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Thursday, August 7, 2014

Addressing Concerns...

For the majority of you that cheer us on, take part in our advocacy and read our blog posts... THANK YOU!  You don't even know how important you all are.  I am working on a new system to help new parents of a little person and to be able to better serve you better but I want you to know... I read every comment, every e-mail, every message.  I am trying to figure out how to respond to them all!  But, it matters and I am always blown away at the time people take to write! You guys are awesome.

For the few of you that have concerns with our advocacy, sharing our story, our blog and everything else in between... perhaps I can shed a little more light into our decisions and you can try my shoes on for a minute (very few of you actually know what it is really like and for my fellow mamas to a little person... you guys are my rocks--love you) and see where I am coming from.

I will say... life is hard.  No one is perfect.  As mamas, I think we are each trying to navigate this craziness of life the best way we know how holding onto our beliefs and praying at the end of the day that we have another day to try it all over again.  My hope is that we can lift each other up and not tear each other down.

With that said, I will also say... kindness is always welcome... we are constantly learning and open to learning over here.  We will take every concern and mull it over with each and revisit our mission and make sure we are spreading kindness, love and awareness in the right ways.  At the end of the day, we make sure that we are in line with our Christian views, helping others and doing what is best for our family.  And sometimes, we can just agree to disagree.

Here are some concerns we would like to address:

Concern #1: What if Lilah reads your blog someday?

Well, I sure hope she does.  My blog is a love story.  I think it demonstrates how worried we were for her, how much we have changed, how much we absolutely and unconditionally love her exactly the way she is.  I hope it will show her that in this family it is ok to be real, to not have to be perfect.  It's ok if we make mistakes, change our point-of-view, learn and grow.  I hope she will learn that in this family we say, "I'm sorry." That we are there for each other.  I hope she is encouraged by all the good that has come from sharing our story.  I hope she see how many people have supported us along the way.

Concern #2: Aren't you worried about giving out Lilah's name and photo?

No.  I am not.  Why not?  Because with that mentality, where do you draw the line?  Do I worry that my kids are going to get hit by a car?  Sure.  Do I worry that they are going to drown in the lake?  Sure.  That doesn't mean I don't let them go outside or swim in the lake.  We choose not to live our life in fear of things that could possibly happen.  Does it mean that I let my kids outside without my supervision or in the lake without life jackets?  No!  Of course, I take precautions but it is because of these precautions that I feel comfortable living my life out loud and on purpose.  We choose to see the good in people... probably because we have witnessed so many strangers that have become friends along the way. Regarding the cards... this is not a propaganda situation... we are not at the street corner passing these out to anyone!  And I understand that they could potentially get into the hands of anyone... but there is no address or phone number attached to the card or any website on the card.  We are giving these cards to people in our community as to learn about their littlest citizen so when these families see her out and about, they can say, "There's Lilah!" We are taking the curiosity out of the situation in hopes that she is loved here for who she is and can be comfortable where she lives.  In doing this, we love that the advocacy is spreading beyond our town and into other states and countries too.  We love sharing the message of love.

Concern #3: You don't owe it to anyone to tell them about your story.  What if your kids hear you talking about it?

I absolutely agree, I don't owe anyone.  But if we all had that attitude, what would our world look like?  Avoiding important discussions and learning opportunities because we don't owe anybody anything?  Personally, because I am a Christian and I do believe that all that has happened in our lives is a direct result of Him and His faithfulness to us, I just can't approach life that way.  It doesn't mean that we are walking around sharing our story to anyone that will listen!  We are sharing our story to those that want to learn more.  You have to understand how many people are touched by her life in just a two-hour time period.  At the zoo last week it was over 30 people.  I have learned how to field questions and when to talk more in depth and when to just say, "Thank you," and move on.  But interaction is positive and kind and our hope is to change perceptions one-by-one.  My children hearing the love behind our story will understand how different is beautiful and we are not ashamed of our story.  They will be able to field questions and lovingly talk to people as well.

Concern #4: Aren't you worried about who your story will reach?

Let me tell you firsthand who our story is reaching... almost everyday someone is reaching out to me because something on the blog was helpful, they themselves are in need of some counseling or they have changed their perception of little people.  AND... one child became diagnosed after the mama thought about how much their child looked like Lilah on Instagram.  These are not little things.  These are BIG-changing-the-world-things.  That is why this advocacy is so important.  Did you know I was once counseling this one mama... and she was so concerned about her son's diagnosis and all she wanted to do was to reverse it?  I talked to her over and over about how to cope but the last thing she said to me was, "I just cannot accept it."  My heart was and still is broken over that.  I want to be there for mamas that need help so they do know everything is going to be ok.  Minds can be changed.  We can not only accept this fate, we can completely love it.

Thank you all again!  XOXO

Monday, August 4, 2014

FAQ's and Questions People Are Too Afraid To Ask

I wish you could go somewhere with us.  Anywhere... it wouldn't matter.  And if you did... it would occur to you how MUCH attention Lilah gets in public in the form of stares, smiles, second looks and questions.  Perhaps you would stop and think, "Wow, this takes some getting use to."

