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.