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
Showing posts with label dwarf. Show all posts
Showing posts with label dwarf. Show all posts
Thursday, August 7, 2014
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.
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.
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!
Sunday, March 2, 2014
Dear Hollywood...
Do you ever get caught up in the world and you just go along on what seems like a merry-go-round... and every now and again, you see or hear about something that doesn't sit well with your soul... but the ride keeps spinning and you are nervous to jump off?
Yes, it is easier to go along with everyone on the ride and do what they are doing... it takes so much courage to jump. Which is why I think more often than not, we stay on that ride.
That ride is Hollywood. It is the movies we watch, the shows that are in our living rooms every night, the stars we know everything about, the magazines telling us who to look like and what to wear, the musicians filling our heads with words. It is everywhere.
I am stepping off that ride and I have an open letter to read... ahem...
Dear Hollywood,
I want to tell you something... something is not sitting well with my soul. I would like for you, Hollywood, to take one moment and step outside of your bubble and step into mine. Sometimes, it is just easier to understand if you look at someone else's perspective. And that is what I am kindly asking you to do.
I am not here to be rude or put up a fight. I just want to share something that make my heart hurt... and when the world is agreeing with you by supporting your movies, your stars, your magazines, your musicians... I am saying, "Stop for just a moment... I have something that needs to be heard."
I know you are so busy with the Oscars this weekend... but let's talk about that. The movie, Wolf on Wall Street, that you have nominated for Best Picture... there is a scene in this movie where "dwarf tossing" occurs. Little people are used as darts and thrown onto a dartboard for the amusement of others.
Let's let that last sentence sink in. Little people are used as darts and thrown onto a dartboard for the amusement of others.
Even the writer of the film admitted to how awful this scene is and how it reinforces the preexisting societal stereotypes of little people... but yet he still went forward with this unnecessary scene. (See his interview here.) The Little People of America pleaded with the director to take out this scene, but they ignored them. You ignored them Hollywood.
So, Hollywood... I know what you are thinking... so what? It's a movie. Just because it happens in a movie doesn't mean anything. And, I can do whatever I want.
I understand where you are coming from, and before I had my daughter, born with dwarfism, I would have perhaps thought the same way. And while you are entitled to do what you want... you are sending messages to millions.
Here's the thing. A scene in a movie with little people is very influential for our society and the treatment and views towards little people. Why? Because, dwarfism is rare. (1-25,000 to 40,000 people are born with this genetic condition. 80% to parents that are average height.) It is unlikely that the average person will have many experiences with a little person in their lifetime. And so, what is portrayed on TV may be their only exposure to people with dwarfism. And aside from the two reality TV shows featuring little people and Peter Dinklage... Wizard of Oz, seven dwarves and a Miley Cyrus performance may be it. Oh yeah, and The Wolf of Wall Street.
As a mama, I want my daughter to have equal opportunities in her life. Of course... don't we all want our children to be treated equally? What if, someday, the person interviewing her for a job has only seen a little person in a dwarf tossing scene? Will she be taken seriously? Or worse, what if someday she is mistreated because of her genetic condition? What if she is ridiculed, singled out or patronized?
I understand that I cannot prevent these things from happening and I know in my heart that they will happen. I also know I need to raise her so she has confidence in herself and knows how much she is loved. And that-- we will do. But I also believe that you have to stand up for what is right and wrong and it is in those moments of the craziness of that merry-go-round we call life when something hits a nerve and you realize... it just isn't right. And as her mama, I will stand up for her because that's what we all do as mamas. We love and we love and we love... and we also try to make the world a better place for all of our children when we see an opportunity to do so.
Hollywood, we really do have a long way to go before those with dwarfism are treated equally in our society. It makes me sad when you produce something that so many people will see and perhaps laugh at. Or not think twice. I wish for every negative exposure you would provide at least ten positive exposures. Little people need to be seen as they are... as doctors and lawyers and teachers and mamas and friends. Not as silly characters. Or play things or anything less than human beings. And yes, it also takes little people to stop taking condescending roles... absolutely.
