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Sunday, July 6, 2014

Stranger Love

Tonight was the first night of the Little People of America National Conference.  Tonight I got to meet so many people that I already know so well! Tonight I got to step outside my comfort zone and onto a stage with a large room full of people.  I got to speak about anything I wanted to... here was my speech:

When we found out about my daughter’s dwarfism diagnosis almost two years ago, I was 33 weeks pregnant.  As the doctor told us the news, my husband and I smiled at each other and said, “No worries!”  We hugged and rejoiced that our baby girl would be here soon... and we were over the moon.

Actually... that’s not what happened... and if I could go back and rewrite my story, perhaps that would have been the edited version.  And trust me, I would have loved to get up here and give you such a lovely story.  But it’s not the truth.  

Our story isn’t perfect. It’s not conventionally pretty.  It’s not miraculous. It isn’t tied up with a big red bow.  It’s one thing: real. It’s not sugar-coated, it’s not skipping over the painful parts, it’s not pretending.  It’s real.

The truth is... when the doctor told me the news... I heard the words, “daughter” and “dwarfism.” It was just me, my one-year-old son and my doctor in the room.  The doctor put a box of tissues under my nose, said he was 99% sure and he left the room.  The truth is... I sobbed and I shouted, ”Nooooo,” to the empty room. 

I was scared.  And when I reflect on what exactly the fear was... it was the fear of the unknown. To my recollection, I had only ever seen a little person once in my life.  I had no experience to draw from.  I just didn’t know what to expect.  And that big question mark was filled with hundreds of questions that were consuming my head.  What does achondroplasia mean?  How do you even pronounce it?  What will her quality of life be?  Will she be bullied and the biggest fear of all... will she survive the birth?

The truth is.. my family and I felt overwhelmed.  We felt panicked.  We were seriously scared. 

I wanted to close my eyes and go back to before the news... before when I had no concerns, no worries, before... when I knew my baby would be ok.

We decided to share our story within the first three days of learning about our daughter’s diagnosis with our friends and family.  And the love and support we received was unbelievable. 

But it was this phenomenon I call ‘stranger love’ and the six words, “everything is going to be ok,” that really allowed me to take a deep breath and change my whole perspective.  When I told my mama and my sister-in-law about the diagnosis, they both separately found and reached out to Miss Jana Gray (Momma Gray), the president our Little Hooisers Chapter in Indiana.  She was the one that spoke those six words to me.  And you know what... I believed her.  She was my first contact with the LPA (Little People of America).  She was a stranger that loved us like we were family.  And the crazy thing is... she didn’t know a thing about us... but she loved us anyway.  It was true unconditional love.  And minutes after Lilah was born... flowers arrived from the LPA.

Thank God for Momma Gray.  Thank God for the LPA.    

There is alot of debate lately... regarding individuals with disabilities and the, “Don’t call me an inspiration!!” And I understand this.  The idea of putting individuals with a disability up on a pedestal and saying they are inspiring simply because they live a “normal” life... yeah... what else would they do?  I know... I get it.  But, Momma Gray... you inspire me.  Not because you are a little person, not because you live a “normal” life... because you taught me how to make room in your heart for someone you have never met.  You taught me about compassion and about how those six little words, “Everything is going to be ok,” can change it all.  

Perhaps it isn’t the living with a disability that is inspiring... perhaps it is the way you live with a disability that is inspiring.  Perhaps it is an outlook, an attitude, a willingness to help others. 

There have been many more strangers that I have connected with in this community since... What a lovely community this is. I am truly inspired by it all. 

I know one thing for sure... I will never know what it feels like to be a little person nor will a little person ever know what it feels like to be an average-height mama to a child born with dwarfism... it is just a bridge that we will never be able to cross... but, it doesn’t mean we can’t learn from each other.  And there is so much value in that.  

I feel like I got to see the world of insensitivity firsthand because... I was living in a life where I didn’t have anything to be sensitive about and I just didn’t get it.  The reality is... I wouldn’t have supported mistreatment, but I may have been oblivious to it or have done nothing if I was aware.

But the truth is... it is not ok. 

For my daughter I want two things... I want her to live in a kind world and I want her to know how to handle a cruel world.  So as a mama, I put on my heavy-duty boots and go out into the battlefield of this world and I stand on the front line of the equal rights fight.  Every battle won is a step in the right direction.  Let me say that again... every single battle where we win... we are making this world kinder. 

For example, my buddy Chelley who will be speaking for you in a little bit, she got the m-word removed from jars of pickles.  And she had to go through hell to do it.  But she did it.  And by doing so... she made the world better for our children... and for the world’s children.  Every battle we fight together or on our own... we are doing it too.  Telling someone to not use the m-word, reading books about differences in elementary schools, standing up against hate words or rudeness or inequality.

Thank you.  Thank you for those quiet, private battles that you fight.  Thank you for getting together and making a big deal about a wrong-doing.  Thank you Miss Becky for going to all of our schools, thank you Miss Patti for the huge dwarfism awareness tattoo on your arm and allowing yourself to be the conversation starter to educate.  Thank you Miss Jamie, Miss Sandy and Mr. Jimmy for raising awareness in such an thoughtful way. 

