Born Just Right Read online

  Sometime during elementary school, I was seeing a physical therapist about shoulder pain when I mentioned I couldn’t touch my toes. It hurt too much. It turns out, I wasn’t walking properly. My therapist told me I was holding my little arm to my side and not moving it when I walked or ran. That started hurting the muscles in my legs. People tend to think that my little arm and prosthetic are specifically the only things that I have to strengthen and work on, but it actually has an effect on my entire body! I had to relearn how to walk and run! I really had to think about moving both of my arms to get my legs working the right way. Wearing my prosthetic arm was another way to help remind me that I needed to move my arms when I walked. It took a couple of months, but I always remember to move both sides of my body. And when I run now, I’m really fast.

  BUT IT’S SO HARD, MOMMY: A NOTE FROM JORDAN’S MOM, JEN

  (FROM A 2013 BLOG POST; JORDAN WAS SEVEN)

  For almost all eight years I’ve written this blog, I’ve focused on Jordan’s health. Everything I do is focused on making sure she is strong mentally and physically. That’s why we’ve made a glorious return to occupational therapy to prevent periodic shoulder pain. Our recent appointments have shown Jordan’s left shoulder blade is weak and it could be to blame for some of her recent clavicle pain. Her shoulder also has some slight separation as well.

  Jordan has always been a piece of work during occupational and physical therapy appointments. Always. She acts goofy, she half listens, she challenges the therapist to the core. It’s a big reason why I worked with the same OT for most of Jordan’s life. She figured out how to deal with Jordan most of the time. Our new therapist is managing all of those personality challenges without the history. We’re trying really hard to make the most out of the hour we see her each week.

  During this week’s appointment, Jordan was introduced to four new yoga exercises. Initially she was really excited because I often talk about how yoga is great exercise. Now that the helper arm is back in play, we were able to work on some exercises that were really challenging. They hurt. The exercises required attention, focus, and using muscles in ways that hurt Jordan. Not end-of-the-world hurt, but enough that it wasn’t fun. Not. One. Bit.

  Trying to get Jordan to participate and learn the positions enough times for her and me to understand what was expected was a bit taxing. Jordan wanted to play, and working hard during therapy isn’t fun.

  But we did it. We survived another appointment.

  As we drove away, I asked Jordan if she understood why we go to occupational therapy. She said she didn’t know, even though we talked about it a few weeks ago. So I told her about limb-different teenagers and adults I’ve met who have chronic pain. Others I know deal with pain if they don’t exercise often enough. I explained to Jordan that my goal as her mom is to help her learn ways to stay strong and do whatever we can to prevent her from hurting a lot. A little bit of work can stop a lot of hurt when she’s older.

  “But it’s so hard, Mommy.”

  Oh, my heart. I know, baby. I reminded Jordan how a year ago, she couldn’t even run a couple of blocks with me. But we’ve worked and worked and she ran a whole mile with me without stopping last week. It took effort and hard work, but it got easier. I promised her that it will continue to get easier.

  That’s when she asked me what I did when I had to do yoga when I was little. And I had to explain that I didn’t have to do exercises like that when I was little. I have a different body . . . and I don’t know what it’s like to know that I have to work hard just to make sure I’m not in pain when I get older. But I promised her, and I mean this: I will be her cheerleader and helper every step of the way. This hard work will be worth it. It will.

  BUILDING ARMS

  I didn’t realize all the therapy and helper-arm-building was teaching me about fit, function, and design. It also taught me to speak up and share my opinions when something doesn’t feel right.

  I learned a lot because of my prosthetist. I’ve worked with him since I was two years old. My mom traveled to a couple of different places with me as a baby to get my helper arms. After doing a lot of research, she discovered an expert in Chicago. That’s when we started working with David Rotter, or Mr. David, as I call him. After working with him for so long, he feels like an extra family member to me.

  Building helper arms is work. My mom and I usually block off a week so I can go into the office for a few days, test the designs out over the weekend, and then spend a few more days finishing the work before we go home. Most people build helper arms and legs over a number of different appointments that can last for weeks or even months.

  Buying a prosthetic is not like buying new clothes or a coat. It’s a lot more personal. It has to fit really well, and you want to feel confident when you wear it. I get to pick how mine looks. Each time we build a new arm, I can pick the color and the themes that go with it. I used to put characters on my prosthetic, but now I focus on cool patterns and sometimes extra sparkles.

  We build a new arm every eighteen months or so. That’s when my mom and I travel to Chicago. We work in a medical office that’s in the basement of a city hospital. You have to check in with security guards and wait for a really slow elevator to get there. Each time, we get to work in an appointment room that’s for little kids. Because we visit for an intense week of appointments, my mom and I set up shop in that room. I bring crafts and books, and my mom brings her work computer. We try to have fun and be silly as much as we can.