And your Oscars night will go on with the glitz and the glam and the celebrities patting themselves on the back for another "great" year in movies... But... if this letter doesn't make it to you Hollywood or if it gets ignored again... I hope someone somewhere between me and you reads this and thinks twice about supporting your film. Wolf on Wallstreet is not the Best Picture. It is a shame. And it is ok to say, "No, thank you." Not anymore.
Sincerely,
Leslie
Just an average mama 2,000 miles away from Hollywood
Here's my family...
Yes, it is easier to go along with everyone on the ride and do what they are doing... it takes so much courage to jump. Which is why I think more often than not, we stay on that ride.
That ride is Hollywood. It is the movies we watch, the shows that are in our living rooms every night, the stars we know everything about, the magazines telling us who to look like and what to wear, the musicians filling our heads with words. It is everywhere.
I am stepping off that ride and I have an open letter to read... ahem...
Dear Hollywood,
I want to tell you something... something is not sitting well with my soul. I would like for you, Hollywood, to take one moment and step outside of your bubble and step into mine. Sometimes, it is just easier to understand if you look at someone else's perspective. And that is what I am kindly asking you to do.
I am not here to be rude or put up a fight. I just want to share something that make my heart hurt... and when the world is agreeing with you by supporting your movies, your stars, your magazines, your musicians... I am saying, "Stop for just a moment... I have something that needs to be heard."
I know you are so busy with the Oscars this weekend... but let's talk about that. The movie, Wolf on Wall Street, that you have nominated for Best Picture... there is a scene in this movie where "dwarf tossing" occurs. Little people are used as darts and thrown onto a dartboard for the amusement of others.
Let's let that last sentence sink in. Little people are used as darts and thrown onto a dartboard for the amusement of others.
Even the writer of the film admitted to how awful this scene is and how it reinforces the preexisting societal stereotypes of little people... but yet he still went forward with this unnecessary scene. (See his interview here.) The Little People of America pleaded with the director to take out this scene, but they ignored them. You ignored them Hollywood.
So, Hollywood... I know what you are thinking... so what? It's a movie. Just because it happens in a movie doesn't mean anything. And, I can do whatever I want.
I understand where you are coming from, and before I had my daughter, born with dwarfism, I would have perhaps thought the same way. And while you are entitled to do what you want... you are sending messages to millions.
Here's the thing. A scene in a movie with little people is very influential for our society and the treatment and views towards little people. Why? Because, dwarfism is rare. (1-25,000 to 40,000 people are born with this genetic condition. 80% to parents that are average height.) It is unlikely that the average person will have many experiences with a little person in their lifetime. And so, what is portrayed on TV may be their only exposure to people with dwarfism. And aside from the two reality TV shows featuring little people and Peter Dinklage... Wizard of Oz, seven dwarves and a Miley Cyrus performance may be it. Oh yeah, and The Wolf of Wall Street.
As a mama, I want my daughter to have equal opportunities in her life. Of course... don't we all want our children to be treated equally? What if, someday, the person interviewing her for a job has only seen a little person in a dwarf tossing scene? Will she be taken seriously? Or worse, what if someday she is mistreated because of her genetic condition? What if she is ridiculed, singled out or patronized?
I understand that I cannot prevent these things from happening and I know in my heart that they will happen. I also know I need to raise her so she has confidence in herself and knows how much she is loved. And that-- we will do. But I also believe that you have to stand up for what is right and wrong and it is in those moments of the craziness of that merry-go-round we call life when something hits a nerve and you realize... it just isn't right. And as her mama, I will stand up for her because that's what we all do as mamas. We love and we love and we love... and we also try to make the world a better place for all of our children when we see an opportunity to do so.
Hollywood, we really do have a long way to go before those with dwarfism are treated equally in our society. It makes me sad when you produce something that so many people will see and perhaps laugh at. Or not think twice. I wish for every negative exposure you would provide at least ten positive exposures. Little people need to be seen as they are... as doctors and lawyers and teachers and mamas and friends. Not as silly characters. Or play things or anything less than human beings. And yes, it also takes little people to stop taking condescending roles... absolutely.
