Friday, June 28, 2013

She's Big Enough for Me

This past week has left me reeling a little... in a good sort of way, I suppose.  The last post on the m-word got lots of attention.  And for that I am grateful.  I want as many people as possible to read about our story.  I want to take the mystery out of dwarfism.  I want to answer the curious and educate the general public.  It can be a daunting task... and my late grandmother's cousin (who serves as a mentor to me) said it best when she said, that by writing and really putting myself out there, it leaves me with my head poking out of the crowd.  In other words... I am an easy target.  A target for praise.  A target for criticism.  A target for advice-givers and seekers.  These are new shoes for me and I am still trying them on.  But, I have made sure they are several sizes too big because I have plenty more walking to do.

With each passing day I feel the fire inside of me growing larger and larger.  It's my passion that is growing-- and such a paradox it is.  I am loving and I am fighting.  I am fighting because I am loving.  It may be difficult to understand how these two things can co-exist inside one person and yet work simultaneously and seamlessly together.  Yet, that is what is happening...

Last weekend I was fighting.  I was standing up against a hate-word that is so unnecessary and has no place in our society. And, I am beyond overjoyed at the number of people that have learned from that post.  "I promise" became my two favorite words and I got to hear them fall on my ears and I got to see them pass by in front of my eyes over and over again.  It was very rewarding to know that our village swelled in size last weekend.  And if you are new to our village.  Welcome.  I'll grab you a chair and some ice-cold lemonade.  Stay awhile.

My work has only just began.  God has chosen this family for Lilah... and I have a purpose to fulfill in His name.  I have lots of big ideas in the works and I am thanking you in advance for your support... more to come.

Back to the paradox... yes I was fighting for the end of the m-word.  But what I didn't get to talk about in that post was the other part of the fire inside of me.  The love.  The love for my family.  For my children.  For their future.  Many comments were directed at the idea that I should teach Lilah to ignore that word.  That I should teach her that "sticks and stones will break my bones, but words will never hurt me."  That I should teach her to rise above.  And yes, I did not get to go into all of what I will teach her in her lifetime last week... but please don't lose sight of the purpose of that post and please understand that just because I was a fighter, doesn't mean I am not a lover.  I think I can be the best of both which I am convinced, is why God gave her to me.  I do have a lot to teach both of my children.  And in time, I will.  And also in time, I will share with you what I am teaching them.

This is how I look at it (I love analogies... so here you go):

{My daughter, she will be learning to walk soon.  And as her mama, I will go to the path where she will take her first steps and I will scan ahead.  I see a branch, some rocks and a snake.  So, in anticipation, I clear the path for her.  (This is me trying to spread the word to end the word.  I look at her future and I try to educate society on dwarfism.)  I have also been working with Lilah by taking her hands in mine and helping her walk here and there.  She has been pulling up to a stand and we have been practicing those first few steps.  (This is me, teaching her, preparing her, building up her confidence.)  She is ready for the path.  She starts out great as I follow right behind her but, she steps into a little hole.  (Yes, there will be pitfalls along the way that I won't be able to prevent.  Opportunities to learn to watch out for the "holes" in life.)  But I can guarantee I will be there when she falls and help her to get back on her feet til she's off and running.}

It is what any mama would do.  You anticipate, you prepare and teach, you let go, and you offer love and support.  I am doing no different.

But the sphere... many talked about my sphere of influence.  I was told it will never be big enough.  I could never reach enough people to make a difference.  (And I am taking this a step further...) why even try?  Why should I even attempt when I can personally only reach hundreds of people in a country where there are over 300 million and in a world where there are over seven billion people?

Because this is why...  she is why.  How could I teach Lilah that she is big enough if I don't even feel that I am?  If I go through life, "How many people can I reach, why should I even try?"  What kind of message is that sending her?  You don't have to be big to do big things.  I will teach her that you can be big if you believe in yourself and you never give up on your dreams.   I will teach her this by showing her this.  I will be big enough.

She's Big Enough For Me

I hold you in my arms cooing and goo-gooing as others pass us by
"How old is she? She's so little," they say in the blink of an eye.

"Yes, she is my little one."  But I wish that they could see
The love and joy behind those eyes... "She's big enough for me."

Fast forward a few years and she's running round and round
with all the other kiddos playing at the school playground.

"She can't play... she's too small," the children all agree.
Her brother stands up to the crowd, "She's big enough for me."

The bus lets off, the kids file in, she enters the sixth grade...
The looks, the stares... she leaves everyone a little bit dismayed.