You might get angry at the stares and the sideways glances.  The comments that begin with a, "How old is she?" To a, "Oh! I thought she was 9 months old and walking!" And then an added, "She sure is little!" You might wonder why people feel the need to tell you about your own daughter.

You might get annoyed with the people that stop you and want to see her.  That tell you she is, "The most adorable little girl I have ever seen." And in the cases when you hear roaring laughter and you turn around with a little panic on the brain wondering if perhaps she is the root cause of the laughing.  And you turn around to realize she is... but for all the silly faces she is making at the next table.

You might think it is so sweet how much positive attention she gets and how the word "cute" is said over and over by everyone.  And then you realize she will always be told this and at some point in her life, she will probably come to hate the word "cute" and want to be seen as something else.

It might occur to you that for you... this attention is temporary and you get to leave her side and go on and be out in public without the attention... but for her... she will always have dwarfism and never know what it is like to go somewhere without it.

And when you really add up all of the attention and sit back and think about it... you would realize that 95% of people are genuinely curious... with no ill-intentions.  That is what I have come to learn.

And so, I try to treat every encounter as an opportunity to share our story and educate about dwarfism.  Even when I am in a hurry.  Even when I have already talked about it ten times that day.  Even when I don't feel like it.  Even when people are rude.  (Aren't those the times when it is needed the most?) If they are left with one sentiment, I want it to be heartfelt, sincere and meaningful.  These adjectives are words that penetrate deep down into the heart.  And when they get there they start stirring things up... for the good.  That is where new attitudes, outlooks and perspectives are born.  That promotes change.  We need change.

My challenge: how do I get to someone's heart in a matter of seconds?  I don't.  I can't.  

So this was my solution: create business cards for Lilah.  Then I get more than a few seconds...  and that way, when someone is interested, curious, or in love with her... they can learn more.  I thought long and hard about what to leave with people that would fit on the size of a small card.  What did I want people to know?  I decided that I wanted them to know Lilah for herself.  Her whole self.  Her whole story.  Her daily life.  Dwarfism doesn't define her. And they would soon realize that... and at the same time... by knowing her... they would indeed be learning about dwarfism all the while.

It looks like this...



I purposely kept it cryptic... haven't you heard? Curiosity kills the cat.  Not knowing exactly what her story is will make people want to learn more.

And I have been thinking... I get asked a lot of the same questions over and over... and then sometimes I don't get questions that perhaps crossed the mind?  So I have compiled a list of: 

Frequently Asked Questions and The Questions People Are Too Afraid to Ask:

1. Does dwarfism run in your family? If you have another child, will it be more likely that child could be born with dwarfism? (And... if they have not met my son...) Is your son a little person too? (These are the number one questions I get asked all the time in addition to... how & when did you find out?  Click here to read more about that.)

The answers to these questions are simple.  No, no and no. Achondroplasia occurs in approximately 1 in 25,000 to 40,000.  80% of these cases (meaning... the other 20% would be born to little people... yes they have a 50% of having children that are little) occur randomly by a mutation of a specific gene during conception.  My chances of this occurring with another child are THE SAME AS YOURS.  This always surprises people.  And no, my son is not a little person (and it would be perfectly fine with us if he was)... but, I do not know of any situation in the history of forever (please correct me if I am wrong) outside of twins where there have been two children that have been born with achondroplasia to average-height parents.  (I got asked the "son" question twice by a doctor and a nurse last week and I was so surprised at their lack of knowledge about dwarfism.  BUT, I have to remind myself that it is very rare and many medical professionals would not have experience in this area... again, another chance to educate.)

2.  What are the appropriate terms to use in talking about a person with dwarfism?

The PC terms are dwarf, little person (sometimes referred to as LP), person of short stature and person born with dwarfism.  I personally do not like the term dwarf because I don't think it conjures up positive images in the average American's eyes and I don't think it is fair.  I don't think that because you were born with a mutated chromosome it should make you a _________ . I think in our lifetime that will also be an unacceptable term.  The word 'midget' is on the National List of Derogatory Words and is considered highly offensive.  Not just to describe a little person but in any fashion of the word.  Average-height is the term used for referring to a person without dwarfism as opposed to normal-height or regular-height. I should mention that personally, I am not easily offended and as a rule of thumb, I don't want people to be on eggshells around me worrying about saying something offensive.  I am understanding and this is a good guideline.  We all make mistakes and just being aware of what is appropriate is helpful.

3. How tall will Lilah be? Where does she fall on the growth charts? What size clothing does she wear?

I don't know exactly.  She will most likely be between 3.5 ' and 4.5' based on averages.  She has her own set of growth charts based on individuals with achondroplasia and she is not compared to an average-height child's growth chart.  Lilah is current in size 3-6 months clothing and can sometimes wear 6-9 month clothing.  In my opinion, she is about the size of a 6-month old.  She is less than 20 pounds.