Let me tell you something... don’t underestimate the power each of you have to make a difference in this world.  To some, it might not take much to leave a big impression. I believe that if one person is affected, becomes sensitive, is aware, is inspired to be better, to do better... than the world is changed... because of you.

Don’t be afraid to be an inspiration.  

One day, my daughter will know firsthand that this world can be cruel.  Don’t we all know this?  I found out in the 6th grade when the entire student body launched an “I hate Leslie” campaign led by a few particular girls.  And I call it a campaign because there were buttons and signs and what seemed like campaign rallies.  Or maybe that’s just how I remember it but the buttons were real.  And then I received a note listing out 34 reasons why this campaign was justified.  Which was really helpful for me to know exactly why I was an outcast.  #1 You chew your food with your mouth open... which was probably true... I was ten.  

My parents knew the parents of the ringleaders... and they could have easily called them up and made a fuss... but they did something great... they let me go through it.  They talked to me every night, gave me great ideas and strategies to try and one day I came home to signs all around my room with encouraging quotes and words taped to every nook and cranny.  My favorite was a "Top Ten" ways to overcome your bully in my dad’s handwriting taped to the mirror.  #10 Don’t be afraid to look you bully in the eye.  I folded that paper into a small square and kept it with me that year.

This world can be cruel and by trying to protect my children from the truth of this world is actually doing them a disservice to be able to handle these interactions in the future with class.  My parents were teaching me how to be strong.  And it worked.  It was hard at the time... but I am better for it.

I want to teach my daughter how to hear unkind things and understand that they say more about the person saying them than they ever will about her.  I want her to know unconditional love and support and know we are always here for her.  I want her to know it is ok to be real and be herself.  That is enough.  

I want her to have people in her life that she can look up to.  People that inspire her.  And I want her to know other individuals with dwarfism... Isn’t there some comfort in knowing, "Hey we are doing great... and you will do great too?"  Is it so bad to be inspiring?  Is it so bad to be a stranger showing love?  I have found the more inspiring I am, the more inspired I become.  The more I show strangers love, the more love I receive.  It’s crazy, but true.

In the past year, I have received at least three emails/messages/phone calls per week from mamas like me.  Mamas of average-height with a child born with dwarfism.  It is the one thing I don’t write about.  Counseling these mamas is a private matter.  It’s what I call “behind the scenes.”  

For me, being real has allowed many others to relate to my story.  This is the stuff that people don’t see... I have been able to be that stranger giving love... saying those six words, “Everything is going to be ok.” And then I get to share more about how it is actually going to be better than ok.... because, you guys... I have a secret (that isn't really a secret)... different is beautiful.  

And I suppose I was told this in my life... and I am not sure why I wasn’t convinced.  I felt like I was living in this world of teetering on the fence with one foot in the world of conformity and blending into the crowd, and the other foot in the world of being unique and standing out on my own. But seriously, there is something so beautiful about being different! And I feel like I have unlocked this new-found secret and it feels like freedom.  Freedom to get to be you.  Freedom to get to be real.  Freedom to get to change, and learn and grow.  Different is beautiful. And having Lilah has been one of the best things that has ever happened to me and my family and I wouldn’t change a thing.

I just want to leave you with a few final thoughts... it takes a village to raise a child and this parenting thing isn’t easy.  Be a part of someone’s village, even if it means showing stranger love.  Encourage, lead and live by example.  Help propel us forward in the movement of equal rights and if you have the opportunity to be a part of something that takes us backwards, simply say, “No thanks... we have work to do and I will not allow anymore stereotyping of little people on my account.  No thanks.” Take initiative to help us in educating, raising awareness and removing the m-word. Be inspiring because of your heart.  And lastly, be real, be yourself... because you are enough.

Oh yeah and one of the bullies that I referred to earlier... she’s been one of my best friends for over 20 years.  Forgive people. Give people the benefit of the doubt.  People can change. Your story doesn’t have to be conventionally pretty... it’s ok.  What makes a story beautiful is what emerges from the brokenness.

God Bless!


4 comments:

  1. What an "inspiring" speech my "inspiring" friend....

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  2. That last sentence is a knock-out- really good writing and affirming for another mother of a two-year-old daughter with achon! Thanks!

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  3. I was so glad to meet you on the beach yesterday and most especially to be able to read your speech. We weren't able to go to the speakers the first night and I was sad. I loved what you wrote! I have been grateful for our association with LPA. My husband is a little person but when we married neither one of us knew too much about dwarfism since he was the only one in his family and he hadn't had any exposure to LPA growing up. Its been a help to us as we have raised our children. I've felt stranger love more than once helping me through more than one time of anxiety and we've hopefully been able to give a little of that back. We have a family blog at beaulieubunch.blogspot.com if you ever are interested to see our family. As a "mixed height" couple I've found we are a little unique in the LPA community though it's helped us relate to other new families with both our unique perspectives.

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  4. Wow! I don't have a child with dwarfism, but I do have a child with a disability and your story touched me in so many ways. Thank you far sharing your life, thoughts, strengths, and battles.

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