Sometimes They Look At Him

It happens. And it's likely happening more than I know. But when you're different, people will look. It's just the way it is. People are curious. They are concerned. Or perhaps they think there is something to laugh about. Or they are simply noticing. Some say it's human nature. But regardless of why, they always look. And since Ryan is different, sometimes they look at him.

My first thought is that they are taken by Ryan's off-the-chart cuteness factor. Aren't we all? :) Or possibly they are drawn by his contagious smile and magnetic personality. There are a million wonderful reasons why a person may look at my son. But no matter how positive the attention is, it's still attention. They are still looking at my little boy.

Recently at a park, a little girl was staring at Ryan as he played with his friends. She just stood there and watched him. Though she didn't speak, her eyes said enough. Like lasers they sought him and exposed his difference. They singled him out and made him weird. They teased and laughed. And they hurt my heart more than I can explain. But when Ryan noticed her, he introduced himself. And he even told her that he is "Little Big". My damaged heart become whole in a moment. And though her eyes didn't divert from Ryan, he gave her eyes something to see.

Sometimes they look at him. But I've learned that sometimes it can be a good thing. I know this is true because Ryan reminds me every day. The day at the park is just one example of big and small moments when Ryan stands taller than tall. While I sat on the sidelines wishing for a reason to smack the girl's mother - how dare she teach her child such hurtful tendancies?! - Ryan received an opportunity. And he took it. The little girl gave Ryan a chance to speak up. And a chance to stand up for himself. She gave him an occassion to be proud of who he is. And he took it. I was so proud.

Sure, people look at Ryan. And often I find it hard since actions really do speak louder than words. The looks and stares are so hurtful. Pointing fingers, avoidance and laughter make deep deep wounds. But then I remember, actions speak louder than words. It can go both ways. When Ryan rose to the challenge the little girl offered at the park, he didn't raise his voice or fight back. In fact, he barely said a word. Instead, he made her actions insignficant when he ignored her and continued to play with his friends. He didn't care that she was staring. Her attitude didn't have to ruin his day. And it didn't.

Sometimes they look at Ryan. And sometimes it hurts his feelings. And it always breaks my heart. But it will never define how Ryan feels about himself.

Big Facts about a Small Boy

October is Dwarfism Awareness Month! And in honor of this month I thought it would be a good time to share some information about Ryan and his condition.

First, the most important thing to know about dwarfism is …

WE LOVE IT WHEN YOU ASK QUESTIONS!

Please ask me and/or Ryan why he is so small. Ask us what you're concerned about. Give us a chance to help you understand. One thing I've learned over the past six years is that acceptance doesn't exist without understanding. And so we LOVE it when you want to understand. 

Here are some typical questions that I have come across. 

Is dwarfism hereditary? Well, yes and no. In our case no. My husband and I are both average height. In fact, more than 80% of little people are born to average height parents. Scott and I had no idea that our son had achondroplasia until after he was born. Many families learn about their child's dwarfism during pregnancy. Which for me, would have made delivery and the first couple of months a lot easier! I'm a bit of a planner. And I certainly hadn't planned on my baby having dwarfism or having the endless possible complications that come with it. But just days after his diagnosis, Ryan taught his plan-crazy mom that perfection can't be planned. 

For little people, the chance of having a baby with dwarfism is much more likely. And that is definitely the case for Ryan. He carries one dwarfism gene and one average-height gene. 

How did Ryan get achondroplasia?

Achondroplasia is caused by a change with the FGFR3 gene. During fetal development, the skeleton is made up of cartilage. Normally the cartilage converts to bone. But for Ryan, this didn't happen. 

The FGFR3 gene is responsible for the production of a protein that is necessary for bone growth and maintenance. For those with achondroplasia, the gene has mutations that cause the protein to be overactive and to interfere with skeletal development.

This genetic change occurs only 1 in 26,000-40,000 births (that's 0.0025%!).

In comparison, the chance of having identical twins is 1 in 250 (that's 0.4%!).

We definitely consider ourselves winners of the genetic lottery! 

How small was Ryan as a baby? Since Ryan is so much smaller than his peers, you'd think he was a fraction of their size as a newborn too. But actually, many babies with achondroplasia are born in the typical height and weight range. Ryan was 6lbs 15oz and 19" long. But if you looked closer, you'd definitely notice that his head was big while his arms and legs were short. There were other signs like his "trident fingers" and the ear infections he got at just two days old. We may not have seen it right away, but looking back we had many indications. 

Does Ryan have medical problems? Ryan is doing really well! Overall, a person with dwarfism will lead a perfectly full and typical life. People with dwarfism have normal life spans, normal intelligence and pretty good health. 

But there are many complications with dwarfism to watch and possibly manage with surgery. The severity of complications varies a lot from person to person. Ryan has had sleep apnea corrected by tonsil and adenoid removal. He had ear tubes placed at 9 months old and we monitor his ears now since the tubes left holes ("lucky" Ryan this isn't typical). He has also had MRI scans to watch for spinal compression and hydrocephalus. Ryan’s first year was extremely hectic and stressful as we went down the list of complications, doctors, tests and procedures. But we made it and today we are managing his needs as they come up.