4. Is Lilah behind on her milestones? What have her biggest challenges been so far? What is her next potential surgery?

No.  She was able to walk at 14 months and is now running.  Achondroplasia only affects the physical body and not her intelligence.  She is saying lots of words and phrases, loves to dance and has a silly, fun-loving personality.  Her biggest challenge (and ours) was her sleep apnea that we discovered around 6 weeks old.  She was diagnosed with obstructive sleep apnea and had to wear electrodes 24/7 that we plugged into a monitor when she was sleeping.  The alarm would trigger once she stopped breathing for 20 seconds.  She was on this monitor til about 8 months old.  To say this time period was challenging would be an understatement.  Sometimes the alarm was quiet and other times it would go off 15 times a day/night.  It is something she has outgrown to an extent and she just had her tonsils and adenoids removed to help improve this as well. Her next potential surgery is around the age of kindergarten where she will most likely have to have surgery to straighten her legs.

5. Do you watch The Little Couple and Little People Big World?

No... haven't seen it.  Although I have heard really good things about The Little Couple and I am thrilled they are representing for dwarfism and educating along the way.  (The man and women featured in this show have a type of dwarfism called Spondyloepiphyseal Dysplasia.  Lilah was born with the most common type of dwarfism called Achondroplasia.  This is also what the woman in Little People Big World was born with.)

6. Is part of you so glad that she gets to stay little when as mamas all we want is for time to slow down and for our babies to stay little?  Is that the silver lining to this all?

I am amazed by her littleness... the way her body moves and bends differently; the way she needs extra support still when I hold her in my arms; the way she can stand up without using her hands; the way she can climb onto things using her upper body strength that seem way too high; the way she falls hard and often, flat on her face... but is never hurt by it; the way she still feels so light in my arms; the way her arm folds tan and leave little white stripes in her creases.  It all amazes me really.  She is so unique, so special and I just couldn't love her anymore.  I love her the way she is.  But, back to the question that I have been avoiding... to say yes to this would be indeed inaccurate because it would not just be a yes. It would need a large asterisk with that yes to show that it is not that simple.  In our world, I am constantly reminded of her littleness when she is with others her age and when I see clothing in the size that is consistent with her age let alone people that remind me of it several times a day.  I love her snuggles and cuddles and they way she fits in my arm nook.  But it is not exactly like slowing down time and getting to expand on this baby stage.  It is different than that.  What is the silver lining? The change in us, being able to become advocates, the constant learning and growing, all the friendships and life-long bonds that have been formed, and just... her. We wouldn't change anything.

7. How do you feel about films that feature little people such as The Wizard of OZSnow White and the Seven Dwarves and Game of Thrones?

I have never seen Game of Thrones... I don't have an opinion about it.  People in the little people community seem happy with Peter Dinklage and the awareness he brings to dwarfism in a positive light.  I personally don't know.  I think the Wizard of OZ and Snow White and the Seven Dwarves and any other Sci-fi or blockbuster (The Wolf on Wall Street) have done a HUGE disservice to little people with regards of how they are viewed in society.  I cannot tell you how ridiculous it is as a mother of a child born with dwarfism to witness such a mockery to people who are born with a physical disability.  Unless you are in my situation, this may not hit so close to home.  I get that because before Lilah's diagnosis, these movies didn't bother me.  But now I have more awareness for equal treatment of all people and it is so sad on many levels.  The society that enjoys this type of humor, the film makers that allow it, the little people that take these roles.  All of it just adds to the generalizations that little people are entertainers and should be ridiculed for their physical appearance.  Dwarfism is rare and these experiences may be a person's only exposure to dwarfism.  Because of this stereotyping... it is challenging in our advocacy to change minds and break down these misconceptions.

8. What work are you trying to do with your advocacy?  Why is it so important?

Being an advocate is a choice.  It is not an easy position, but we made the decision in a matter of hours after the diagnosis that we were going to be leaders in advocacy in dwarfism and join those who were already paving the way. It meant that we would be very open and honest about our story and journey.  With this, it means we are always subjected to opinions.  Some opinions may clash from our own and lead to criticism.  This happens.  To be expected... it is a part of it that you have to accept as an advocate.  If it was incredibly easy and received well 100% of the time, there wouldn't be a huge need for it.  But there is a HUGE need for it.  Our society has been misinformed about little people over and over in the media and specifically from Hollywood.  There is a "mysterious" shadow that follows little people around to this day. We would like to take the mystery out of dwarfism and present it as it really is.  I want to reach others through love.  Those that know Lilah, are familiar with Lilah and love Lilah are also going to be advocates for the entire little people community.  We are creating an advocate army that is going to go out there and stand up for little people when the need arises, educate, preach different is beautiful and live out their lives that way.  

9. Would you say that you live a "normal" life?

Personally, I would be insulted by the thought of living a "normal" life. Yuck.  No, I want to live an extraordinary life thank you. Normal is for the birds... we do not try to do normal, fit into normal and live normal.  We are rule-benders, adventurers, blazing our own path kind of people.  Has dwarfism impacted our life and made a huge impact on our lives? Yes... in the fact that we now have an advocacy component and we talk to everyone.  Other than that... not really.  We live our lives as we would have otherwise and Lilah's dwarfism doesn't hold us back at all.  In fact, I would say it propels us forward.

10. (Only my best friend has asked me this... and she has fair game to always ask me anything! But it made me think that perhaps others might want to know too...) You were very sad when you first found out and now you are always very positive... do you ever still get sad?

