Who The Heck Is This?!

Last night before bed I went to Ryan's room to tuck him in just like I do every night.  But last night it wasn't my baby in that bed.  There was a strange kid snuggled in Ryan's race car blankets.  A kid with freckles, arm hair and that mature big kid face.  Who the heck is this BIG kid?!  Ryan is growing up.  He's turning NINE this year!  Time is flying by.

I've always been happy to embrace new stages and phases.  Though bittersweet, it's always exciting and fun to see what the new age brings.  Ryan's new ages and stages have allowed for some awesome experiences over the years.  School became tough but so rewarding.  He does presentations, uses the computer and the kid is easily better at math than I am.  Trips and new places are appreciated on an entire new level.  Family time is special and full of adventure.  As Ryan grew older, his understanding of the world around him expanded too.  We have a brand new person to share ideas and experiences with!   

But this time I'm apprehensive.  Ryan is entering the beginning of independence.  He's not going to be in the safety of our home anymore.  Mom doesn't make all of the decisions and she surely doesn't choose what the days will entail.  School.  Parties.  Visits at friends' houses.  I can't be there for every moment anymore.  Ryan and his peers are entering a new world of freedom.  They are not only away from home a lot more, but they are making more choices.  They are forming their own personalities and opinions.  Their world is changing from pure innocence to one that offers real life challenges and problems.  And Ryan is different.  He has dwarfism.  A condition that for some reason is socially acceptable to mock.  And I can't be there anymore.  I can't control the places he goes.  Or the the way interactions go.  I can't correct the things people say or repair Ryan's self esteem when he hears hurtful words. I can't control it anymore.  And it scares the heck out me.

I'm looking at him in his bed and he looks so peaceful.  He's safe and happy.  I wish for him to never have to leave.  But I know that isn't possible.  And it's not fair either.  He's truly an awesome kid.  He lights up a room when he walks in.  His friends love him dearly and don't bother to notice that he is small.  But when they do see his size, they embrace him.  They help him reach things.  They wait for him to reach the destination.  They celebrate him.  They don't see a joke or a person to mock.  They see their friend.  They see Ryan.

And though I am afraid of the world Ryan is entering, he has already shown me his ability to manage on his own.  He made his friends.  He works tirelessly to keep up physically and socially.  He's fast.  And loud.  And always making his friends laugh with him.  He is respectful to teachers and adults.  He's a good kid and he's going places. I'm proud of him.  Over the years we worked hard on this.  Since of course I've always known this day would come.  But it's crazy to see that baby turn into a big kid.  No more little boy cheeks.  No more tiny sweet smelling feet. It's time for body wash and deodorant! 

So now I have to learn to sit back and hope that my lengthy and nagging pep talks have really sunk in.  And stuck.   So he can take on what the world brings ... and go about his life how he pleases - with his friends, school and activities.  The challenges that are headed his way will hopefully be minor bumps without bruises.  But no matter how tough the world is, he knows that I'll always be there for him. 

It's Sinking In.

Ryan brought home a simple school project today. And I'll treasure it forever. I know I sound dramatic. After all, both kids bring home endless projects. And they both make me proud. They work hard in school and it shows. But this project goes beyond learning. Its simple words say more than a million words could say. His brief words explain his height. And his limitations. And they shout out pride. Ryan's self awareness and acceptance are sinking in.

The project started a sentence and Ryan was to complete it: "I'm unique because ...". This single school project was a just a moment in the day for Ryan. But it was monumental to me. Ryan stated that he is "Little Big". It warms my heart that he still embraces this term. It means so much that he can acknowledge his stature, while at the same time claim his ability to BE big. I still remember talking endlessly to him about being Little Big. It sunk in.

Ryan then notes that his bones grow slowly. He's never braved sharing facts about Dwarfism with his voice. And today he reminded me that a voice doesn't have to be spoken to be heard. This project is a wonderful illustration of Ryan's understanding. He is aware that Dwarfism makes him different. And he's sharing it proudly with this project. It sunk in.