Ryan has a lot of doctors that help us keep him doing well and are also available to navigate needs as they arise. Ryan has a Pediatrician, Genetic doctor, ENT doctor, Pulmonary doctor, Neurologist and Endocrinologist. He's proven to be quite tough when it comes to constant doctor visits and tests!  

How tall will Ryan get? The average height of a person with achondroplasia is 4 feet tall. Ryan's torso will be the majority of his height since his arms and legs are short. 

Is Ryan a "midget"?  NO. Definitely not. The world "midget" (or M word) is considered very offensive to people of short stature. The word was used back in the late 1800s during the "freak show era" to describe little people that were displayed for public amusement. Which is why it's so unacceptable to most little people today. Like anyone with a difference or disability, little people should not be laughed at. Ryan likes being called "Little Big". And the term Little Person is also good. Referring to Ryan as a "person with dwarfism" is ok too. Another option is to simply use the person's name. Ryan goes by "Ryan" with friends and teachers and by "Ry" at home with me. 

What do you need to do at home to accommodate Ryan's needs? Some people prefer to renovate their home to accommodate the needs of a person with short stature. Which is wonderful since it makes for an easy and comfortable home life. For Ryan, we have made some changes, but we also want to make sure that his normal habits are to adapt and adjust himself. The world isn't going to be renovated, so we want to make sure that he gets plenty of practice with chairs, stairs, doors, etc. at home. We have made adjustments in places like the bathroom for his personal care and the stairs for his safety. Perhaps as an adult he will make more accommodations in his own home. Or perhaps not. He's pretty good at adapting in the big world!

This is good start to understanding dwarfism. I hope you found it helpful and interesting. Thank you for your interest! And don't forget to ask us questions! 

Extreme WHAT Wrestling?!

A letter to reach out for help and to vent my frustration ... 

Dear City of Chandler, "Extreme ___ Wrestling" and HDE Agency, 

Allow me to introduce myself. My name is Erin Parsons. I am the mother of two amazing children. My son Ryan is 5 years old and has a form of dwarfism. And today, Ryan stands MUCH taller than you. 

I'm writing this letter in regards to the upcoming event in Chandler, AZ that is hosting "Extreme Midget Wrestling" on 9/16/17. It's beyond frustrating to me to witness the lack of concern regarding this event. Please take a moment to read this. I ask you to think about my sweet amazing 5 year old that is made a joke from this event in our very own community. I hope you think about him, about other little people, and maybe you know someone that has a condition that makes them different. 

For many, the "M Word" is not understood. After all, dwarfism is really rare. I too lacked understanding of the condition until Ryan came along. In fact, my son was the first little person I had ever met. So with this in mind, I took it in consideration that perhaps you weren't aware of how hurtful this word and event is to my son, his family and to others with dwarfism. So I made a phone call. My husband wrote an amazing letter. Our local LPA (Little People of America) wrote letters and made calls. And we received a response. But unfortunately our joy for this response quickly dissipated as we were told that though this event is happening in our community, that it wasn't hosted directly by the city and therefore could not be canceled. This isn't right. 

The wrestling event is using the "M Word". Perhaps you may wonder what is hurtful about this word? For starters the word "midget" comes from the word midge which means "small fly". Please don't call my son a small fly. Please don't label him a pest. And please don't give him the idea that he isn't worth more than a pesky fly. The "M Word" also promotes a negative stereotype about people with dwarfism. It's reinforcing the idea that little people are a joke to be laughed at. Please don't laugh at my son. Don't point at him. Please don't make it ok to laugh at his condition. The "M Word" is a disempowering word that makes a little person feel "less than". It's dehumanizing. It's humiliating. It's about basic respect and not labeling people. 

Take a look at the comments in social media advertisements for your event. There are countless comments spreading hatred towards little people. Comments that are crude. And hurtful. And every single comment is about my son. They are about other children that share the same condition. They are about the short-statured professionals that he looks up to. They are about doctors, teachers, lawyers, students and actors. They are about my 5 year old son. And he's so awesome. The kid can light up a room with his smile. His determination and love for life is incredible. I'm so proud of the life he leads. But it has taken work. And when the "M Word" is used, our hard work unravels. The comments that I see in your advertisements are the reason my son will struggle. And he deserves better. He deserves respect. Especially from his own local community. 

You have shared that this event that is "designed to generate new awareness while benefiting the fundraising efforts for the Downtown Chandler Community Partnership (DCCP), a 501(c) 6 nonprofit corporation whose mission is to mobilize leadership and resources to advance the development of downtown Chandler as a regional destination for shopping, dining, living, culture and the arts". The wrestling event surely doesn't support this mission. It clearly lacks in culture, class and above all, basic leadership morals. 

Please think about what the wrestling event says to my son. Please give him and others with his condition the respect and life that they deserve. 

Thank you

Erin and Ryan Parsons

The Day Has Come

I was certain that I would dread this day. That it would be the cause of endless tears and stress. But I don't. And I'm ok. And so is Ryan. Today is his first day of Kindergarten!