Yes.  Never for long.  But, yes.  Sometimes, I have sad moments when something hits me... usually when I realize something that Lilah will never be able to do... like reach to the top shelf of the grocery store for a can of beans. Or reach the paper towel dispenser in the public restroom.  Sometimes it is when I see young girls in their teen years that look like me.  They are running around with all of their friends and sometimes I try to picture Lilah there.  And it can be hard.  But, I always remind myself... we are not there yet.  We will get there.  It will be ok.  I worry about bullies and comments and stereotypes.  But I try to push that worry off until it is really needed.  Right now, there is no need to worry about that.  I am fielding all negativity because the kids are too young to understand and I have thick skin.  Mostly, I just feel so blessed and loved and honored knowing that God entrusted me with the lives of these two precious children.  That is what matters.  I focus on them being here now.  And I couldn't love them anymore. I also rely on my average-height mama-friends with a child with dwarfism and my LP mentors.  They are an incredible support system that play a huge role in my life.

A few of my faves from this summer...











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!


Thursday, April 3, 2014

The Journey... and All of its Parts


This is a story.  A metaphorical story about a journey.  I purposefully wrote this in second-person so you could easily step right into my shoes and allow yourself to feel this journey as if it were yours.  There are lots of analogies that I could only explain this way... to give you my perspective.  Every feeling, every turning point, every step along the way has made its way into this story.  I had to include it all... so it was truly authentic.  Right or wrong... this is how I felt at the time....

I have referred to this journey many times in my writings... but this is the complete story of that journey.

Part One: Welcome to God's Genetic Stadium: Coming to terms with the 1:25,000-40,000 odds and the initial shock of the news of a dwarfism diagnosis.

There you are, sitting by your girlfriends-- all giddy just like you were the moment you found out your exciting news.  That smile on your face is the exact same smile that everyone around you has as well.  You are sitting in the bleachers of Fenway Park, you and 36,000 other mamas-to-be.  Except it's not Fenway Park... it's God's Genetic Stadium and you are about to get the life-changing news that you have been waiting for since you found out you were expecting.

You take a deep breath and think about the moments leading up to this... a first pregnancy after months of "trying" that ended in a loss after seven weeks.  The heartbreak, the disappointment, the worry that took up permanent residency in your heart as a result.  A second pregnancy that took a complicated turn and resulted in high-risk fetal monitoring twice a week for eight weeks.  But... a healthy boy was born.  Praise the Lord!  And now he will be a big brother with this pregnancy... and with it, so much hope.

You open your folder in your lap and you hear God's voice.  You look at your girlfriends and you start squirming in your seat-- here we go!  The first page says "Gender" and God announces that 17,456 of you will have a girl and 17,297 of you will have a boy.  1,200 of you are having twins and 47 of you are having triplets.  You wait to see what appears on your page in front of you.  GIRL!  You are having a girl!!  Excitement runs through your veins and confirms your intuition.  A girl.  You quickly show your page to your girlfriends and you see theirs and you cheer.  WooHoo!!!!

Next page... hair color.  You hear God announce how many of you will have brown haired babies, blonde haired babies or red haired babies.  And then on to eye color.  With each reveal, you get more and more excited!  This little blonde-haired, blue-eyed girl is mine!  You can picture her and you cannot wait to swing her in your arms and dance.  You feel overjoyed.

More genetic traits are revealed and with each one there is more enthusiasm as your little one starts to become more and more real.  And you giggle each time when you realize the apple never falls far from the tree when your daughter is handed down your messiness and your husband's charm.  The stadium is noisy with chatter among the mamas-to-be as they can't help but to share each and every genetic trait with their friends.  And then God speaks the words that silenced the stadium in one breath... And since you weren't paying attention you flip to the next page and it is titled 'Birth Defects.'

You gasp.  Birth defects?  Could this really be a page in my baby's folder?  The thought was one that was always kept at a distance.  You think about how you have escaped this before... could you again?  You look around and every mama-to-be has a somber face, their eyes closed and head bent down.

Each one of them is saying the same thing over and over under their breath, "Please don't pick me, please don't pick me."

God continues... "1,000 of you will have a baby born with a birth defect.  If your page remains blank, you are free to leave the stadium." You look at your page hard with eyes that could burn a hole right through it.  And something appears... the word, "yes."  You stare at the word.  You are sure it is there but your head is screaming, "NOOOOOO!" so loudly that you cannot process the thought.  Your heart sinks.  Could this really be happening?  Your eyes well up with tears and you look up at your girlfriends and they begin to tear up as well.  For you.  And they put their hand on your shoulder as they quietly exit the stadium without a sound.  But not all of them left.  Two girlfriends were still there among the 1,000 other mamas-to-be sitting scattered throughout the stadium with shock and fear spread across their face.

