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.