And your Oscars night will go on with the glitz and the glam and the celebrities patting themselves on the back for another "great" year in movies... But... if this letter doesn't make it to you Hollywood or if it gets ignored again... I hope someone somewhere between me and you reads this and thinks twice about supporting your film. Wolf on Wallstreet is not the Best Picture. It is a shame. And it is ok to say, "No, thank you." Not anymore.
Sincerely,
Leslie
Just an average mama 2,000 miles away from Hollywood
Here's my family...
Thursday, October 17, 2013
Our Stance on Awareness
I just finished my blog post... read it to my husband, read it to my mama. "No, " they said. Try again.
They were right. I was harsh, I was defensive, I was discussing the extreme and negative viewpoints concerning dwarfism that exist in our society. My husband asked, "Why did you take that approach?" I responded, "I want everyone to know what is out there so they can see why it is so necessary to be an advocate for dwarfism. To show how much more work needs to be done in our society." Did I mention that October is Dwarfism Awareness Month?
But I don't want to be that. I am choosing to not do that. (Thanks husband and mama.) And thanks alot to my dear friend Tiffany who is challenging all of us to choose kindness for one week straight. (Dang it! Lol) {Week of Kindness} I am all about choosing joy and I am taking that approach in this post: talking about dwarfism awareness.
I love my daughter. She is the air I breathe, the song I sing, the light in my life. She has taught me more in one year than I could have ever learned in a school setting. Mostly, she has taught be to be compassionate, understanding and kind. She has taught me to celebrate life and not hide behind in the shadows. She has taught me that different is oh so lovely and being comfortable in your own skin is the fastest way to happiness.
Before Lilah, I had little to no experiences with a little person. I had never seen the reality TV shows where little peoples' lives were featured, I had never met a little person personally and I can say that little people never crossed my mind. Chances are, you could say this about yourself too...
I struggle to communicate this next point... both of my children are so unique to me. I see them for who they are, the glimpses into their future and their silly little personalities. It is difficult when all I do is talk about how different they are to me and yet I want you to see them as a same as everyone else. I think parents can understand this paradox.
In following our story, getting to know Lilah, supporting her, rooting her on and loving her... you are helping to shed light to all of those with dwarfism. I am a believer in people and until someone proves me wrong, I will always give someone the benefit of the doubt that intentions are good. In my experience in the last year, we have had nothing but honest curiosity and productive questions about Lilah and her diagnosis. {And perhaps it is because I live in one of the best places to live... look it up, it's true CNN Best Places to Live. I love my town, just saying...} Yes, we may get lots of sideways looks and I know the thoughts running through their heads sound something like this, "How in the world is that 3 month old almost walking!" Lol... But, in all honesty, people have been so good to us. I have so much faith in people.
When it comes to dwarfism awareness, as a family, we have decided to let people into our lives. We want the world to see our daughter as Lilah and to take the mystery out of dwarfism. It is a rare condition and odds are likely that unless you found this blog because you have a connection to dwarfism, Lilah may be the only little person you "know." Because of the history of dwarfism and some current views and exploitations that still occur in our society, it is important to my daughter's future for us to share her story. And her story is one of victory, perseverance, and beauty. (But she's not even one! How can she already exhibit perseverance? If you spent two minutes with her... you would giggle at her determination. Ain't nothin' gonna slow her down.)
For each time a little person passes in from of your eyes via TV, social media, internet... I am hoping the experience is positive and you smile. Not because that individual is a little person... for a different reason. Perhaps they are chasing a dream, or smiling themselves, or having fun or loving life. To me, this is how we raise awareness. We teach, we love, we show kindness, we lose the chip on our shoulder, we see the good in people, we work as a team. Different but same. Capable, loved, unique... just like you.