God speaks, "360 of you will have a baby born with Down Syndrome..." You look down and nothing appears on the page.  You look around and see another group of girls get up and leave the stadium.  And you hear the list that God speaks, "240... heart defect, 120... cerebral palsy, 45... cleft palate, 36... spina bifida, and so on... But your page remains blank.  You hear sobs and screams and can feel the shock and fear of everyone around you.  Your heart is pounding through your chest and the pressure makes it almost impossible to breathe.  Don't we all just want the best for our baby?  Does this guarantee a harder road?  The picture of the little girl you imagined just a short moment ago is miles away.  She is faded, blurry and hard to see.  Is she even still there at all?  You look up and the stadium looks almost empty.  In fact there are only 181 girls out of the 36,000 thousand that sat there only a short time ago.  God continues... "One of you will have a baby born with dwarfism."  And before you could look down on your paper to see the word... God looks right at you.  "Me?" You say the word out loud.  "Dwarfism?"  You think it may be the first time the word has ever passed your lips.  "But there must be some sort of mistake," you say.  "I am 5' 8" and my husband is 5' 11." This doesn't make any sense."  God smiles and it seems as if He almost winked at you.  And you slowly get up and leave the stadium as you hear God hand out the last birth defect... stillborn.

Part 2: Moving Mountains: Dealing with the diagnosis, pivotal point in moving forward and the power of opening your mind

You leave the stadium and you feel something heavy attached to your foot.  You look down and see the word DWARFISM made of cast iron hooked by a chain and cuffed to your ankle.  You shudder and think, "This is not my word."  You shake your foot trying to free yourself and you trip right over it.  You can feel yourself falling... in fact, you have fallen right off the edge of a cliff-- thirty feet down into a ravine.  You feel the sting of the fall but you immediately jump to your feet and you claw at the earth trying to get back up on the cliff.  But, this word will not leave your side.  It's weight won't allow you to climb.  You try to detach yourself from it.  You look desperately for a key but you realize there are none.  You call for help repeatedly but there is no one there.  You start scanning the ravine's edge and think of any and every way you can make it back on the cliff.

You beg and plead with God that He helps you find a way to get up there, to remove this word.  Because... there was before this word.  There was your normal.  There was your comfort.  There led you to your life the way you imagined it.  That little girl you pictured in your head was up there waiting for you.  She needed you or actually, you needed her.  But, it was silent.  After hours of trying to get back, you realize that you can't.  The pain now has set in and you begin to feel the sharpness of what has happened.  You feel broken.  Shattered.  You fall back down to the ground in a heap and you lose yourself to the ugliest cry you have ever had.  Your body is shaking because now you understand... you have to leave your normal up there... you have to leave her, the girl you imagined, up there.  You have to say good-bye to what you thought you always wanted.

It has been hours, days and even longer and you are slowly beginning to understand that this word will now always be a part of your life.  You fall asleep only to wake back up scared and startled, "Where am I? What has happened?" And then you feel the weight on your foot and you are hit in the face with the news again and with that the realization of where you are and the pain starts all over.

"God," you cry out... "Why me?  Why her? Why us?"  He appears and looks at you with loving eyes and says, "Because... I have chosen you to be her mama.  I have chosen her to be your daughter.  I know this is not what you expected, but it is a part of my master plan.  She is perfect in my eyes and I have made her to be so, for I never make mistakes."  And you tell Him, "I don't understand."  And He says, "Have faith my child."  And with that He was gone.  "He chose me?  Why?" You wonder what God saw in you that made Him think you could handle this.  You were weak.  You were afraid.  You were lost. And the wind begins to whisper all around you... "With man this is impossible. But with God, all things are possible." (Matthew 19:26)  You shake it out of your ears unable to absorb the thought.

You stand up and bear weight on your uneasy legs.  You look up at the cliff for the last time and you close your eyes.  Behind you is the unknown.  You are so completely afraid of what you don't know.

You take a deep breath and for the first time, you turn around, open your eyes and take a good look at what lies before you.

It's a jungle.  It is thick and deep and scary.  You have never been in a jungle like this and you wished you had been more prepared to survive in it.  You see several slim paths in front of you.  You stare at them for what seems like an eternity.  Where to go?  Which path to take?

This marks the beginning of your new journey-- making the decision to take that first step forward.    You hear your head start to analyze each path... you feel your heart pointing to one and you just start walking.  Your heart knows the way.  You pick up your word and take a step.  And then you keep going.

But the path is rigorous to start.  It is the farthest thing from easy.  Carrying around the extra wight of your word is grueling.  You are startled by the littlest noises.  The thickness of the jungle is overwhelming... you often close your eyes, regroup and focus on what is in front of you.  And then you realize, no one knows you are here.  You start by contacting your spouse and you feel the fall all over again.  You are now the giver of this word and you just attached it to your spouse's foot.  And then on to your family and friends.  You fall over and over repeating the same story again and again.  You become numb to the reactions, you answer the questions of why you are here with the little knowledge you have.  The heaviness of your heart and the tears in your eyes make it difficult to see the path before you.  And it dips and turns and jolts and narrows.  Monsters rear their ugly heads at you in the name of doubt, worry and uncertainty.  You are jumping and reaching and stretching and falling... all the while dragging your word behind you.

And then you get to a door.  It is labeled YOUR MIND.  You realize the only way through the path is to go beyond that door.  But it is a rusty door with several different combination locks... some big, some bulky, some really old... all ugly.  These are the very things that you have spent your lifetime harboring and the very things that have been holding you back-- all this time.