A girl sits next to her in class, a friend could she be?
She pays no attention to the others, "She's big enough for me."

Cheer tryouts have begun; she attempts to make the team.
The nay-sayers have come out-- ready to crush her dream.

The coach watches her perform and cheer so effortlessly.
He tells her she's made the squad, "She's big enough for me."

Scholarships and SAT's and applications to send in.
She writes essays about her life-- but which college to attend?

The admissions receives her application with her biography.
They love it, they love her, "She's big enough for me."

She finds her mission and stands behind it one-hundred and ten percent
She speaks to many and then to thousands at each and every event.

She's a teacher, a fighter, and a lover all to the -nth degree 
And then they all stand up and say, "She's big enough for me."

He caught her eye and sheepishly asked for her on a date
Who would have thought that silly glance would find her a soulmate?

He asked her father for her hand and got on bended knee
"I want to spend my life with you... you're big enough for me."

And now a lifetime has gone by and she's sitting on her porch.
She looks up to heaven and thanks God for giving her the torch.

The lives she's touched, the love she's spread, the way she's lived so free...
Her heart is full, she's done His work... "I'm big enough for me."

And when it's time for heaven to open up the pearly gate,
She stands before and smiles already knowing of her fate.

He winks at her and hands over the shiny and golden key.
So proud of her is He, "She's big enough for me."

Learning to wave and say "dada"
Mounting all by himself is a big deal.

Enough hair to finally wear a clip.

One of our favorite places: the barn.

Saturday, June 22, 2013

"Midget"-- Let's talk about this.

Here I am as a parent so passionate about what I am about to write that my stomach is in knots, my palms balmy and my neck hairs standing straight out.  In other words, it might be necessary to take a deep breath and gain some courage to keep going... but that is exactly what I am going to do.  Because, that's all I know.


This word.  This word that I do not like.  This word that I wish didn't exist.  This word that causes pain,  creates insecurity and passes judgement.  This word, that less than one year ago today, never crossed my mind.  Fast forward time... it's in my mind and now I want it in yours.


Hear it again because I want you to know about this word.  I didn't know... I honestly did not know this word was a derogatory word (meaning... it is considered a slur, condescending, hurtful, negative in connotation).  I didn't know because my life experiences up until last October did not lead me to a place where I had learned about this word.  I didn't know.  That doesn't mean I was using this word freely or ever, but it certainly wasn't on the same list as the n-word to describe someone of African-American descent or the r-word to describe someone with intellectual disabilities.  


Listen.  Listen good and listen hard.  Add it to that list.  This word is just as offensive to people born with dwarfism as the other derogatory words named above are offensive to particular individuals.  And with that said, they should be offensive to all of us.  We know better than to say those words... and good for us for knowing better and putting an end to hate speech.  Thank God we can "spread the word to end the word."  Here's our word.  This word that I never thought about a short time ago.  Let me tell you... it's on my mind.  Is it on yours yet?


People see me out and about with Lilah and now they are starting to ask questions about her littleness.  And, it is interesting to me that people want to know why.  Why is she so little?  And the truth is... I would want to know too if I were them.  Curiosity is a natural instinct that I understand.  I too am very curious in nature.  And I see nothing wrong with being curious and asking questions with the intention  to learn.  I welcome that.  So much.  And so...here is the "why" referring to this word: (besides the fact that it's derived from midge... a small-blood sucking insect,  and if that isn't rude enough) back a couple of hundred years ago it started out describing proportionately short-statured individuals.  It wasn't considered negative then.  That changed with society when those of short-stature were ridiculed for their size and put on public display with the intention of utter humiliation.  On purpose, public humiliation... for how they were born.  Ouch.  That happened.  And Thank God I am a mama in 2013 and not then, because the good Lord knows I would have gone ballistic on the townspeople and stoned them all to death if that were my baby up there.  Just sayin'.  So technically, what should a person born with dwarfism be referred to as?  Generally speaking I think Lilah would like to be referred to as... Lilah.  But I know there are times, especially when answering those questions that I do need to use terminology to talk about Lilah's diagnosis.  (I will just add that individuals in the Little People community feel differently about these various words...some like more than others... we are all still learning what's comfortable for each of us.)  But I will say, it is considered politically correct to use the words dwarf, little person, person of short-stature and person with dwarfism.