You. You have been a part of this team for a year now (if not longer). When you share the blog, share our story, share our photos... you are taking the turn as an advocate for Lilah and for dwarfism. You may think nothing of it... but you are making a difference. I tend to go to the extreme in cases like this and think, "What if everyone was doing that? What if no one was doing that? What kind of world would this be?" If everyone was accepting differences, putting kindness first and focusing on good... people would be touched. And the later... I shudder to think about that. Reaching people, caring for people, loving people... that is the whole point. (And check out my buddy's incredible website: Understanding Dwarfism... he has dedicated his whole life to raising awareness. And, he's amazing.)
"But you can't change the world!!" What does it mean to change the world? If I have affected someone, I have changed the world and I am good with that. "But I don't always want to be an advocate!!" That is fine... to each their own. I do always want to be an advocate. It was a role that was dropped in my lap, one that I gladly accepted. If I have the chance to teach, I will. My daughter may not share that opinion... that is her choice and this is mine. "Don't you get sick of people always asking you about her size?" Nope. That's because I have decided to not let it bother me. She is small, that is a fact. Sometimes people feel the need to tell you about your child. And as weird as that is, I understand it. "Why in raising awareness and starting this blog do you have to be so honest in telling how you thought initially about having a daughter with dwarfism? Aren't you worried you will offend little people?" Hmmmm.... the hard question. It is never my intention to offend anyone, especially someone that is a part of an organization that has been so critical in my healing. When I first wrote my initial blog posts about "finding out" I immediately called me new LP friends and seeked their understanding. They did. Why? Because... this is a story with a beginning, a middle and someday an ending. I started with the truth. That's all I knew to do... I didn't sugar-coat it, I didn't exaggerate it. I told it like it happened. I am not proud of how I felt initially, but I am proud of how I have changed since those beginning days. If I didn't tell you the whole story, how could anyone relate, how could I help anyone and how could anyone understand how these challenges can be overcome. All I have is my story and I have a feeling that someday my daughter will be proud of me for sharing the whole truth so I could in turn help others. {Yes, these are all questions I am asked frequently... I am always welcome to answering questions.}
I am thankful in this month especially for our friends in the LP Community that are also doing their part to educate and share their stories. I have absolutely loved it and I have learned so much. And Courtney Simross... you are the wittiest person I have ever "met." Love you girl! To all of my fellow bloggers... thank you for being brave to share your story. The teamwork in this community to raise awareness together is so beautiful... we are all here to celebrate our lives, our differences, our loves.
They were right. I was harsh, I was defensive, I was discussing the extreme and negative viewpoints concerning dwarfism that exist in our society. My husband asked, "Why did you take that approach?" I responded, "I want everyone to know what is out there so they can see why it is so necessary to be an advocate for dwarfism. To show how much more work needs to be done in our society." Did I mention that October is Dwarfism Awareness Month?
But I don't want to be that. I am choosing to not do that. (Thanks husband and mama.) And thanks alot to my dear friend Tiffany who is challenging all of us to choose kindness for one week straight. (Dang it! Lol) {Week of Kindness} I am all about choosing joy and I am taking that approach in this post: talking about dwarfism awareness.
I love my daughter. She is the air I breathe, the song I sing, the light in my life. She has taught me more in one year than I could have ever learned in a school setting. Mostly, she has taught be to be compassionate, understanding and kind. She has taught me to celebrate life and not hide behind in the shadows. She has taught me that different is oh so lovely and being comfortable in your own skin is the fastest way to happiness.
Before Lilah, I had little to no experiences with a little person. I had never seen the reality TV shows where little peoples' lives were featured, I had never met a little person personally and I can say that little people never crossed my mind. Chances are, you could say this about yourself too...
I struggle to communicate this next point... both of my children are so unique to me. I see them for who they are, the glimpses into their future and their silly little personalities. It is difficult when all I do is talk about how different they are to me and yet I want you to see them as a same as everyone else. I think parents can understand this paradox.
