip on our shoulder, we see the good in people, we work as a team.  Different but same.  Capable, loved, unique... just like you.

You.  You have been a part of this team for a year now (if not longer).  When you share the blog, share our story, share our photos... you are taking the turn as an advocate for Lilah and for dwarfism.  You may think nothing of it... but you are making a difference.  I tend to go to the extreme in cases like this and think, "What if everyone was doing that?  What if no one was doing that?  What kind of world would this be?"  If everyone was accepting differences, putting kindness first and focusing on good... people would be touched.  And the later... I shudder to think about that.  Reaching people, caring for people, loving people... that is the whole point.  (And check out my buddy's incredible website: Understanding Dwarfism... he has dedicated his whole life to raising awareness.  And, he's amazing.)

"But you can't change the world!!" What does it mean to change the world?  If I have affected someone, I have changed the world and I am good with that.  "But I don't always want to be an advocate!!" That is fine... to each their own.  I do always want to be an advocate.  It was a role that was dropped in my lap, one that I gladly accepted.  If I have the chance to teach, I will.  My daughter may not share that opinion... that is her choice and this is mine.  "Don't you get sick of people always asking you about her size?"  Nope.  That's because I have decided to not let it bother me.  She is small, that is a fact.  Sometimes people feel the need to tell you about your child.  And as weird as that is, I understand it.  "Why in raising awareness and starting this blog do you have to be so honest in telling how you thought initially about having a daughter with dwarfism?  Aren't you worried you will offend little people?"  Hmmmm.... the hard question.  It is never my intention to offend anyone, especially someone that is a part of an organization that has been so critical in my healing.  When I first wrote my initial blog posts about "finding out" I immediately called me new LP friends and seeked their understanding.  They did.  Why?  Because... this is a story with a beginning, a middle and someday an ending.  I started with the truth.  That's all I knew to do... I didn't sugar-coat it, I didn't exaggerate it.  I told it like it happened.  I am not proud of how I felt initially, but I am proud of how I have changed since those beginning days.  If I didn't tell you the whole story, how could anyone relate, how could I help anyone and how could anyone understand how these challenges can be overcome.  All I have is my story and I have a feeling that someday my daughter will be proud of me for sharing the whole truth so I could in turn help others. {Yes, these are all questions I am asked frequently... I am always welcome to answering questions.}

I am thankful in this month especially for our friends in the LP Community that are also doing their part to educate and share their stories.  I have absolutely loved it and I have learned so much.  And Courtney Simross... you are the wittiest person I have ever "met."  Love you girl!  To all of my fellow bloggers... thank you for being brave to share your story.  The teamwork in this community to raise awareness together is so beautiful... we are all here to celebrate our lives, our differences, our loves.

Friday, October 4, 2013

One Year Anniversary

I woke up this morning and I looked at the calendar on my phone.  I scrolled 12 times to last October and there it was.  THE doctor appointment.  There was nothing special about it.  It just said: Ultrasound  2:15.  My mind went back... back to that day.

Let me tell ya, it was already shaping up to be the worst day ever.  I took Clay to the doctor in the morning for a check-up.  As soon as I got into the car I felt a wave of nausea.  I drove twenty feet to the gas station where I couldn't even make it out of the car before I was getting sick.  And then I proceeded to get sick at the curve.  My dress was soaked.  I was a crying mess.  It wasn't 30 minutes later when Clay did the exact same thing.  Let's just say, I was already in survival mode that day.  Looking back... of course I was.  I am a very intuitive person.   I was four hours away from getting life-changing news.  I think part of me already knew and my sub-conscious was coming to the surface.  When my ultrasound that day took way too long and when the technician didn't say anything... I kind of had a sense of something.

And yet the words hit me like a freight train.