Uggghhhhh, that word.  I hear it, I've heard it, I did nothing... I learned something last week.  Something important about being on the sidelines versus being in the game.  My husband asked me if I had heard about the controversy surrounding Cafe Press this past week.  (Click on Cafe Press to hear the whole story but in short, this company was creating products i.e. hats, coffee mugs, apparel... with slogans such as "Midgets were put on this planet for our amusement. Use them as you will.")  I told him I had, but that I am filling my mind with positivity and that I was choosing not to focus on the negative.  He was surprised at my answer and he said that it was a big victory for short-statured people (and for everyone) when the company decided to remove all these degrading products.  Yes, if others acted like me and sat on the sidelines and did nothing... who knows who could have been hurt, influenced and desensitized by the use of this word?  Thank God others were not like me and Thank God someone or someones did something.  Sitting on the sidelines is helping no one.  I learned this last week.  I am now in the game ready to play.


Uh-huh... I have to address this word.  And I was thinking about this when I was watching ESPN with my husband a few weeks ago.  They were featuring a story about a man whose daughter had Down Syndrome.  He ran marathons with her and pushed this beautiful five year old every mile of every race.  When he was interviewed, they asked him about her.  He said lots of things that "hit" him but it was his love for her that "hit home" the most.  And then this... he said, "My biggest fear in life is that she is going to be called a retard."  He cried.  My heart broke into little pieces and I cried.  I thought about his statement.  A lot.  And I wondered if I shared the same fear... and after much thought, I realized... I don't.  I look at it like this... I will never be able to control what people say.  My daughter will most likely hear this word in her lifetime.  To her face.  On purpose.  It could happen.  My biggest fear is not that it could happen, it's that I have not prepared her for dealing with how to react.  That's my job as a parent.  But, it is also my job to educate and meet ignorances (intentional and unintentional) head on with knowledge.


I am telling you in case you didn't already know about this word.  And if you didn't, it's ok. Really.  This is not me angry, not me blaming, not me pointing fingers, not me judging.  No.  And as a former teacher, you only know what you have been taught... so this is me teaching.  Now, this is me begging... go and be a teacher too.  If you know me, if you have read our story, if you have a place in your heart for my daughter and for her future, your future, your kids' future, the world's future... teach about this word.  I am a big believer that people are generally good.  And in my experience with Lilah, people are great.  Just knowing you are taking time to read this already tells me about your heart.  Thank you.  Stand up against this word and other hate words.  Teach your children that there is no place for such words in our society-- I already know you are.  Lead.  Lead with intention and by example.  Lead on purpose for a purpose. 


Please.  This is one mama trying to reach out to others... Last week I wrote to average-height parents with a child born with dwarfism.  This week I am writing to the general public.  Perhaps I will be someone's only connection to dwarfism.  And I am hoping that's enough to be sensitive to this word.  Please hear me and help me... if this word is in your life-- remove it.  If it is on your Facebook page, if it is in a joke you tell, if you use it sarcastically to describe little things, if you are around someone who uses this word... do something about it.  


What I want from you... yeah you.  Time to get in the game.  I am asking something really simple from you that can/will make a difference.  Here are three things you can do to help me, pick one or do all three: 1. Repost this blog on your Facebook page.  I guarantee, someone watching your feed is average height and needs to hear this message.  They need to know.  Be an influence.  Help the movement. 2. Comment on this post either in the comments here on the blog or on the Facebook link where you saw this post and type in these words: I promise. And what that means to me is that you promise you will be a part of the solution and not a part of the problem. 3. When you hear this word... think about my babygirl.  She is seven months old.  Think about it hitting her ears.  Think about how it would make her feel.  And why?  Why does she ever need to hear this word and be made fun of for her physical appearance?  For the way God made her?  Stand up.  Get in the game.  


You heard it... it's in your mind.  Does it feel like I am name-calling, repeating it over and over like a bully would do?  Does it cut deeper and deeper each time your eyes graze over that word?  It's uncomfortable-- I'm glad.  That means... you are aware, you are sensitive, it doesn't feel good to keep hearing this word.  For any of us.  So I am taking it and crumpling it up and throwing it over my shoulder.  Who's with me?


Wednesday, June 12, 2013

Dear Friend...

It was me and Clay and my bump of a baby.  I was 33 weeks pregnant.  I had just finished my ultrasound and was waiting for the doctor to come back into the room.  Clay was watching the old school Mickey Mouse episodes on my phone.  You know, the ones that have some adult humor and aren't sooo PC.  The ones where I find myself giggling too.  Where Donald is extremely grumpy and Mickey Mouse talks in an even higher pitch.  And then the doctor walked in.  And I knew I was getting bad news by the way he walked past me and headed straight for his seat.  He looked me in the eye and said, "Your daughter has dwarfism."  And he set the Kleenex box on the counter right under my nose.