In following our story, getting to know Lilah, supporting her, rooting her on and loving her... you are helping to shed light to all of those with dwarfism. I am a believer in people and until someone proves me wrong, I will always give someone the benefit of the doubt that intentions are good. In my experience in the last year, we have had nothing but honest curiosity and productive questions about Lilah and her diagnosis. {And perhaps it is because I live in one of the best places to live... look it up, it's true CNN Best Places to Live. I love my town, just saying...} Yes, we may get lots of sideways looks and I know the thoughts running through their heads sound something like this, "How in the world is that 3 month old almost walking!" Lol... But, in all honesty, people have been so good to us. I have so much faith in people.
When it comes to dwarfism awareness, as a family, we have decided to let people into our lives. We want the world to see our daughter as Lilah and to take the mystery out of dwarfism. It is a rare condition and odds are likely that unless you found this blog because you have a connection to dwarfism, Lilah may be the only little person you "know." Because of the history of dwarfism and some current views and exploitations that still occur in our society, it is important to my daughter's future for us to share her story. And her story is one of victory, perseverance, and beauty. (But she's not even one! How can she already exhibit perseverance? If you spent two minutes with her... you would giggle at her determination. Ain't nothin' gonna slow her down.)
For each time a little person passes in from of your eyes via TV, social media, internet... I am hoping the experience is positive and you smile. Not because that individual is a little person... for a different reason. Perhaps they are chasing a dream, or smiling themselves, or having fun or loving life. To me, this is how we raise awareness. We teach, we love, we show kindness, we lose the chip on our shoulder, we see the good in people, we work as a team. Different but same. Capable, loved, unique... just like you.
You. You have been a part of this team for a year now (if not longer). When you share the blog, share our story, share our photos... you are taking the turn as an advocate for Lilah and for dwarfism. You may think nothing of it... but you are making a difference. I tend to go to the extreme in cases like this and think, "What if everyone was doing that? What if no one was doing that? What kind of world would this be?" If everyone was accepting differences, putting kindness first and focusing on good... people would be touched. And the later... I shudder to think about that. Reaching people, caring for people, loving people... that is the whole point. (And check out my buddy's incredible website: Understanding Dwarfism... he has dedicated his whole life to raising awareness. And, he's amazing.)
"But you can't change the world!!" What does it mean to change the world? If I have affected someone, I have changed the world and I am good with that. "But I don't always want to be an advocate!!" That is fine... to each their own. I do always want to be an advocate. It was a role that was dropped in my lap, one that I gladly accepted. If I have the chance to teach, I will. My daughter may not share that opinion... that is her choice and this is mine. "Don't you get sick of people always asking you about her size?" Nope. That's because I have decided to not let it bother me. She is small, that is a fact. Sometimes people feel the need to tell you about your child. And as weird as that is, I understand it. "Why in raising awareness and starting this blog do you have to be so honest in telling how you thought initially about having a daughter with dwarfism? Aren't you worried you will offend little people?" Hmmmm.... the hard question. It is never my intention to offend anyone, especially someone that is a part of an organization that has been so critical in my healing. When I first wrote my initial blog posts about "finding out" I immediately called me new LP friends and seeked their understanding. They did. Why? Because... this is a story with a beginning, a middle and someday an ending. I started with the truth. That's all I knew to do... I didn't sugar-coat it, I didn't exaggerate it. I told it like it happened. I am not proud of how I felt initially, but I am proud of how I have changed since those beginning days. If I didn't tell you the whole story, how could anyone relate, how could I help anyone and how could anyone understand how these challenges can be overcome. All I have is my story and I have a feeling that someday my daughter will be proud of me for sharing the whole truth so I could in turn help others. {Yes, these are all questions I am asked frequently... I am always welcome to answering questions.}
I am thankful in this month especially for our friends in the LP Community that are also doing their part to educate and share their stories. I have absolutely loved it and I have learned so much. And Courtney Simross... you are the wittiest person I have ever "met." Love you girl! To all of my fellow bloggers... thank you for being brave to share your story. The teamwork in this community to raise awareness together is so beautiful... we are all here to celebrate our lives, our differences, our loves.
Monday, September 16, 2013
Family Featured!