Like many parents of children with conditions, I never thought that this feeling of content would be possible. Ever since our first Little People of America event, my eyes were opened. I met adults and children that have achondroplasia - just like Ryan does. I heard about their good experiences and their bad ones too. The world doesn't make life easy for a person with dwarfism. The idea of going to school with hundreds of children that were all older and bigger than Ryan scared me. I remember standing at our first LPA event and holding Ryan tighter and tighter. And it hit me. I can't hold and protect him in my arms forever. One day soon I would have to release Ryan from my arms and trust him and those around him. And so our work began. 

At first it seeemed easy. My husband and I embraced Ryan's condition and it seemed like enough. Ryan was perfect. His height didn't matter. Until I looked forward. Ryan would need more than a mother's love to handle school, friendship, work, love ... life. He would need self acceptance and love for himself. He'd need confidence. And he'd need thick skin and a sense of humor too. Challenge accepted. It was time for me to get Ryan ready for life as a little person. He had just five years to understand and accept his difference. To learn how to stand up for himself and to handle negativity that would surely come his way. All of this starting before he even knew how to talk. But I knew he could handle it. He had to.

It's easy to think that Ryan is just a happy kid. For starters, he is a happy kid. But it's not entirely "just the way he is". And he's in good company with other kids that have conditions. Having a disability takes a lot of work. And boy has Ryan worked. Five years flew by and were filled with endless pep talks and information about dwarfism. I came up with the phrase "Little Big" helping Ryan understand that though he is little, he can do big things and he can be big. He attended tons of LPA events and met other kids just like him. And at the same time, Ryan was immersed in the world of average height friends at school. He learned how to stand in line, write and follow directions. But more importantly, he developed his sense of self. He realized his difference while also making friends. He learned that the two can go together. His thick skin began to develop. Over the course five years he experienced life as a friend. As a student. As a baseball player and swimmer too. He did it all. He did it with stools. Hemmed pants. Doctors appointments and adaptations. But he did it. He experienced life as a little person. Phase one of a billion complete. We have a lot more work ahead. But today we celebrate.

I'm so proud of Ryan. And I'm proud of myself too. I set the bar high. I pushed him out of his comfort zone. He had to adapt, find his voice and learn patience. I'm his biggest cheerleader and his drill sergeant. And after all of our work, Ryan has risen to the challenge and is ready for Kindergarten. Ryan is ready for Kindergarten because he's worked for it. He's ready for Kindergarten because he's freaking awesome. And most important of all, he's ready for Kindgarten because I realized that even though I have to physically let go of my boy, as long as he loves himself, my embrace will last forever. 

He Puts His Pants On TWO Legs At A Time

It was a typical morning. Everyone was up and getting ready for the day. I handed Ryan his pants and watched him get dressed. That's when I noticed. Ryan did something that I had never seen before. It's quite possible he is the only person on the planet that does this. He put his pants on TWO legs at a time.

My son is different. It's something that I rarely see or think about, but at the same time, Ryan reminds me constantly. Sometimes he's simply standing next to a friend. He's so tiny next to his friends. Or perhaps he's trying to get shoes onto his thick chunky feet. Or, like this particular morning, unlike the rest of the universe, he's putting his pants on TWO legs at a time. Apparently Ryan hasn't gotten the memo that everyone puts their pants on ONE leg at a time. It's that very act that supposedly unifies us all together and reminds us that despite our conflicting opinions, contrasting beliefs and different appearances, we are all the same. Enter Ryan. Yup, he's different.

These moments that remind me of Ryan's difference are continuous. Sometimes the reminders are heart warming and other times they are heart breaking. Our normal is far from the standard. My house is littered with stools, pointers and extensions. And my calendar is booked with numerous specialists year round. I even have a sewing machine - I never thought I would take on the challenge of sewing. When it comes to the creative arts, my mind is always eager, but my output makes Pinterest cringe. At least I've managed to get the hang of hemming pants! After all, Ryan's legs deserve some daylight just like anyone else's.

Of course, it's no surprise that Ryan's daily life makes his difference stand out. After all, he IS different. And his difference is in plain site. All. The. Time. No matter where we go, it's clear that Ryan is little. It's obvious that he is different. There's no blending in for Ryan. He's exposed no matter what he wears, says or does. Whether we want it or not, Ryan's dwarfism is part of who he is. After all, it's the first thing a person sees when meeting him. I hate the fact that this sometimes means that he will be judged before he's even said "hello". And other times he may be teased just for how he looks. These are the heartbreaking moments.

But Ryan overshadows the heartbreak. On a daily basis I'm reminded how our differences are what make us awesome. Ryan is the smallest kid in his class. But he's also the loudest. And he's actually looked up to. If you can believe that! His confidence and love for life is sought after by his friends. And when it comes to his hurdles, he's always finding new and inventive ways to get it done. And he's got it done often before I have a chance to realize the possible challenge. Ryan is different alright. And as odd as it may sound, I'm grateful for his difference.

Over the past five years we have celebrated Ryan's special difference. And in a world where people put their pants on one leg at a time, Ryan is being himself and he ROCKS. Sure he has rough times. There are tears, frustration, pain and fear. These emotions are a standard for us. But being different has also benefited Ryan. For starters, he's made me a better mother than I could have ever imagined. And he's learned the value of friendship. Of trust. And of pride. He knows who he is and likes himself. It's unreal.