You feel defeated before you even start.  "The world is telling me how to feel about everything... what I do, what I should look like, how to treat others, what's important..." Your words are spoken to no one.  But the truth behind the statement sets in... And you hear the sweetest voice to your ears imaginable.  It's your mama, the woman with the kindest spirit you have ever met. "Sweetie," she says... "Stop listening to the world and start listening to your heart.  You will come to see what is important and you will find yourself along the way."  You plead with her, "But mama... what if my heart is leading me in a different direction than that of the world?"  And she says, "Follow it.  Your heart will not mislead you.  Go your own way, seek good and always be kind.  And remember... 'Today is the day the Lord hath made.  Rejoice and be glad.' (Psalm 118:24)"

You hold the first lock in your hand.  It is labeled "judgement." You go back through your memory and pull up anything that registers with this word... the wind gets knocked out of you.  Painful memories come flooding in... ones where you were judged.  Ones where you judged.  You let go... you allow yourself to feel-- really feel.  The hurt is so real it's like you could reach out and touch it.  And the foundations to your character start to crack and soon enough... your walls come crashing down...  You forgive others, you forgive yourself.  Your heart begins to bleed leaving gaping holes behind.  And the lock snaps off the door.

You go through each lock... peeling back the layers to every aspect of your soul figuring out that correct combination... and with each moment of clarity, another lock becomes free.  After many days...  you look at all the locks sitting opened next to you: failure, image, self-worth, disappointment, comparison and influence.

And finally... your last lock.  The only thing between you and that door.  Fear.  You close your eyes and you let your worse-case-scenario happen.  And like a dangerous wave rushing over your body, you imagine your daughter... gone.  Gone forever.  The daggers dig deep.  They cut you over and over.  And you feel shattered-- but not like before... this was nothing you have ever felt before.  Your heart cries out to your head and you realize... this is by far the worst pain you could experience.  Not a diagnosis, not complications, not different.  Gone.  Like the first baby... only seven weeks old.  Gone.  Like the babies of the 180 women you left behind in that stadium.  Gone.  Heart-wrenching, unexplainable.  Gone.

But, you were not one of those 180 women.  She is here... you have to find her.  But first, you have to find yourself.

That last lock crumbles and you begin to pull at the door.

Your mind opens.

You step through the door lugging your word behind you.  You look around.  It looks exactly the same as it did on the other side of the door.  But wait-- it sounds different.  You start to listen to the world around you.  But amazingly, you don't hear everything.  You have somehow mastered the ability to just hear the sounds that inspire you and lift you up.  You drink in these sounds like you have never had water before.  It was an all new thirst.  And you listen.  And you learn.

All of the sudden, the sun begins to shine brighter, the leaves begin to glisten, the flowers start to bloom, the path widens and starts to smooth.  You are looking at the world differently... and in every direction... all you see is beauty.  You keep seeking.  You keep listening. Your mind begins to bend in a way where compassion consumes your thoughts and love takes over.  With every new step comes empathy, understanding and encouragement.

Part 3: Support and Her Arrival: Creating that safety chain, a day at a time, finding mentors and meeting your daughter

You stop in your tracks.  You hear a sound... voices.  Sweet voices.  Familiar voices.  You walk faster, jog and now sprinting to the direction of the sounds with the clang of your word following you.  You stop.  And there before you is a village.  An entire village.  People are gathered in a circle.  The voices have stopped and you are being led by the hand to the center of the circle.

"We were waiting for you."  You look around... you see your spouse, your mom & dad, your siblings, your best friend, your college roommates, your neighbors, your high school pals, your cousins, your childhood friends, your teachers, your co-workers, your parents' friends, your acquaintances, your former bosses... your enemies.  One by one they stand. "I am here."  "I am here."  "I am here."  They each speak the same three words that mean more than a million words combined.  And with each promise, they grab the person's hand next to them.  And it begins to take shape.  The chain.  The safety chain of all those who love you, all of those who support you, all of those who are there.  The hot tears are streaming down your face as you realize you are not alone.  You never were alone.  You will never be alone.

Onward with a new spring in your step.  It feels like you are floating on air.  You glance behind you... they are following you!  You smile.  Thank you God.  Thank you for them.  You start gliding down the path and it hits you.  You look down.  Your word is gone.  The cuff, the chain... all gone.  You are bewildered... what does this mean?  Something shiny catches your eye... you move towards it wondering if your word was just temporarily hiding from you.  But, it's a mirror.  You move closer to the mirror uncertain at what you would see... it is you.  Or is it.........?  You don't recognize yourself... the person looking back at you is more confident, stronger and braver.  But it is you.  You are changing.  You are different.

"I chose you... because you needed her.  You needed this journey.  This was always your fate."  You are startled and quickly turn around.  You nod at God, this time understanding.  "But God," you say, "Where is my word?  Is it gone?" "No my child; it's not gone. It is written on your heart."  More tears... because you know He is right.  It will always be your word, but you have come to love this word because it is hers.  Because she is yours.

"God... is my journey ending?" you attempt to ask through your tears.  He says, "Your journey is never-ending.  In fact, you have just begun." And with that He was gone...

You look back in the mirror.  Yes, you seem different-- forever changed.  But you are confused because you know you are not where you want to be.  Where you need to be.  And then you think about God's words again... "never-ending."  You realize that you will never arrive at a place where you are done growing, done changing, done learning.  But, by allowing yourself to go on the journey... and continue on the journey, you are committing yourself to a life you can be proud of.