Our family is featured in the latest Fort Wayne Family Magazine! Check it out...
http://issuu.com/kpcmedia/docs/family092013?e=4200578/4729411
http://issuu.com/kpcmedia/docs/family092013?e=4200578/4729411
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."
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.
Midget.
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.
Midget.
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.
Midget.
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?
Midget.
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.
Midget.
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.
Midget.
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.
Midget.
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.
Midget.
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.
Midget.
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.
Midget.
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?
Midget.
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.
Midget.
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.
Midget.
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?
Midget.
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.
Midget.
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.
Midget.
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.
Midget.
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.
Midget.
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.
Midget.
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.
Midget.
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.
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.
Photos by Brooke Aliceon Photography
Tuesday, March 12, 2013
Reflection
When I look in the mirror, I see me and when I see me... I see a big nose. A huge nose that's much too big for my delicate face, with a bump on top and a profile that's wanting something different.
But, I wouldn't trade it for all the clouds in the sky because it's my familes' nose. It belongs to those that came before me and reminds me of my lineage and where I come from.
I think I'll keep my nose.
When I look in the mirror, I see me and when I see me... I see lots of freckles. Freckles covering my body head to toe. Contrasting dark brown with my light skin like a connect-the-dot game.
But, I wouldn't trade them for all the fish on the sea because they're a stamp from my childhood. A wonderful childhood spent outside in the lake, sun-kissed and barefoot. It reminds me how lucky I was to grow up wild and free.
I think I'll keep my freckles.
When I look in the mirror, I see me and when I see me... I see a birthmark as big as I've ever seen. Red as a cherry and right on my side. The doctor told my mama it was a bruise from delivery and it would go away. 33 years and still waiting...
But, I wouldn't trade it for all the flowers in the field because for some reason it never wanted to leave so how could I ask it to go? It makes me different. It makes me unique. A kiss from the angels before they sent me on my way.
I think I will keep my birthmark.
When I look in the mirror, I see me and when I see me... I see a scar right across my tummy. 5 inches in length. My whole life... not there... and then one day it was.
But then so were you. It was my way of making sure you arrived safely. It was my last gift to you when I was your home. My goodbye. My welcome. My I-would-do-anything-for-you. My I-can't-live-without-you. My constant reminder you're here, you're my daughter, you're perfect.
I wouldn't trade it for anything in the world.
I think I'll keep my scar.
For this is who I am. These things make me more beautiful because I have a story to tell. And it's mine, only mine.
But, I wouldn't trade it for all the clouds in the sky because it's my familes' nose. It belongs to those that came before me and reminds me of my lineage and where I come from.
I think I'll keep my nose.
When I look in the mirror, I see me and when I see me... I see lots of freckles. Freckles covering my body head to toe. Contrasting dark brown with my light skin like a connect-the-dot game.
But, I wouldn't trade them for all the fish on the sea because they're a stamp from my childhood. A wonderful childhood spent outside in the lake, sun-kissed and barefoot. It reminds me how lucky I was to grow up wild and free.
I think I'll keep my freckles.
When I look in the mirror, I see me and when I see me... I see a birthmark as big as I've ever seen. Red as a cherry and right on my side. The doctor told my mama it was a bruise from delivery and it would go away. 33 years and still waiting...
But, I wouldn't trade it for all the flowers in the field because for some reason it never wanted to leave so how could I ask it to go? It makes me different. It makes me unique. A kiss from the angels before they sent me on my way.
I think I will keep my birthmark.
When I look in the mirror, I see me and when I see me... I see a scar right across my tummy. 5 inches in length. My whole life... not there... and then one day it was.
But then so were you. It was my way of making sure you arrived safely. It was my last gift to you when I was your home. My goodbye. My welcome. My I-would-do-anything-for-you. My I-can't-live-without-you. My constant reminder you're here, you're my daughter, you're perfect.
I wouldn't trade it for anything in the world.
I think I'll keep my scar.
For this is who I am. These things make me more beautiful because I have a story to tell. And it's mine, only mine.
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