Apart from himself, Ryan sees the world for what it has to offer. And I've learned to do the same. I've never noticed such beauty in people's appearances, voices and actions. Ryan is in good company when it comes to being different. Sure, being different means more attention. I've never been a headturner myself, but with Ryan in tow we are noticed. I'm not ashamed of the fact that Ryan turns heads. He's short, but he has a smile that spreads like wildfire. If it weren't for Ryan's difference how many people would miss out on a spontaneous midday smile? Would we see all the beauty out there in the world? Yup, being different is something to notice.

Sure, he puts his pants on two legs at a time. But I guess it makes sense. He's ready to go in half the time. And he's definitely a kid that's going places.

Ignorance IS Bliss

A few days ago the kids and I enjoyed the most wonderful morning at the local public pool. It's a giant facility complete with multiple pools, splash pad, water slides, river pool and more. We met up with some friends and a few hundred strangers joined us too. Typically I run the opposite direction from busy places, but when it comes to a swimming experience like this, I just had to try it out.

Swimming pools are notorious for exposing our insecurities and differences. And it's funny, but this didn't occur to me until we got home. There we were in the middle of a few hundred people and I didn't think about Ryan's difference. Or what others may or may not be thinking. As far as I saw, there weren't any stares. Fingers weren't pointed in our direction. I didn't hear any snickers or name calling. All I saw was my son, his sister and their friends having a blast together. And all I heard was the kids' playful banter and myself catching up with friends. And yet, this picture perfect experience may not have happened at all. I guess it is true ... Ignorance IS bliss.

It's a phrase that I've heard my entire life. Most people say it in passing. But for me, I've come to believe that it's the reason for my happiness. Ryan has dwarfism. And that means he looks quite different than his peers. For the past five years, his difference hasn't been dramatically evident. But now that he is far out of the baby stage, he stands out more and more.

When I look at Ryan I don't see anything different. I just see my little boy. I see Ryan. Maybe that's part of my ignorance. After all, Ryan's small size is our normal. I often forget that he is a little person. Our normal is a happy place. Ryan is loved for who he is. And he loves himself for who he is. Just like the normal that many families experience. We embrace who we are and venture outside of our home with loads of love and support behind us.

But outside of our home there is no denying that Ryan is different. That our normal isn't typical for most. And because of his rare condition, there can be stares. Name calling. Finger pointing. Laughing. Everything I've feared from the moment he was diagnosed. But what I didn't count on was my ignorance. Who would have thought I would be so happy to be completely and totally oblivious? But I am. The big mean world has no affect on me. Or Ryan. And it's not because the stares and comments aren't coming in our direction. It's because we haven't noticed. We are out doing our thing. For now, our happy protective normal travels with us. We don't worry about what others are thinking. So we don't see anything to get upset about.

Of course sometimes I see looks and glances in our direction. But my ignorance only glorifies these occurrences. I see the looks turn into smiles and I take them as compliments. After all, they could be looking at us because they like what they see. And I refuse to let myself believe otherwise. What's the point? I'm going to enjoy the "not knowing". Making someone's glance into an insult causes hurt and pain for us. And it may not even be accurate. I'm choosing ignorance over anger and tears.

As Ryan and his peers are growing up, I'm starting to hear more and more heart-breaking stories from our fellow "Little Big" friends. There's cruel pointing. And name calling. Directly into a child's face. It angers and frustrates me how some kids and adults can be when it comes to a person with a disability. I'm sure my ignorance is only temporary and that we will soon experience what our dear friends have. But because I've enjoyed my ignorant bliss for so long now, I'm determined to learn from it. To utilize it to make these experiences more bearable. And to make them insignificant.

As my ignorance fades and the world doesn't allow us to miss the cruel and hurt, I need to look back at my ignorant bliss as a reminder. When wounding words and gestures are directly in our face, I need to choose bliss over sadness. I need to remember that there are nasty people in the world who for whatever reason, feel the need to cut others with their words. But the words won't cut deep if we don't let them. I need to remember that I have a choice. I can choose the hurt or I can choose bliss. If I am able to render the sharp angry words insignificant, then they can't hurt us as much. These experiences will always draw some blood and tears. It's impossible to walk away unscathed from such horrible experiences, but it is possible to move on and to choose happiness. To choose ignorant bliss.

You may worry that choosing ignorance may result in lost chances to educate. And to put the nasty in their place. But despite lacking in drama, ignorance still makes quite a statement. Actions speak louder than words. By choosing bliss, hurtful people don't matter. The cruel words are lost and we carry on with confidence. Ryan is small, but he's not a joke. And though he's small in size, he's larger than life when it comes to everything that matters. Just watch - glance in our direction. Stare at us. It's ok. We have something to show you.

The Sibling Struggle

Having a child is a challenge. And if that child has a genetic condition it's tough. And when there's a sibling in the mix it's more difficult than I could have ever imagined. My life is complicated. I have one child with a genetic condition and one that doesn't.