Lastly Ryan writes that when he runs, his legs go fast but he doesn't go as fast as his peers. This is where I was especially struck. I have a tendency to talk a lot ... as anyone that knows me would agree. :) Ryan can most definitely attest to this ... especially when it comes to talking about his difference. Ever since his diagnosis, the biggest fear I have had is Ryan NOT knowing and/or understanding his condition. It broke my heart to think about him playing with peers without knowing his condition. It felt like a lie. And I couldn't imagine him getting blindsided with his diagnosis in early childhood. His world could unravel. So, as Ryan grows up, I have talked endlessly about his condition and what it means. The good. The bad. And the in-between. I have always hoped he heard me. Even though I don't blame him for tuning me out. And then he brought home this simple sweet project. He not only shares that he doesn't run as fast, but he also states that his legs are going as fast as they can. And though this limitation likely frustrates him, he's acknowledging that despite his greatest efforts, he falls behind. It sunk in.

So here we are. Second grade. My fear remains managed. It only lives in my mind. Ryan will continue to hear me go on and on when it comes to his limitations and his potential. I can only continue to hope - and talk - as Ryan grows up we can learn about his newest challenges and rise above the struggle. And I hope it sinks in.

Venturing Outside the Bubble

The other day Ryan said something that he's never said before. We were heading out to a friend's birthday party. And just as we were leaving he said, "If someone I don't know calls me a baby, I'll tell them that I'm 7." My first thought was pride. He still struggles with confidence and speaking up. But then I realized something. He's nervous. He's considering the fact that there will be kids he doesn't know at the party. We're leaving the comfort of his bubble.

Ryan is surrounded by the most amazing people. His family. And his friends at school. Our family friends. And our LPA friends. Ryan has worked hard at being the best he can be. And it shows. No matter where we go, he seems to make friends. He even makes friends with employees at our grocery store. His bubble is fully intact and he thrives inside of it.

It's rare that I consider the world outside of Ryan's bubble. This is partially because we don't often find ourselves needing to venture outside. As long as Ryan has some of his comfort with him, the bubble follows. Going to the park with friends. Swimming in the community pool. Family trips. His bubble is there for him. There's no need to look outside. This is a great skill we all have. We aren't looking for the stares. Or the pointing fingers when we go out. We are with our friends, or simply each other. We do our thing and we're happy. The bubble is intact.

We are lucky to have a strong bubble - it's the reason Ryan appears so confident. But there are a lot of times Ryan has to venture outside of it. More than I realized. The world outside of his bubble is giant. And it's scary. The weight of this unknown is quite a lot for a kid to carry. And he carries it everywhere he goes. Just one question about his height ... and POP. His bubble is burst. He's exposed.

In the past we enjoyed our ignorant bliss. And we often still do. Bubbles are protective and secure. Ryan is safe and happy. But as he's getting older, he is venturing out more on his own. Sometimes he's forced to when he is asked about his size. And sometimes he is looking out and wondering. He's starting to see the world outside of his safe place. He sees his friends getting much bigger. He has witnessed hurtful actions and realizes his own insecurities. And though his bubble has given him confidence and strength, he is going to venture outside more and more. There is a big world out there. And I wonder if he's ready for it. And if I'm ready for it.

I can hope that as Ryan ventures out, he will be able to use his bubble for support. A soft place to land when he falls. A look back at the confidence he is capable of finding. A lift up to reach the tools he needs when faced with challenges. He's grown so much living inside of his bubble. And even though he needs to venture out, I'm glad that it's still there for him. As it always will be.

Awareness Month From Ryan

It's Dwarfism Awareness Month! And it seems like a good time to share some words and thoughts from Ryan ... Though he has the most amazing friends and pretty much what one could call a "perma-smile" on his face, he is quite the anxious guy at times. And because of this, he isn't often able to express himself and answer questions that people may have when meeting him.

When Ryan is asked why he is small, he never has an answer. The questions paralyze him. He just stands in place like a deer in headlights. Even though the questions are asked nicely, he can't get the words out. He's not getting teased or harassed - or at least that we know of. (We have a tendency to "do our thing" without worrying about what people think). But there he stands. He is frozen in place. And it breaks my heart.

I want so badly for Ryan to share what makes him small. Because for the most part, understanding leads to acceptance. His lack of action frustrates me in the mom-knows-best sort of way. But, when I put myself in Ryan's shoes I begin to understand. Questions pop his comfort bubble. He's suddenly exposed and reminded that he is different. He doesn't want to be reminded. He doesn't want to answer.