You step back on the path but not without a glance behind you first.  And you immediately do a double-take.  Yes, your safety chain is still behind you... but it has grown.  People from your town, friends of friends and even some strangers have joined in.  You cannot believe your eyes as you actually witness it growing in size.  Your smile beams and you know now more than ever how much you need them behind you.

You turn back around and start to follow the path once more.  But... you start to get anxious.  In the jungle you can only see a few feet in front of you.  You start thinking ahead... one year, five years kindergarten, ten years, teen years, graduation, twenty years, a wedding?  You decide to climb the nearest tree to take a better look at the future... you are worried about what lies ahead.  With each vertical step, you feel the panic start to rise inside of you.  By the time you reach the top and you peer way into the distance, you miss the last foothold and down you go all the way back to the ground.  You land in a heap.  One painful heap.

"It's better to take one step at a time... one day at a time.  Looking ahead will overwhelm you.  You will get there when you get there."  Who said that?  It's a mama-- just like you.  "Who are you?" you ask.  "Do I know you?  Why are you here?"  She says, "You don't know me.  But you will.  I was you... only five months ago."  You are confused..."What do you mean, you were me?" She points down..."Meet my daughter... she is seven months old."  And then you see her... the most beautiful little girl holding onto her mama's leg looking up at you with her big brown eyes.  She is shy and sweet and... perfect.  You fall in love with her immediately.  You reach down to hold her and your heart aches so much for your own daughter.  You wish so badly that you could hold her, know her, love on her.  Oh how lucky this mama is.  The little girl reaches up for you and you squeeze her so tight... "Wait..." I say.  But the mama interrupts me... "She was born with the same type of dwarfism that your daughter will be born with."  You look at her blankly... but... but...     

Words have escaped you.  You have a million questions.  A million thoughts.  But... all you saw was the motherly-daughter bond, love and happiness.  And it stopped you in your tracks.  Isn't that all you ever wanted?  Love?  Happiness?

Now, more than ever you become desperate for your daughter.  Oh just to see her face, just to touch her skin, just to squeeze her tightly and tell her how much you love her.  You think about your heart, gaping & bleeding.  You have to find her.  But where?  How?

You start to run down the path... your lungs begin to ache, your knees holding you steady.  You feel focused, you feel excited.  She is all you can think about...

You reach the edge of the jungle and burst right out into a meadow.  It is filled with wildflowers and songbirds and sunshine.  All things that you love.  This is where you would meet her... you were ready.

You sit down at a clearing and you wait.  And wait.  You start thinking about your journey from the beginning... oh how far you have come!  But the sting of those first memories are painful.  They will always be painful.  You have stirred them up and they float to the surface and your eyes spill over with tears.  Now you are sobbing... your head in your hands.  You start to feel something weighing heavily on your heart...but you can't place it.  "Guilt." You look up.  It's a woman.  Someone you have never met before... she walks towards you and you realize that she has dwarfism.  "I understand why you feel guilty.  But what you felt was real.  And it was necessary in your journey for you to get to where you are today."  You are still sobbing..."One day will she ever forgive me for the way I felt?  For being so sad?" The woman smiles.  "Yes.  Because your story is a love story with a happy ending.  It was always about your love for her." You look back up at the woman... You no longer see her dwarfism... You see compassion, wisdom and determination.  You see her for her.

You look to the skies and hold up your hands and cry out.  You pray.  You pray for your daughter.  You do not pray that she is born without dwarfism.  You pray to let His will be done.  You pray for strength.  You pray for guidance.  You tell Him you are grateful for choosing you to be her mama.  You tell Him you are grateful for the change in you.

And then you hear more cries.  You think they are coming from you when you realize they are hers.  Your daughter's.  You rush over to her and swoop her up in your arms.  In one single moment... the gaping holes in your heart are completely filled.  Even spilling out.  The fear is gone.  Only joy remains.

And with her in your arms... you dance.  You feel the sun on your face, the flowers underfoot and you hear the songbirds welcoming her.  But none of that matters.  She is all that matters.  And you dance.   

Part 4: Life as We Know It: How she is changing the world-- one person at a time

Those first moments of her life were indescribable.  The one thing I know for sure... God was there.  I have never been more sure of anything.  (Read Lilah's Birth Story to hear more.)

It is amazing how much we can learn in hindsight.  And in hindsight, I wish we could have skipped over all the pain and went straight to the joy.  And the joy--- oh the joy!! She is such a light in our lives.  We thank God for her everyday.  But, the reality is... this journey was so deep and meaningful and life-changing because we allowed ourselves to be real and to be human.  I really wouldn't-- couldn't change it for what we gained as a result.

What took place after her birth, I could have never imagined.  Lilah started to change the world.  I am aware that is a very bold statement.  What does it really mean to change the world?  To me it means this... she is changing minds about existing stereotypes, about persons with disabilities, about what it means to be different.  Changing minds can change hearts.  Changing hearts... that will lead to a better world.  She is doing that.

