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.