The moment Ryan was diagnosed with dwarfism I knew that our path in life was going to be rough at times. Having a child with a condition means that there is always something to worry about. We have specialist visits, tests and procedures constantly. And on top of that there is a long list of complications to watch out for. Some are major and quite scary. And yet, despite all of this, I've come to find that in many ways I worry more when it comes to my daughter.

For the most part, my children don't have dramatically different needs. They are close in age and share many of the same interests. At five and almost four years old, they even share friends. But regardless of this, I have found it to be a struggle to find the right balance for my children. I never could have guessed that I would struggle with this. The balance of attention seems so straight-forward. I  have two children. So there isn't a middle child to worry about. And I have a boy a girl. No direct comparison possible. Easy right? I sure thought so. But boy was I wrong. Adding a genetic condition to the mix changes everything.

Having dwarfism made the first year a rough one for my son. And even more so for my husband and I. But, if you asked me when I was pregnant with my daughter, I would have told you that it would be a simple task to share affection for my two children. My heart is giant. There's plenty of love and attention to give! But it's just not that simple.

Watching your child suffer and fight through medical tests and procedures isn't just tough. It's life altering. I'm a different person than I was before I had my son. My son gets through medical challenges, faces social confrontations, and is constantly adapting to keep up with peers. And he does it with a smile. Before he could speak, he taught me more about life than I could have imagined. And he continues to do so today. Having a child with a genetic condition creates a bond stronger than strong. And this is why I struggle.

I don't favor my son. I'm certain of that. But the worry is relentless. Does she think he's my favorite? Does she feel loved and valued? Do I hug her enough? I may not love her less than my son, but I am guilty of expecting a lot from her. Before she was even born I wished her to be strong and confident. And she is. And then some. She not only rises to meet my expectations, but she always surpasses them. She's fiercely independent and self-teaches herself almost everything. Perhaps this independence that contrasts with my son's meek and timid demeanor is part of my challenge. My daughter never seems to need attention. But I constantly worry. Am I missing her signals? Is her typical three-year old behavior really a cry for attention and love? I fear that I'm letting her down.

The sibling of a child with a genetic condition has it rough. In many ways my daughter has it tougher than her brother. At a young age she's expected to understand and accept. And to help others do the same. She has a life that tends to revolve around her brother's needs. And she's on the sidelines watching him endure tests and procedures. No matter how well I protect her, she's experiencing stress. She sees the worry and fear in my eyes. And the relief and love in them when it's all over. And she waits. And I wonder if she's waiting for her turn when my eyes are on her.

Siblings don't sign up to be the best friend and protector of their challenged brothers and sisters. But they take it all on without a second thought. Ask my daughter who her best friend is. She won't blink an eye and she'll tell her that it's her big brother Ryan. The bond that they share is truly one of a kind. And it's stronger than steel.

Siblings are real-life superheros. My daughter stands strong and proud next to her brother. She's happy and fun. And she's a badass. My sweet Super Girl doesn't mess around. She's tougher than tough and she's wise beyond her years. And with this super power, she also calms my anxiety. She's not only my son's superhero, but she's my hero too.

Perhaps we were chosen to be a family made complete with a child with dwarfism. Or maybe we just got lucky. Because despite all of my worry, my daughter was born to be a superhero. I'm always going to work on watching for her needs, since even superheros have needs. But I know that as long as I value my Super Girl and her power, she's going to be ok.

Please Ask About My Son's Dwarfism

Everyday we meet new people. After all, people are everywhere. They are at the store. At school. And at the park. Not everyone realizes that my son has dwarfism. At five years old, he still blends into the "cute little boy" category. People come to find that he is different when they applaud his vocabulary and I respond by thanking them while also informing them that he is five years old. That's when I see the wheels turning, and a click. Something is different about this kid.

This sort of introduction is happening more and more. But it doesn't make me sad. And it doesn't frustrate me. Because first of all, my son is adorable. And he is super smart. And above all, we love telling people that he has dwarfism. Our son's difference is part of who he is. And sharing what makes him different is not only our acceptance, but it's giving a voice to a condition that needs it badly.

The most frustrating aspect of having a child with dwarfism isn't the medical complications. It's not the clothes. Or the adaptations. It's not even the negative people that challenge us. The most irritating part of having a child with dwarfism is the fact that for most people, their only exposure to dwarfism comes in the form of jokes and the old age "freak show era" when little people were for the entertainment of others. And on top of that, dwarfism is the topic of countless comic bits. And some little people allow themselves to be hired for parties and seem to be nothing more than an "add-on joke". Other little people are in the circus and shot out of cannons. Some even wrestle for an audience. This limited exposure promotes the idea that little people are a joke. That they are to be made fun of and laughed at. But in reality, little people are far from this visual and stereotype.

Most of the negativity that we encounter is ignorance. People don't connect their "midget jokes" to a child like my son. Just like they wouldn't use the word "retarded" if they knew someone with down syndrome. The lack of connection and inadequate education on differences makes the majority of people simply unaware.

For many, the differences in the world are hilarious until a connection is made. In person or not, the connection is vital to understanding. Once you meet my son, it's suddenly crystal clear that little people are just that. People that are little. That's it. And in an instant, acceptance isn't just a vague idea. It's not even a favor. It's what's right. Knowing a person that is different, gives meaning to hurtful words. Cruel jokes have a sharp sting. And the laughing is ear piercing.

