Born Just Right Read online

  To every person who helped us grow and learn . . . especially Dad and Cameron and everyone who was born just right

  INTRODUCTION

  If you could be any type of superhero, what would you become?

  My name is Jordan, and that question took me in directions I never could have imagined.

  That’s because when I had the chance to become a superhero, I became a brand-new one . . . a hero who could look beyond my physical difference and use it to my advantage. I discovered a fun project that gave me my own kind of superpowers. I found a way to combine glitter and 3-D printing to create something so fun, even someone who doesn’t like glitter will smile. (My mom was never a glitter fan, but she lightened up a lot.)

  I always say there are too many books about physical differences and not enough stories that just happen to include a person with a physical difference.

  This book is about me. I was born with one full arm and one short arm that stopped growing just above the elbow. And my story is about pushing beyond what’s “normal.” It has adventure, creativity, and lots of glitter. My limb difference doesn’t define me, but it has given me so many opportunities to see the world in a different way.

  I’ve had a chance to meet so many amazing people and travel to different parts of the country, learning about the disability world and so much more. I’ve learned to be physically and mentally strong, thanks to years of occupational and physical therapy, but also because of sports and other activities! I’ve attended an amazing summer camp for kids with limb differences since I was three years old. I’ve also had the chance to meet kids across the country through a website my mom launched when I was a baby. It’s called Born Just Right because my family always says I’m “just right,” and I was born with “just” a right hand! (That usually makes people giggle when they hear that play on words.)

  I’ve also learned how powerful I can be, especially when it comes to thinking outside the box and introducing my ideas to the world. I believe I can do just about anything (other than monkey bars), and so can you!

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  BORN JUST RIGHT: MY BEGINNINGS

  My parents didn’t know I had a limb difference before I was born on December 29, 2005. Doctors say the circulation in my arm didn’t work properly while I was growing. That’s why I was born with a left arm that stopped just above the elbow. I’ve never known a life with two hands or two elbows, so it seems totally normal to live a one-handed life.

  My birth story is pretty sweet. Mom says she noticed I was born without a hand before anyone else in the room. She asked if I was okay, and the doctor said I was fine. Mom looked up at my dad, and they both agreed. My parents had never even seen a person with one hand until they met me. What’s cool is that they didn’t freak out about it. Just like the doctor said, they knew I was fine. My family has never treated me any different from how they treat my older brother, Cameron. Instead, they have all encouraged me to figure it all out.

  Which is a good thing. That’s because I’m pretty stubborn. I like to take care of things myself! For example, I learned how to put on my socks and shoes when I was really young, in preschool. I remember one time I was in a toddler dance class and all the other kids needed their parents’ help. I shocked everyone when I sat on the floor and shouted, “I DO IT!” I stuck my toes into my socks and worked my feet in with one hand. I might have been a little slower, but I didn’t need or want help!

  That stubbornness gets me in trouble sometimes, but I think it’s also why I can think up ideas to solve a problem that might be easier for someone with two hands. There aren’t a lot of people around me who have one hand, so I often have to figure out two-handed things my own way. That usually means trying and trying different ways until I find the one that works. Besides putting on my own shoes and socks, zippers and buttons were also tricky for me when I was little. I learned quickly that even though I might have failed at my first attempt, if I kept trying, I would eventually find the answer. I feel lucky my family didn’t step in and do it all for me, or else I probably wouldn’t have so many big ideas! My parents say they would have to bite their tongues to keep from offering help sometimes when I was little. They knew I could figure out a lot of things just by having enough time to solve a problem. I walked when I was ready to walk. I had my own technique for putting on clothes and shoes. I didn’t always learn those skills at the same pace as kids with typical bodies, but since my parents didn’t do things for me, I found my own way. They were teaching me how to be a problem-solver without even realizing it!

  I went to a day care center when I was a baby and moved to a preschool when I was a little older. I was the only one-handed kid anyone had ever met. But we were growing up together and learning things together. I didn’t get teased because the kids were used to me. And there’s something about little kids. They seem to get used to someone who looks different faster than older kids do. But no matter what age I am, there are some things that take me longer to learn. In preschool, that was super obvious. My teachers didn’t know how to give me one-handed tips. I did have a therapist who came to school to help me work on those tricky things that we call “life skills.”

  Life skills are also challenging when it comes to meeting new people. I attend public school, and that means I meet new people all the time. When I started in kindergarten, kids weren’t used to me. My mom made a little picture book that the teachers would read at the start of the school year that showed off all the things I can do. We showed a different version of the book every year until fifth grade. It was a really easy way for kids to see for themselves how I could do a lot of cool things. The book also helped kids know that they had to ask before they touched my little arm. It looks different, so some kids think it’s a great idea to grab it and see what it feels like. The problem is, I don’t like being grabbed. (Who does?) The book helped kids feel comfortable around me and taught them to respect my personal space.

  These days, I really don’t like that book. I know it helped, but that book just reminds me of the harder times when kids weren’t used to having me around school. As the years went on, I made more and more friends. They learned that just because I’m different, that doesn’t mean I’m scary. I can still be a really good friend. I don’t plan to do anything special to introduce my difference when I start middle school, or even when I start high school. People are going to figure out I’m okay just by getting to know me first.