I am still adjusting to this idea. To me, it's weird not to answer since it's quite clear that he is not the average 7 year old. And he is so often proud of being "Little Big". But this is how he feels right now. And I'm going to adjust to the fact that he is not ready to self-advocate just yet. I guess if it took me almost FORTY years to have some sort of advocacy, I should give him some time too.

And in the meantime, I have put together some of the questions that are often asked and answered them in a way that I think Ryan would. Who knows? Perhaps when he gets older he will find this to be a handy reference. I hope you enjoy the notes "From Ryan" :)

Why are you so little?

My bones do not grow exactly the same way that yours grow. I have dwarfism which makes my bones grow slower. I was born with this condition ... kind of like how you were born with a certain hair and eye color. 

What do I call you?

Some words about little people are unkind. The word "midget" really hurts my feelings. It is a word with many negative meanings.  You can say that I am a Little Person or that I have Dwarfism. And of course, you can always call me "Ryan"  :) 

Are your parents little people too?

No they are not. I am the first and only little person in my ENTIRE family. My mom and dad were VERY surprised to find out that I had dwarfism. Most little people (80%) are born to average height parents – just like me!

Will you be able to drive a car?

Yes! Most people with dwarfism can drive a car. Because I have short legs, I will need some changes made to the car so that I can reach the pedals. But that's it! Sometimes, I think that I might want to be a NASCAR driver when I grow up!

How do you reach things?

I am lucky and have lots of friends and family that help me! But I also like being independent. At home I have stools, handle extensions and a few pointing sticks that help me reach snacks, the sink and things like light switches. To reach things like chairs and couches, I have to do a little climbing since my arms and legs are short. But I manage quite well! I can even reach stuff that my mom tries to hide from me :)

Do you grow?

Yes I do! I just grow at a slower rate than you do. 

If you eat all of your vegetables, will you grow?

I have no idea. I don't like vegetables :)  ... but I do know that many people with dwarfism eat vegetables and they don't get bigger. So I think the answer is no. 

How tall will you get?

I am expected to grow to about 4 feet tall. Most people with dwarfism grow from about 2 foot 6 inches to 4 foot 10 inches tall. 

Do you like being a little person?

Sometimes I am proud to be little! It is special to have a difference to share with people. But sometimes it makes me sad and I wish I could blend in with other kids. Sometimes I can't keep up or even participate if it is dangerous for me. I don't like feeling so left out and so different. But I am lucky to have awesome friends. They like me for ME and I remember that when I feel left out. 

It's Our Normal

Sometimes people ask me if it is a struggle raising a child with a condition. It's a well intentioned question. It doesn't bother me and I usually answer by saying that its no struggle at all. Sure there are tough times, but when I glance at our life, I don't see a struggle. I guess you could say that I'm just used to it. You could say that being different is our normal. So it doesn't seem like a struggle. Or weird. Or anything really. It's just normal.

Clearly I often forget that we are different. Since if I think about it, it's likely not normal for a parent to have a "favorite anesthesiologist" or to know three genetic doctors and a bunch of specialists. And if I think about it, I could make quite a list of our adopted habits that we have come to know as Ryan grows up. But for us, it just seems normal.

It's so easy to forget. After all, he is a six year old boy. And a pretty typical one too! He has amazing friends, goes to school, is obsessed with cars, plays nonstop and even finds time to bother his sister. In fact, it's safe to say that unless he is sleeping, at school or watching NASCAR, he's likely throwing a ball. Up. Down. Up. Down. Again and again. And again. He's a pretty happy kid. It's easy to forget that he is different. I see Ryan. That's it.

Then there are days like today. I took part in a "rare condition survey" in which I was asked questions about life with a child that has a rare condition. I caught myself having plenty to share. Times like this are an interesting wake up call. Despite the fact that our normal works great for us, perhaps I need to consider what lies ahead. Unfortunately, Ryan's normal will always mean a giant world with things literally out of reach. It will be a life with stares and silence as he merely goes about his way. It could also mean medical challenges. This is when my answer to people's question could be answered differently. This is when I would be tempted to say YES. This sucks ...