This is where my journey began.  With this news and any other news about your child, your parent, your friend... or even about you... the journey begins here.

This is where we all veer off in different directions.  How we handle the news and every day forward after that is what makes the story our own.

And with that said... here is my letter.  It is written for an average height mama and daddy who just found out their baby has dwarfism.  It is a letter I wish I had eight months ago.  It is a letter that we can all learn from.

Dear friend,

I know.  The word "dwarfism" is sitting in your throat like a lump that cannot be swallowed.  I know.  The sentence that informed you life would be different has been repeated over and over again in your mind like a broken record.  I know.  Your visions of the future are now blurry, vague and even scary.  I know.  You feel like you just got pushed into a new world that is very different from your own.  I know.  You fear judgement.  You fear ridicule.  You fear different.  I promise, I know.

This is what I will tell you... take a deep breath.  Like a really, really deep breath where you get all that extra air out of your lungs with a 10 second exhale.  Let yourself feel what you need to feel.  Grieve the baby that you imagined if you need to.  Cry and sob and cry some more.  And then repeat after me, "Everything is going to be ok."  Say this often.  Say it out loud.  Say it into the mirror.  Say it to your spouse.  Say it enough until you start to believe it.  Because... everything really is going to be ok.  I promise.

I understand because I was in your shoes.  I am an average height mama married to an average height man with an average height two year-old.  The word "dwarfism" wasn't even on my radar.  Until, I received the news at 33 weeks pregnant, that my baby girl would be born with achondroplasia.  And I was sad.  I was worried.  I was scared.  I understand because I was in your shoes.

And those feelings are natural... and expected.  And receiving news that your baby will be different is hard. 

But, I want to tell you something.  Something I figured out pretty quickly... hard doesn't always mean bad.  I knew this would be a journey for our family.  I knew it would change us and force us to open our minds.  I knew it would cause us to take a good look in the mirror and do some real soul searching.  No, those things aren't bad... just hard.  But isn't anything worth attaining require some sweat and tears?  Hmmmm... yes, I believe that to be true.

What I know now that I didn't know then: this journey would be the best thing that has ever happened to us.  To me.  To our family.  I allowed this journey to change me... to be better... to teach and lead by example... to make a difference... and I now consider myself one of the lucky ones.  It's kind of like that free "go to the head of the line" pass or the shortcut through the jolly jungle (or whatever it's called) in Candyland.  Well in this case, you get the shortcut to happiness if you allow yourself to understand how truly lucky and blessed you are.  And I will tell you something my doctor told me on the day he told me the news... "In a year from now, you will wish nothing is different." Trust me, when I first heard him say that I had a jaw-dropping, "What?!?" look on my face.  I thought, "Why would I ever think that?"  Well, I think it.  And I am hoping you do too.

I remember the questions... so many questions.  I remember googling.  And it was too much information, too difficult to read and sort through it and make sense of it all.  It was overwhelming.  Just know this... yes there are some increased risks with each type of dwarfism.  Choose an awesome doctor and an even better geneticist and come with your questions in hand.  And repeat, "Everything is going to be ok."  And if you do get overwhelmed... take a step back and just focus on one day at a time.    Keep your thoughts positive and the rest will follow.

Now when I think of my daughter, I think of her personality above anything else.  Yes, she is tiny.  Strangers kindly remind me this everyday and I smile and secretly thank God one more time for making her the way He wanted her.  But her tininess is just one of the many words used to describe her.  She is spunky.  She is determined.  She is smiley.  She is a mover and a shaker and I already know, she is going to do big things.  I have never seen so much ambition to do more, see more, be more in a seven-month old baby.  She loves life and I love that about her.

And so, my friend... do not be afraid or scared of your bright future.  You will come to see that different is so beautiful.  For if you had my perspective of time and a little bit of experience... you too would see that things are just as they should be.  And life is oh so sweet.  Your baby may be little... but never underestimate little.  Now, when I see a tiny little ant carrying 50 times his own weight... I get it.  You don't have to be big to live big.  Please teach this to your child.  To your family.  To your community.

Lastly, congratulations on your new baby (or toddler or however old your child may be).  Take advantage of this journey and take time at every step to really get the most out of each lesson, each moment, each opportunity to grow in the depths of your character.  And when you stumble, repeat, "Everything is going to be ok."  But really, just between us... it is going to be way better than ok.  It is going to be incredible.