  A little book didn’t stop all my problems at school. There were mean kids on the playground. (I wasn’t afraid to complain about them to my principal.) There were kids who would whisper or stare as I walked by in the hallway. I had strange experiences in my after-school program. But most of the time, the kids would learn how my disability might look different but that I didn’t let it stop me from doing my best.

  MY FAMILY

  My family is a big part of my life. My dad is a journalist who runs a television newsroom. He also teaches at a university. My mom also works at the same university, and she does cool work on websites and helps different organizations. My brother, Cameron, is four years older than I am, and I think I can do pretty much everything he can do. Actually, I think I can do more than he can. My parents are always reminding me that I’m younger, and that drives me crazy. I really don’t consider us to be that different.

  Cameron has always wanted to help me. Growing up, my mom had to remind him to let me figure things out and do it my own way. The story Mom always uses as an example is a time when we had a homemade sandbox in our backyard. It had a wood side that I needed to climb over to get into the sand. For some reason, that wasn’t really easy for me to do. My mom says she remembers physically holding my brother back to keep him from helping me into the san
dbox. She wanted me to find a way to get in all by myself. My brother tells me that it made him super angry. He always wanted to help when I was small. I think he still does at times. That’s probably why he and I butt heads often. We both think we can do everything better than the other.

  I grew up (and still live) in Columbia, a small city in Missouri. We live in a house that is kind of magical. That’s because it is next to a small lake that gives us a chance to enjoy swimming in the summer and beautiful sunsets all year. I love sitting on our dock and dangling my feet into the water. There are lots of fish and ducks and geese that hang out around the lake too. It’s just so peaceful. I think my bedroom has the best view of all the rooms in our house. I can sit on my floor, read books, and stare out at the lake forever. I am so lucky to have a home that feels peaceful, even if my mom and dad are always trying to get me to keep it clean!

  I have grown up with dogs in the house. These days, we have a huge black goldendoodle named Bailey and a gray Weimaraner mix named Blue. I think they are the best dogs in the world. I love cuddling with them when they aren’t running around playing catch or barking at dogs or other animals. They are a big part of my family too.

  We don’t live close to any other family members, and we only get to see them for a little bit each year, so the four of us do a lot together. We do a lot of traveling. My family also goes to football games, basketball games, and music shows together. We have college football season tickets, and that gives us an excuse to tailgate a lot in the fall. Tailgates are when my parents set up a tent and a grill near a parking lot before football games. We hang out there for hours before going to the football stadium. We get to see all kinds of my parents’ friends. I even get to have my friends join me sometimes. We also have a lot of fun with everyone when there are big music festivals or when we want to have a lot of people over to our house.

  These days, my parents also go to a lot of my and Cameron’s activities. I used to dance a lot. Recently, I was involved in sports, including cross-country, track, softball, and basketball. I take piano and voice lessons. I am also part of a Girl Scout troop. I love trying everything out to see what I like. I guess I’m still figuring out my favorite activities. I don’t feel like I have to pick and choose just yet.

  DYNAMIC DUO: A NOTE FROM JORDAN’S MOM, JEN

  Jordan has always sparkled. Even before she started shooting glitter. People would walk up to her when she was a baby and notice a little extra shine in her eyes. It’s like she was always ready to change perceptions from the start.

  Jordan and I are a team. I’m also her mom, so I have to do mom things (like say no sometimes). But we also have a relationship that is a little different because we travel and experience so many things together. First, we were together all the time when she was a baby. I didn’t know what extra things I needed to do for her when she was born, so I took her to a lot of doctors’ appointments. We traveled out of state often to build prosthetics starting when she was ten months old. We attended extra summer camps and events for kids with limb differences starting when Jordan was three. Her brother, Cameron, is four years older, and he got to come along with us sometimes. Their dad (my husband) would attend these events when he could. (My jobs have been a little more flexible through the years.)

  I gave Jordan space to find solutions to her challenges. Maybe it’s because I talked to so many other parents of limb-different kids. I knew that I needed to step back and give her room to learn. That’s really hard when you see someone you love struggle. But giving her the chance to discover solutions has also given her brain the space to think up different ideas and have very strong opinions of her own. Yes, that means there are times when we argue. But I often realize she’s a lot like me: strong-willed, confident, and willing to take a stand on issues that matter.

  When Jordan was a baby, I worried about what she couldn’t do. I had never experienced the world outside a typically formed body. Every time she figured out a new task, I felt a little less worried. These days, I never assume there is a “can’t” in Jordan’s world. She can do it all, with or without a prosthetic arm helping her out.

  I used to be a journalist, and I documented my experiences with Jordan as she’s grown up in an online blog. That gave us more opportunities to talk to and meet kids and families across the country, and even around the world! It’s a gift to get to know so many people and learn from their life experiences. While Jordan and I can share the lessons we’ve learned through the years, it’s exciting to learn from everyone else at the same time.