  Beyond our appointment room, there’s an area where other patients meet with Mr. David behind closed curtains. It’s a long room where I’ve been known to ride my scooter. Sometimes, Mr. David introduces me to other people who are meeting with him. I’ve met other kids and adults with limb differences. But I also get to visit a special part of the office that not everyone gets to see . . . the fabrication room. That’s where Mr. David and his team work on building legs and arms and other things that help people. There are all kinds of machines and tools. It kind of feels like a combination car-repair garage and craft room. There’s also a big 3-D printer, a monster machine that takes a design on a computer and prints it out using really thin layers of plastic to form a real version of what’s on the screen. The fabrication room is full of legs and arms in different areas. There are also stacks of types of fabric, plastic, and foam. You can even find leftover fabric from some of my old arms in the collection.

  Everyone who works with patients in the office wears a medical coat. Other people sit in a small room at computers and work. It’s not a very big space, but a lot gets done in that room. Since I’ve gotten older, Mr. David lets me come in and watch him work on my arm and other people’s prosthetics. Last time, I even got to help him build my arm. I learn so much when I visit!

  Building a helper arm is slow. But you want it to be slow, because if I don’t get an arm that fits just right, I’m not going to wear it. Each appointment starts like the last. I get measured and then cast for my arm. Mr. David wraps my arm with fiberglass to get a perfect mold. That gives him the chance to design the arms around something that is shaped just like me. Using really special plastic, he can create a test socket. That’s where he can make a test arm and I can decide if it’s comfortable or not.

  I am really picky about what I like when it comes to helper arms. I don’t want my arm pinched, and I want the inside to be really smooth. Some of my arms have a harness that goes around my shoulder. That way, when I move my shoulder, the hand can open and close. The hands on my helper arm can look like hooks or even the shape of a hand. I don’t really need them to look real. It’s definitely more important that they help me with tasks. The hook hands have a way better grip than many of the prosthetic hands that look like real hands. There are times when I love having my arm look different. But there are other times when I just want to look like a two-handed person. If I could, I would rather just not wear anything. But when I need to, I want my prosthetics to feel good and look really cool. I’v
e learned what I like by working with Mr. David through the years. As I’ve gotten older, I’ve gotten better at telling him what I like and don’t like. Some of the things I like are arms that don’t weigh a lot. The elbow and hands need to be easy to operate. I also like the inside of the arm to not feel super tight—but it needs to fit well enough that it won’t slide off if I get sweaty. I can’t tell you how many times I’ve had a prosthetic arm built to help me ride a bike slip off because I was so sweaty! That will get you strange looks on a bike trail!

  On most of my visits to work with Mr. David, we stay with friends who live in downtown Chicago. That gives me the chance to experience city life. I don’t really have a lot of public transportation where I live, so I love being able to go all over Chicago using the bus system and the trains. The last couple of visits, I’ve brought a scooter, so it’s even easier to get around and explore.

  Some of my favorite experiences in Chicago happen when I’m not at a Mr. David appointment. During one of my recent trips, I played at several different playgrounds and met so many great new friends. Playgrounds are a great place to meet other kids when you don’t go to school in a city. The kids thought I lived in the city, and for some reason I thought that was really cool. I’m not afraid to admit I live somewhere small. But I also like knowing I can make friends anywhere, and they don’t think I’m strange.

  DAILY PROSTHETICS

  Building my arms is a lot of fun. But when I get home, I have to use them. I know they help my body and they can sometimes help me with specific tasks, but it can feel like a burden. When I was younger, I would wear my arm to school every day and keep it on until lunch. That gave me time to balance out my body and give my shoulder a break from using it too much, but I would be able to take it off before I ate lunch or had other activities. There was one time I left my arm out on the playground. It was kind of embarrassing when someone had to return my arm to the classroom.

  Have you ever looked at how your elbow moves? It doesn’t just bend. It also turns. Prosthetic elbows can do the same thing, but they are really big and take up a lot of space. Since a prosthetic elbow is super big, it can’t fit into prosthetics I wear. That’s because my little arm is too long to fit a fancy elbow. The only kind that works is attaching hinges to give a bend. It isn’t very natural because it can’t rotate. It’s kind of clunky and not super helpful. But I wear it a little every day because I know it helps my body. I also have specific hands that do specific tasks. My bike hand helps me hold on, and it also works really well with paddles when I canoe or kayak. I can do both without a helper arm. (But I’ll admit, I’m not an awesome biker without a helper arm.)

  For years I worked with therapists to use my arms better and to make sure my body was balanced. But these days, I only visit occupational or physical therapists when I have a specific pain or challenge. I focus more on sports and activities that keep me strong. No matter what, I know that using prosthetics my whole life has helped me stay healthy and learn a lot.

  My parents never really needed to change the house around for my limb difference. I do have a few adaptive pieces of silverware to make it easier to cut food. (One looks like a tiny guillotine that chops food around a fork.) I also need a smaller keyboard for some tasks at school. When it comes to clothes, I don’t get my sleeve altered—I just roll it up. We don’t buy coats or shirts that don’t roll up easily. It is always a bummer when I find something that looks really nice but doesn’t roll. It’s just little things that can be annoying with a little arm.