That's why I'm here today. I know this must be the reason I was given the "gift of gab". I need to promote what it really means to be a little person. What it means to be any kind of different. Knowledge is most definitely power. It's literally eye opening. I know this because it's exactly what happened to me. Having a child with dwarfism has enabled me to appreciate the beauty of everyone's differences. I know that when it comes to my son, I won the genetic lottery. And I can't wait to tell you about it.

So please ask me about my son's dwarfism. Ask your neighbor about her autistic daughter. And your coworker about their son with down syndrome. We all want to tell you so that you can see what we see. We see children that are tough as nails. And wise beyond their years. They are hilarious. And trouble-makers too. They love having friends and the feeling of a big hug. So ask away. There's no such thing as a "bad question". Asking about my son and dwarfism is the equivalent to a high five. Or a giant hug. It's interest. And it's acceptance.

More Than Words

It happened again today. My mind is blown. My heart is full and overflowing with pride. I've wished for this. I've dreamt about it. And today, I heard it with my own ears. Again. Ryan said something that I thought would only exist in my dreams.

To some, what I heard may sound like nothing more than typical preschooler babble. But when it comes to having a child with dwarfism, my ears are finely tuned to listen for these moments. And what I heard today came out loud and clear.

While playing with his sister, he declared that his Superhero "Is Little Big like me. And he can do anything that a big person does." Ryan and his sister continued their play as if he only casually mentioned something about Superman's cape. But he didn't. He said more. So much more. He said "I like myself." He told me that he is listening to my ramblings about dwarfism. And that he hears me when I say that being little doesn't mean that he has fewer opportunities. He said "I'm going to be ok mom". As if he knows that I have a long list of fears that I constantly battle. And most importantly, I heard him say "I love myself". This kid. He loves himself. And he says it in passing.

It's not just me that hears him. His sister and friends hear him too. Ryan makes his size the last thing people see when they meet him. At school when he plays hide-and-seek, kids see a classmate that likes the same things. When he tells jokes and points out the silly, they see a peer that makes them laugh. And when he waves and says hello everyday, they see a friend. They see Ryan.

I wish I could say that we are done building confidence and self-love. But I know that we have barely begun. And I have no idea what the future holds. But what I do know is that Ryan has built a strong foundation for his future. His outlook makes the negative insignificant. His achievements enable him to overcome challenges. His friendships obstruct those that try to bring him down. Today he stands tall and proud. And because of who he is today, he's already accomplished more than I could have imagined.

I'm going to keep rambling. Ryan's going to keep on being Little Big. And we're going to be proud. Today. And the next day. And a million tomorrows after that.

Swearing is Caring

There are many days when I can't wait until Ryan is old enough to swear. If this makes me a poor parent then so be it. But honestly I don't know what all the fuss is about anyway. Swearing doesn't always have to be a bad thing.

I'm typically a very positive person. I swear it. ... ha ha. Couldn't resist. But it's true. I am an optimist for the most part. My brother once said that I could find the good in anything. And I can. In fact I have. Since let's face it. Having a child with a genetic condition isn't exactly a walk in the park. For the most part I'm doing well finding the good. Making the best of things. And enjoying my view of what we know to be true. I don't worry what others think. Or what they might say behind our back. Because we know that Ryan is awesome. And that he's surrounded by family and friends that know this also.

But even positive people have moments. And even though Scott likes to refer to me as Flanders (the character on The Simpsons known for being extremely prude), I sometimes have the need to let out a few catchy four letter words. If you're really into the Simpsons, you may have heard that Flanders' conservative language has been said to be a result of buried anger from his upbringing. So even Flanders may need to let it all out once in a while. Perhaps swearing really is a good thing after all.

Maybe if Ryan didn't have dwarfism I wouldn't feel this way about swearing. But no matter how great of a view I create for our family, the world still has negativity in store. And dwarfism is often the center of this sort of attention. Little people are the butt of jokes. And are made fun of for simply existing. There's pointing and staring. Snickers and giggles. The degrading word "midget" is used to demean and label a person as insignificant. All of this is directed at a person who is just navigating their life like anyone else. A person shopping. Getting coffee. Riding the bus. Or on a vacation. Some people take it to the next level and shout out names. Or take pictures. The harassment is endless. And it's directed at adults and children. At children. How can this be?! We are talking about a child with a disability. About people that are sons, daughters, mothers and fathers. People. The world can be cruel. And Ryan will not have to take it.

We can't all be like Flanders. Plus, who knows if he's as happy as he seems. Ryan will swear and in the process, he'll manage his feelings in a way that releases tension and anger. Sure, I could teach him to meditate. Or to punch pillows. Or to "talk it out" with me or another trusted adult. But when you're upset beyond comprehension, shouting "Shuck-a-diddly-doo" and high-fiving a pillow just won't cut it.