  Watching Jordan speak up for issues that matter to her was not something I expected as I’ve watched her grow. But she and I both committed to each other that we would do what we can to help others who may not have the same opportunities that have come Jordan’s way. I am proud to be by her side as she shares her thoughts and opinions of the disability world. We wouldn’t be on this adventure if she wasn’t in the lead.

  WRITING EVERYTHING ONLINE

  When I was younger, my mom wrote a blog about me. That might sound a little creepy, but it helped me meet a lot of amazing people and go places I never would have gone. She says she was reporting about our lives so we could help parents of limb-different kids. As my parents figured out what I needed to be healthy and confident, others got to use our experiences as a resource.

  I haven’t read all of my mom’s posts. I know she didn’t always know how to help me when I was little. She spent a lot of time asking a lot of questions to other parents, doctors, and therapists. She and my dad learned that the best way to help me succeed was by encouraging me to try new things instead of coming up with solutions for me. My mom wrote how she thought it was a good thing I was so cute, because I was so stubborn, it drove her crazy. It took me years to figure out how to tie my shoes. One day, it just clicked. I had tried so many different ways, but then it finally made sense to me. I use a combination of my hand and my little arm to get it done. I wouldn’t let my mom help me with putting on my clothes. I had to figure out how to get the toothpaste on the toothbrush. I was going to put that seat belt on, darn it! I’m really glad my parents gave me room to learn, even if I made it hard on them. My mom told me there were a ton of things she and my dad didn’t think I could do when I was born. But she never told me her doubts at the time. She only told me how she felt recently. I’m so glad she kept it to herself. If I’d known about the doubts, it might have made me less confident.

  Two-handed people with typical bodies just don’t understand what it’s like to live with a physical disability. They assume everything we do each day needs the help of a traditional body. But think about it. A lot of things are possible if you shift your perspective. My perspective is one-handed. Nothing intimidates me. I like challenges. But I also like access to tools that can help me when I need them.

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  HELPER ARMS

  Growing up was a little different for me. I got my first prosthetic arm when I was ten months old. I call prosthetics “helper arms.” My first helper arm wasn’t super easy to use, but it helped me build muscles. Strangely enough, that was just what I needed with that old arm. I was born with weakness in my neck and torso. That meant I had a hard time sitting up on my own. My first helper arm helped me get stronger. I have always traveled out of state to get prosthetics made. (My parents tried to build one with a company in my town, but I grew out of it in a couple of weeks. My mom wasn’t going to go through an experience like that again.)

  I’ve used helper arms for most of my life. Today, my helper arms still make me stronger and help me do specific things like hold on to a bike handle or do push-ups.

  They haven’t been super “handy,” but they have helped me stay healthy. Helper arms have also trained my body to know what it’s like to have two hands. Think about your arms. If you have two shoulders, two elbows, and two hands, you probably don’t pay a lot of attention to how they work. But if you watch how you move, you’ll see that you move your elbows a lot more than your shoulders. I
use my left shoulder like an elbow, so I sometimes overuse it. My prosthetics give my shoulder a break from all that extra work. My parents are constantly worried about me overusing my shoulder, which could cause other physical issues later on.

  Besides the practical use, wearing prosthetics means I get a chance to show off my sense of fashion and design. Ever since I was little, I’ve had a chance to decide what kind of “skin” I want with my helper arms. I’ve worn a Disney Princess arm, a Hello Kitty arm, and lots of others with pretty colors, including blues, greens, purples, and even a sparkly blue.

  THERAPY

  Even though I was determined to do things my way, some things were not easy for me when I was little. I took a really long time learning to walk. Instead, I would scoot around on my butt. I was really fast, but it wasn’t the most efficient way to get around. My parents called me “Swiffer Butt” because I was always cleaning the floor as I moved, just like a mop. My body just needed to do things a little differently from some kids.

  Up until I was in third grade, I saw a physical and occupational therapist every week. My therapists helped me build muscles and figure out tiny tasks that might be tricky with one hand (or tricky with one hand and a helper arm). Think about opening those milk cartons they sell at school. Or opening a juice pouch. Try opening a potato chip bag with one hand, without your teeth! (My mom doesn’t like me opening anything with my teeth.) Those are just a few skills I would work on so I didn’t need to ask for a lot of help in the school cafeteria.

  All the hard work I did when I was little made it easier to participate in other activities, like soccer (which I don’t like) and dancing (which I love!).

  Now, I’m a really active kid, but prosthetics aren’t helpful for me to wear all the time. They can feel like they’re in the way or they don’t really help with a specific activity. Since I can’t—and don’t want to—wear them all the time, physical therapy is a good way to keep an eye on any damage I might cause my body. I have to visit a physical therapist every once in a while to make sure I’m not causing serious damage. I know one-handed adults who needed major shoulder or wrist surgeries because they didn’t listen to their bodies when things hurt from overuse. Outside of therapy, I try to work out with my sports and with weights when I have time to go to the gym. I learned a lot of adaptive workouts with a really great CrossFit Kids coach. I also try to follow some yoga and Pilates exercises. Keeping my core strong is a really great way to make sure I’m healthy.