However, it doesn't suck to take a kid to specialists. Really. It doesn't. Since, ultimately, it's for Ryan's health. And it doesn't suck to make changes around the house for him. So we have a stool obession and pointers next to bathroom lightswitches. No biggie. It doesn't even suck when he can't partipate in some of the things his friends do. Ok, maybe that sucks a little. Yet, he manages.
But it DOES suck that I have to teach my six year kid how to handle the cruel. That his happiness relies on confidence and a thick skin. And it sucks that his five year old sister bears the weight of these challenges too. So I guess I could answer that it does in fact suck. But why? What is the point? In all of the questions I answered today I heard myself share the rough stuff. But I also heard myself tell what followed the challenges.

Ryan may turn heads from time to time. That doesn't have to be a bad thing. In fact, we meet a lot of nice people when we are out and about. And sure, Ryan has met some unfortunate opinions alerady in his life, but he sure weeds out those that aren't exactly "friend material" in a hurry! Our friends are proof of this - we couldn't be luckier with the amazing group of friends we have in our life. And yes, Ryan has had some tough times medically. But it all resulted in a healthy and thriving six year old.

So, maybe it IS a struggle to raise a child with a condition. But my answer remains. Nope. Nothing too rough. Nothing exceptional either. Our life is normal. Just how we want it to be.

Independence vs. Etiquette ... Do We Have to Choose?

I never knew how much I took for granted until Ryan came along. And I'm not referring to pre-motherhood luxuries like going to the bathroom alone, sleeping past 6:00am and hot coffee. I'm thinking about the endless list of things that challenge a person with dwarfism. The hurdles are everywhere. They are the stairs at school, the shelving at the grocery store, public toilets (ugh), light switches at home, the bank teller's counter, and on and on. The world is not made for a person with dwarfism.

And, unless you know a little person it may be hard to understand the difficulty. Unlike those are that simply short, little people have arms and legs that are extremely limited in length. Ryan has surprised many when the boost from a stool doesn't help him reach. But regardless of the difficulty, Ryan always finds a way. His determination and will make me so proud. What a strong and independent boy! I was proud of us both ... until a recent conversation I had with his school.

As Ryan has grown up into a little boy, I have been eager to give him the tools and mindset to find his independence. Together, we made the giant world something that he could reach. I figured it a job well done when Ryan managed to reach something on the table, shelf or counter. I have stood by his side proudly witnessing him climb, tap, shake, roll, push ... you name it - until he succeeded in reaching some place or thing. These behaviors seemed normal and even good as I watched Ryan do things on his own. Until my eyes were opened during my conversation with his school. There is a HUGE gray area when it comes to Ryan's independence and proper social etiquette. Many methods Ryan has come to utilize in using and reaching things, are quite odd and even rude in some cases. Have I been blind to this all along? Did I encourage Ryan develop inappropriate social behaviors? Unfortunately, the answer is yes. But do we have to choose him having either his manners or his independence? I sure hope not.

As a mother, my job is to encourage and ensure that my child is able to manage life independently. But when that child has dwarfism, he is going to adapt and manage in ways that aren't typical for most. When he was a baby, this was evident in his "army crawl" vs the typical crawl on all fours. For Ryan, the army crawl was a giant success! He found a way to move! But as he aged, his adaptations morphed into behaviors that aren't typical - or encouraged at all.  But when I take away the fact that he is a little person, when my blinders come off, I see it clearly. Leaning your entire torso onto the dining room table to reach your beverage is not ok. I imagine myself doing the same thing at a restaurant and I see just how odd and appalling this act can be. It's time that I remove my "mommy goggles" and start seeing Ryan how the rest of the world would. This is when I realize that adapting is not a hall pass for poor etiquette. But do I have to choose manners over independence?

What a juggling act this will be - Ryan needs his independence. He deserves it like everyone else. But he also deserves to be respected and admired. And the guy that lays across a table to reach the salt, isn't likely to get invited to many dinner parties :(

Ryan and I have a new task as he concludes his Kindergarten year. We are going to find ways to manage hurdles with strength, pride and consideration for those around us.  First, Ryan and I will locate needed tools that enable him to act without assistance so that he may maximize every opportunity to do things on his own. And next I need to accept that his asking for help doesn't have to equate to a failure for independence. Obtaining needed help is a powerful act of self-awareness and confidence. But most importantly, Ryan will never apologize for doing things differently. Being different does not equate to poor manners. But it also isn't a reason to do as we please. I believe this. And I think Ryan can too.

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.