Enter the "F Word" and all its relatives. When Ryan is confronted with negative people, he'll know that they aren't important. "Fuck those fuckers". This sentiment is dead on. And a bit abrupt I know. But I can't get past just how accurate it is. Ryan has a tight network of friends and family that love him. They are his friends at school. His teachers. His neighbors. His baseball team. And they all see him for who he is. Nothing more. Nothing less. And they are all that matter. When Ryan is upset and I tell him "Fuck those fuckers", I'm being a bit crude I know. But I'm also reminding him that he doesn't need the rude people in his life. And that he doesn't have to let them get to him. Who needs these people? Fuck 'em. It's crude. But it's true. And it doesn't have to be anything more than affirmation of how great Ryan is.

Since he's just five years old at the moment, I have a ways to go until he can utilize this expression. So in the meantime, I'll stick to the same message without the profanity. Sure, it's possible. And it's been working great for five years. So do I really need those four-letter words? Sorry Flanders. I fucking do.

The Big Little Moment

Looking back at Ryan's 5th birthday is something I never expected to be happy to do. In fact, I dreaded that birthday. I wasn't upset about him leaving babyhood behind. Or that he would soon be going to Kindergarten. In fact, these are aspects I was eager to celebrate.

The 5th birthday is a big deal. And for a child with dwarfism, it's a huge milestone. Turning 5 isn't just about the new world of experiences, accomplishments and expectations. It's not Kindergarten. It's not new chores and rules. It's not about self care. Or homework. It's about the "Big Little Moment".

On Ryan's 5th birthday he was ready for his new status in life. And so was I. But was he ready for the "Big Little Moment"? For five years I thought about this moment. And I dreaded it.

What is this "Big Little Moment"? It's the moment every parent of a child with dwarfism both dreads and wishes to come. And to be over. It's the big moment when the child understands that they are little. That they are different. And that their difference is for life. It's forever.

Ever since Ryan was diagnosed I was anxious about this moment. I feared it. Will he cry? Will he hate himself? Will he be angry? Will he have confidence? Will he still want friends? Will they want him? But the questions and worry faded as we gained understanding of Ryan's condition and as we got to know our sweet adorable son. We lived one day at a time and enjoyed every second. But the "Big Little Moment" loomed. And it did so for five years.

The "Big Little Moment" can be a punch in the gut. It can knock the wind out of a kid. Shocking them senseless and ending the world as they know it. I feared this more than anything. Sure, the thought of bullies makes my blood boil. And I'm saddened knowing that he has to endure countless physical, social and emotional challenges. But none of that has to matter. What matters is Ryan. And his ability to accept. Because as long as he loves himself and has confidence, the bullies and hurdles in life are meaningless.

So to avoid this shock and devastating blow, I spoke to Ryan about his condition before he could even hold his head up. And I haven't stopped talking since. Just ask Ryan. I'm guilty of talking so much that he's constantly asking me if I'm done so that he can go back to playing. I talk about how his short stature is a trait that makes him awesome. And I point out other people's differences and we talk about how that makes them great. I'm discussing the fact that he has a lot in common with his classmates and that being smaller doesn't change that fact. We watch little people tv shows and applaud their achievements. As soon as he was able to grasp a simple concept, I came up with the phrase "Little Big". It's a simple way to remind Ryan that little people can do big things. It's also how he shares and explains his difference with new friends.

Ryan's 5th birthday wasn't just another party to plan. For Ryan turning 5 was about self love and acceptance. Not exactly the typical theme for a 5 year old's birthday party. But at five years old, he is old enough to understand that he has dwarfism. And that he will be little for his entire life. He's tasked to grasp his life-long difference AND stand proud. This is a huge job for a five year old. And it's something that I thought about for five years.

And as a result of my constant babbling, Ryan gradually gained an understanding and awareness about his dwarfism. Ask him why he's small. Go ahead! He'll tell you that he's five and that he's "Little Big". Ryan knows he is little, but he also knows that little people still grow-up and do big things. And I'm proud to say that for the most part, he's content with this. He's happy.

Of course he has moments. And they break my heart. After all, self love and acceptance can't be a constant. And what a huge concept for a kid to have to learn and grasp. He's barely 5 years old and he's been given the task of understanding a life-long diagnosis! And on top of that, he's given the challenge to like himself with his difference. How many people without a difference can say this? Don't we all struggle with self love? And yet, it's what we tell him to do. It's what he needs to do. And it's exactly what he does. And I couldn't be prouder. Ryan stands tall in every way possible. Well, every way outside of the literal definition. And you know what? He stands taller than most.

Meet Ryan. He's Little Big.

Now, my baby is five years old. His name is Ryan and he has a form of dwarfism called Achondroplasia. It's the most common form of dwarfism. His dad Scott and I are both "average height" - meaning we don't have a form of dwarfism. It turns out, 80% of little people are born to average height parents.

Most families find out that their child has dwarfism during pregnancy. But in our case, we didn't know until weeks after Ryan was born. Getting a diagnosis with a newborn in hand made for a tough start. Scott and I were searching - and trying to understand - everything we could find about Achondroplasia. And we quickly learned why the doctor advised us to avoid "googling" the condition. There are over 200 kinds of dwarfism and even within the Achondroplasia diagnosis, there are extreme variations of complications, appearance, and experience overall. Our fears and worry only grew as we dug up information.