  3

  DON’T STARE, JUST ASK!

  I have my moments. You know, when you wish things were different? Mine hit when I am feeling quiet. I’ll admit, I have my hard times when I am tired of standing out in the crowd. I don’t want to be the person teachers constantly pick out when we’re all doing something wrong. I just want to melt into the background. But the older I get, the more I seem to stick out. I’ve had a chance to share my story, and that makes it really hard to hide. But there are still times when I just want to hide in my room, veg out, watch videos, and pretend nothing is happening in my world.

  I cried about my little arm for the first time when I was almost four years old. Even though my mom says she felt sad, she wasn’t going to stop me. She and my dad never tried to fix me—they knew they could only do their best to help me deal with all the challenges that would come my way. They have given me tools to help me, and some of those tools include lots of different hands. I’m grateful that my limb difference has offered me extra opportunities in my life. But sometimes I’d be okay if all the cool stuff would go away and I could hide and not be so different around everyone else. I think it’s okay to be sad sometimes, but I never let it hang over me. I’ve learned I need to stop and keep going, keep trying. Being sad all the time isn’t worth it.

  I’m not saying everything in my life is easy. But I find new ways to power through tough days.

  T-SHIRT POWER

  One way I push back on the things that make me upset is to find clothes that help me feel stronger. It all started when I went to a new dance class filled mostly with kids I didn’t know. During that first class, a couple of kids would not stop staring at me. They just kept looking and whispering to one another. It made me so angry and sad, especially since they weren’t even bothering to try to talk to me directly.

  I went home and talked to my mom about the kids. I was upset. I couldn’t figure out a way to stop the staring and whispering. I usually have at least one friend around who can back me up and say something to kids who are rude. But in this case, I didn’t feel like I had someone in that room who could help me. I also didn’t know the dance teacher very well. When I don’t have a friend to back me up, I sometimes will ask an adult to help. But I didn’t feel right asking her this time. I just felt uncomfortable, without many options to feel better in the class the next week.

  I have had the chance to talk to grown-ups who have limb differences, and they say you eventually just don’t notice the stares. I know there are times when I don’t see them either. But that just isn’t the case for me all the time.

  My mom and I talked it through, and we came up with a really great idea. What if I went to the next class wearing a shirt that said something about staring so others in the class knew how I felt? That’s why I had a shirt made that said, DON’T STARE, JUST ASK.

  I wore my DON’T STARE, JUST ASK shirt to the next dance class, and I don’t know if it made a difference to the other kids. But I know I felt stronger. I’ve learned that when people stare, it isn’t always a bad thing if they aren’t being rude about it. It’s natural to look at something you haven’t seen before. If a person is watching me or my family while we are doing regular family stuff, then maybe that person can learn something. I really can do almost everything a two-handed person can do. I just might have to do it differently. If people are too shy or nervous to come up to me directly, I hope by watching me and my family, they won’t need to stare next time. But I am much happier answering questions about my little arm than being around someone who is too uncomfortable to ask. I know not everyone feels that way when they look or sound different. But talking about differences makes me a lot more comfortable than whispers and staring. Plus, I hope I am able to help others learn about limb differences during these conversations.

  My mom and I have created a bunch of other T-shirt designs to help me and other people feel a little stronger about our differences. Since I was really little, my mom has dressed me in a shirt that says DUDE, WHERE’S MY ARM? The shirt lets us know if someone is going to be a friend. If a person laughs at the shirt, they will be someone you want to hang out with. If they are uncomfortable with it, we don’t have to hang out, and I’ve learned that their being uncomfortable is not something I can control.

  My favorite shirt we created is a drawing of horses and one unicorn. It’s a picture based on a story a mom commented about on Born Just Right. She says she tells her kids, “If you were looking out at a pastu
re full of horses and you noticed a unicorn, would you stop and look? Of course I would! I’d love to look at a unicorn. Well, kids with physical differences are unicorns. We stand out!” The shirt says CELEBRATE THE UNICORNS. I know I celebrate them every day. That shirt is probably why I love unicorns so much. They make me smile and feel strong.

  BASEBALL FIELD PARENTS

  Another way I try to change how people think about limb differences is by talking to grown-ups. I started getting good at it, thanks to all of Cameron’s baseball games. Like a lot of little brothers and sisters, I had to go to all of his games. I wouldn’t just sit in the stands and watch him play. I would hang out with my friends! During almost every game, there would be a younger kid who would come up to me and ask why I have one hand. Most of the time, I would be in a good mood and tell the kids how I was born this way. Most kids are okay with that explanation and move on. There are always one or two kids who just can’t imagine that what I’m telling them is true. I usually don’t think the questions are annoying. Remember—don’t stare, just ask! I really like it when kids ask questions. It just sometimes takes a longer explanation. Often, I’ve used the movie Finding Nemo as a way to talk about my limb difference to kids who don’t understand. In the movie, Nemo has a “lucky fin” that is smaller than his other fins. He’s able to do everything in the movie. That little clown fish is a great way to tell kids how I’m okay, just like him.