But, she is not alone... she joins an army of children and mamas and daddies and families that are diligently doing the same thing.  Educating, leading, living by example and loving.  We are proud to be a part of that army.  Our safety chain continues to grow and we continue this journey together... as a family.  Thank you for joining in this army as well.  Together, we will change the world.  One person at a time.  

This is our story.  We all have a story worth listening to.  Thank you for listening to ours.








Thursday, March 20, 2014

6 Mamas That Will Inspire You

I think the more we open our minds and our hearts... the more we become inspired.  I have never felt that fire in me as I have in the past year and a half.  But to get there, I have to strip it all down and start from the beginning.  I had to learn how to open my mind.  The process was grueling and lots of self-checks asking the real tough questions regarding "priorities, faith, character."  Now, I burn for so many things that have taken over my heart... my compassion is different.  It is altogether encompassing.  And I love to feel the heat of that fire.

In a world where we are bombarded by information, advice, stories, advertisements and the details of what everyone is doing at that given moment... it can be overwhelming.  And with social media literally at our fingertips... anything you want to fill your mind with is possible in a matter of seconds.  Social media can get a bad rep but for me it is this simple: it can be whatever you make it out to be.  And I want to inspire others.  But, what I have found is inspiration... everywhere.  And true friends.

I want to share some mamas with you that inspire me on a daily basis. And these are just a handful of women that inspire me... there are many more! Their stories are real and raw and moving. They have also had a few words change their lives.  They have been faced with difficult decisions. They have had heartbreaks... and they also have triumphs.  They are survivors and in my eyes... they are heroes.  The one thing they all have in common, they have found happiness and joy regardless of their situation.  


They have stepped out into the public eye to share their stories with all of us. That's not easy to do... and they do it to encourage, inspire and open minds. And I thank God for all of these women setting a wonderful example of poise, grace and faith.  Meet my friends...     

Heather



I want to start with this mama because she is in the middle of a fight.  She is fighting to raise money to take her son several states away to see a specialist that has agreed help her son.  Cooper was born with achondroplasia (like Lilah) and is currently measuring in the top 95% for head growth on the achondroplasia charts.  There is a legitimate concern for hydrocephalus (water on the brain) and the need to see this particular doctor is paramount.  She has set up a "go-fund-me" website where anyone can donate to help this cause. If you only read about one of these mamas (no! keep reading!), I wanted it to be this story because they need your help.


In her own words:



Cooper's Go-Fund-Me website

Heather's Blog
Cooper's Crusade Facebook Page
Instagram: heatheryv76

Jade



I haven't known this mama for very long but I feel like our souls have always been connected. This mama is wise beyond her years and has such a calm persona, a nurturing way about her and is such a ray of light-- she brings happiness to all of those around her.  She is doing amazing things in the world of advocacy in such a short amount of time!  I am so proud of her for teaching others all about dwarfism in the best way possible... by leading with love... not only in her homeland of Australia, but all around the world.

In her own words:



Jade's Website
Floyd-Henry Facebook Page
Women's Weekly Feature
Floyd-Henry's VIDEO
Instagram: jade_audrey_love

Abra



This mama I met via Instagram, but now are lifelong friends.  I saw a prayer request sent out by one of my friends in San Diego... turns out this mama is a friend of a friend of a friend. And miraculously... we live an hour away from each other.  Let me just say... she has the most incredible, unwavering and real examples of faith that I have ever witnessed.  She taught me "you come as you are."  She uses her whole self to fulfill His word and purpose for her.  I love to watch this mama in action... she's a dreamer like me and she goes after those dreams in full force.

In her own words:





Abra's Blog

Praying For Naomi Facebook Page
Instagram: thegiftoftoday

Tara



This mama is such a go-getter.  I mean, I think I don't sleep much... but there is no way she sleeps.  She is relentless (in such a good way) in the advocacy that she spreads in Canada and around the world for Down syndrome and for the love of her daughter Pip.  I love how she dreams big-- the next thing you know she is on a mission to have Pip on the Ellen Show, she's got a t-shirt line and she's on the news.  Oh, that was all within the last few weeks.  Last year her daughter was in heart failure.  This year, we are in celebration mode over the joy that Pip brings to everyone.  I dare you to try not to smile when you look at her picture.  Impossible.  


In her own words:




Tara's Website

Happy Soul Project Facebook Page
Instagram: happysoulproject

Chelley



Chelley has been a driving force in my journey with dwarfism awareness and education.  She is often the words I wish I could say, the determination I wish I had and a huge influence in this movement of equal rights for those of short-stature.  She is so passionate about reaching people, raising thought-provoking conversations and standing up for what is right.  She is not afraid to show her weaknesses and vulnerability but she is strong as an ox.  I am grateful for her.

In her own words:


Chelley's website

A is for Adalaide
Instagram: martinkadeluxe

Beth




I first learned about Beth and two of her beautiful children about a year ago... And I don't know how on Instagram we found each other but I will never forget she said, "I feel like I hit the Instagram jackpot when I found Lilah!"  And the thing is... it was me that hit the jackpot by being invited into their lives.  I love to watch Coco & Livvy in their everyday happiness.  Such joy!  So proud of this mama for all she has been through and all she does for those with special needs (and their mamas.)


In her own words:



Beth's Website

Parents Magazine Article
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