And in addition to that, Ryan was going through tests and procedures - so many that I honestly lost count of how many he had in his first year of life. Perhaps it was the lack of sleep. Or quite possibly selective memory preserving my sanity.

Here's Ryan and I after one of his sleep studies. For little people, breathing - especially during sleep - can be an issue. The sleep study sounds warm and fuzzy, but believe me it's far from it. The same amount of wires and and connectors are used for my infant as there are in an adult. Ryan's tiny body, entire head and face were covered with wires and connectors. He screams when the technician is hooking it all up - which takes almost an hour. It breaks my heart - which is why I have never taken a picture of him hooked up.

This is Ryan - all smiles of course - before an MRI. This test is done to check for spinal compression and/or hydrocephalus. This sounds non-invasive enough, but for an infant to receive an MRI, they are put under general anesthesia. And just like with the sleep study, I can't bring myself to take pictures in the moments that are difficult. Ryan has undergone anesthesia a number of times now, and it never gets easier. The fear and helplessness is horrible as you watch your baby fight the drugged sleep and then drift off.

These are just a couple of examples of Ryan's bad-ass ability to endure. Over the past five years it's been a revolving door with specialists, hospitals and constant watching. We've been lucky so far. Ryan has "only" had two surgeries: ear tube placement and tonsil and adenoid removal. The MRIs he has had over the years came up negative. He's dodged the CPAP machine because he had tonsil/adenoid surgery and since we've undergone routine sleep studies to watch. He hasn't had more than one set of ear tubes - though this is since when the first set fell out, they left holes. The future holds more challenges, it's just the way life is for Ryan. The eardrum holes will need to be repaired in the next year or so. And we will continue to watch for these and countless other complications that could appear over the next few years.

And yet, despite what it sounds like ... Ryan is not defined by his diagnosis. Being little is certainly part of who he is, but it doesn't dictate who he is or what he does. He has the most contagious smile, loudest laugh, bright blue eyes, huge imagination and biggest love of life I've ever seen. Ryan goes to school, plays sports, attends birthday parties, rides his bike, swims and has a three-and-a-half year old sister named Eleanor. Ryan makes friends easily at school and is the life of the party.

Before Ryan could talk, I talked to him endlessly about his stature. One of my biggest fears for Ryan is that he would be blindsided by his condition. I knew I had to start instilling confidence early. Once Ryan could understand simple concepts, I told him that he was "Little Big". This means that he is little, but can do big things. Ryan has grown to thrive being Little Big. He not only uses the phrase to explain his stature to new friends, he has learned to love himself for being Little Big.

Now that he is five year old, he's gaining an understanding and awareness that he is always going to be little. And thankfully since he's identified with being Little Big, he's transitioning to his new outlook on life as a little person well. He's even utilized Little Big to mean that he will be little when he gets older, but that he will still be a grown up and will do grown up things. Ryan's ability to accept himself for who he is blows me away. He's proud to be different in a world where people scrutinize their bodies and appearance. Instead of looking at what makes him different from everyone else, he's celebrating being little. Already, Ryan is wise beyond his years and a bigger person than most adults. This kid is going places.

Expecting Greatness and Getting More

Finding out I was pregnant is still a day I remember vividly. Don't we all? My husband patted himself on the back for a job well done and we both eagerly started anticipating the experience of pregnancy and having our first child. And just like many new moms I started reading everything I could get my hands on - what to expect during pregnancy, what to purchase for baby and how to prepare for delivery.

I'm a bit of the extreme when it comes to list making and preparing for both the good and the bad. So, of course we did it all. Classes on every topic imaginable, baby CPR/First Aid, books, websites, forums, you name it. We did it. And we had it all worked out in our minds. And when we found it we were having a boy, our expectations got more detailed and vivid. From clothes to sports teams we had a picture painted. And it was perfect.

Yet a huge surprised lurked underneath our picture perfect vision. We didn't even see it coming with the pregnancy hiccups I endured as I grew. Nor did we see it when labor wasn't close to ANY scenario we learned about. And we didn't even detect a hint when labor was suddenly full of complications. And we didn't see it when our sweet newborn was diagnosed with dual-ear infections at two days old.

Our expectations of greatness blinded us as the first weeks passed. Despite even more ear infections, extreme sleep deprivation, a diagnosis of colic and on and on. And then it happened. And the first time we heard the word "dwarfism" we let ourselves deny what was suddenly so clear. It couldn't be. That's not what we planned for.

Our sweet dreams of "perfection" slipped away and were replaced with lists of scary complications, invasive tests, countless procedures and the reality that our son would not experience an easy life. Tears of joy became tears of defeat and sadness.

The tears flowed for a few days. Until one morning at the hospital when my husband and I sat outside to feed our baby. And for the first time, we opened our eyes and looked around. We soaked it in. Other families came and went. And it hit us. These families have reasons to cry. So many complicated struggles and true loss surrounded us. But us? What loss? There's no denying that our son's diagnosis will be the cause of many complications in life. There will be medical, social and emotional challenges. But his life will still be full. He will experience all that he wants.

Sure, we expected something other than having a child with dwarfism. But the greatness that I thought was lost, was actually replaced with something better. Something that I didn't even know existed. Something more. And I couldn't be luckier.