They knocked me off my feet.  And I can tell you that I left a part of myself on that doctor's office floor and if I ever returned to that room again, I think I would quietly shut the door and lose myself on that floor again.  I would cry for that part of me I left behind.  That girl was naive, but guarded.  Entitled while incomplete.  I feel sad for that girl for she didn't know what she had when she had it.  I wish I could have shaken her and said, "You have everything right in front of you to be happy-- truly happy." And when things did not go her way, she was devastated.  Let me tell you... I am so glad that part of me was left behind.  I got a second chance at my happiness.  The process was was ugly and forced and difficult. When I left that room, I was very much broken.  There was a gaping hole from the me that was gone...

A year has passed.  Today, I let myself become swallowed in emotion as I read and reread our first e-mails to friends and family, our letters to our children before Lilah's birth, our letter to new parents of a little one and Lilah's birth story.  There is still pain there for me.  Pain in remembering how it felt to hear those words.  Pain in the fear of the unknown.  Pain in the future suffering we did for her.  But mostly, I wince with pain and sorrow for the time where I didn't understand how wonderful this news was for our family.

My doctor said exactly a year ago today, "In one year, you are going to wish nothing was different."

Those words were empty to me then.  In my mind, they were borderline offensive.  "How is this guy going to tell me how to feel about this?"  I couldn't make sense of them and I certainly didn't believe him.  In hindsight, I imagine I thought, "Well, I suppose we will get use to the idea and this word will sting less and less each time we hear it."  I had NO idea exactly HOW much these words would be a positive influence on our lives.  At the time, I could have never imagined that.  What has unfolded in the last year has been truly astonishing and nothing short of a miracle.  How much we have changed, how other lives have been affected by this sweet girl, how many fabulous people we now have the pleasure to call friends, how she really is moving mountains.  It is unreal and everyday, I have moments where I am left in complete awe of the whole situation.  One year later... we can proudly (and loudly--we want to shout from the rooftops), "WE WISH NOTHING WAS DIFFERENT!"

I am giddy with life.  Seriously giggly and smiley and punch-drunk-love kind of giddy.  I am the happiest I have ever been.  From a year ago to being pushed off the edge into that dark ravine where I was scared out of my mind and hollering for help, to turning around and having the courage to take steps forward to start the journey of "different than expected," to learning how to be grateful for the journey and finding beauty in the growth along the way, to being so overwhelmingly thankful to God for having the opportunity to go on this journey in the first place.  There is so much peace in allowing Him to choose our path for us, accepting our role given to us by Him in this life and loving everything along the way.

At ten-months old Lilah is such a light in our eyes.  She is so perfect to us and we are beyond smitten with her.  If you were to meet her, first you would notice her eyes.  They are like reflecting pools.  You can see the world in her eyes; they are so deep, soulful and mesmerizing.  Next you would notice her smile.  You would think you were special because you made her light up and giggle and grin.  I would not tell you that she is like this to everyone.  And then you would notice her personality.  She has so much spunk and fire and ambition.  After being with her for a few minutes, you would already know that she is going to be a leader, do great things and go after what she wants.  She is getting ready to take her first steps and in the next couple of months we will get to witness her walking.  It's like she's saying to the world, "I got this... don't worry about me."

And while I think I should have been happy all along... it was really her that I needed to be complete.  We needed her to find ourselves and although we feel many steps closer to where we are going, we know we have much more in store for the future.  Our work is just beginning.

And to you... my family, my friends, my readers, my cheerleaders, my fellow-mamas, my lpa community, my hometown, my new town...you.  I think I shed some of my biggest tears for you today.  Why on earth you have embraced us like you have, I will never know.  The outpouring of love, the additions to our village, the safety net created... you are a part of that.  On days where you feel less than worthy...just remember how much of a difference you have made in our lives just by reaching out your arms.  You are important.  SO important to us.

I still try to take this one day at a time.  But, I don't fear the future anymore.  I look forward to it.  I have her.  I have them.  I have all I ever need.

God bless you and thank you for being a part of our story.  Just by reading you are helping our advocacy to spread awareness to dwarfism.  With October being Dwarfism Awareness Month, I will be talking a lot more about this topic coming up.  For now, we are grateful for our 365 days of growth and we look forward to celebrating with our hometown this weekend! XOXO 

Photography by http://www.michelletiekphotography.com/