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.


  1. I'm glad you listened to your husband, mother, and friend, and "re-tooled" your approach to your advocacy and awareness post. Those defense momma-bear feelings tend pop up when you feel exhausted by the hard work of protecting your child's feelings and setting your child on the best path to taking care of her/him self. I know. I speak, not because I have a child with dwarfism, but because I had a child with Juvenile Rheumatoid Arthritis (diagnosed at age 3). This daughter, now an adult, has a young son with Hypoplastic Left Heart Syndrome who also has an undiagnosed skeletal dyspalsia (which may not necesarily lead to short stature). She was chosen to be his momma, I'm sure, because of her own physical struggles. Aside from that, what I wanted to say, is based on my own experiences with disabilities of any nature, my approach is to teach your child at the very beginning to be her/his own best advocate. As a Christian, there is a particular saying that I like. "Preach the gospel daily, and if necessary, use words". Young babies, and toddlers are great imitators. You can see yourself in their pretend play, and in their expressions when they become verbal. They will imitate you, so just make sure that they are imitating their own advocacy. My daughter spend her whole childhood in surgeries, casts, crutches, and a wheelchair. At the age of five, her Rheumatologist told her that it was time for her to own her disease (not her parents). She had to learn to discover her abilities and her inabilities. She had to discover when to pursue something, and when to turn direction. Her self esteem came, not from parents who told her she was so pretty (in hopes of deflecting those who would call her deformed or ugly), but from parents who allowed her to discover her assets and allowed her to discover her physical liabilties. Your daughter will need to advocate for herself, she can start now, with your help, even before she knows what she is advocating for. Your actions toward her, in public and in private, and her growing self esteem (based on her self discovery) will be her advocacy, better that any words can. Nanette Lescher (if on facebook. look up my grandson's page: Aiden Ray Lescher-HLHS)

  2. I have so loved watching your sweet lilah grow over the past year and watching you step into your new role of being her momma so, so gracefully! YOUR strength and perseverance clearly shine through to her, and that is not something that should be overlooked! I think a lot of how babies behave and how their personalities develop has to do with their parents, and it's clear that you and your husband are doing a terrific job - with both of your beautiful kiddos!

    Your comment about how we are all the same brought me back to an experience I had the other day that was so raw and beautiful it made me shed a tear in the grocery store. I was shopping with my daughter and a black man passed us by in the aisle. Marleigh stopped and stared right at him, and having never seen a black person before (we live in a small suburb), she had a look of confusion on her face. The man noticed and for a second, I was nervous that he would be offended. Instead, he turned to me and laughed, and said: "that's the look of a little girl who has never seen a black man!" I awkwardly chuckled back, and then he turned to my daughter and said, "I look different, but we are the same." His reaction to something that could have been offensive to him was so out of the ordinary and meaningful to me. It made me stop and think.

    If only everyone in the world could think that way! We may look different to the naked eye, but deep down inside, we are ALL God's children, and we are all the same!


  3. Love this! Especially the last little bit. Thanks for sharing and being honest :) Love the photos.. she is so, so sweet!

  4. I just found your blog yesterday & can't stop reading it...I have a little girl "Pip" with Down syndrome & just experienced our "first" Down syndrome Awareness Month- Although our stories are different, having daughters with different diagnosis, I find they both have so much love & hope...Both try to share with others the beauty in looking a life a wee bit differently...Just wanted to say hello & that I look forward to following your journey...
    t @ Happy Soul Project

  5. I love your attitude... advocating is for the everyday awesome our babes are- not just for the things that are major. Glad your hubs and mama caught you ;) And yay for the Korpai family- they keep us all on our kindness toes, for sure!