We are all different, and we are all the same because we are all human.

Though I don’t have clear memories of this time, I know that I felt different as a very young child. It wasn’t one big moment; it was more of a gradual feeling. Everyone around me seemed to have more energy than I did, and there were things that set me apart, like having thickened drinks while everyone else didn’t think twice about what they were drinking. Other kids could run around long after I had needed to stop for a break.

It was upsetting sometimes. But it was also okay at the same time, and I think that’s something people don’t talk about enough. You can feel both things at once.

Moments That Made Me Notice

Primary school was where a lot of it started to sink in. Friends would ask me, “what is it?” about my disability, and I was always happy to answer, but their questions made me realise just how different my experience was. Sometimes I wished they would ask more questions, so I could practise talking about it and feel more confident if someone new asked me down the track.

Not all questions felt kind though. In Year 6, I had a kindy buddy who asked me, “why are you short?” He was little and didn’t have a filter yet, but it still hurt. I felt judged and inferior, even by someone younger than me.

There were moments of real joy too. We used to play a game called “Maya’s Ball,” and for a long time I felt left out because it moved too fast for me. That changed in my Year 5/6 composite class, when the Year 6s went out of their way to include me. It meant so much more than they probably realised.

I had a teacher’s aide with me most of the time, and I often questioned why I needed one. I worried it made other kids less likely to approach me. Sometimes I wouldn’t tell my aide where I was going. Once I even ran away from them! Having more freedom at recess and lunch was nice, but also scary. I didn’t always have someone to talk to.

I also got sick a lot, I missed chunks of primary school due to chest infections, and I questioned why my body worked so differently from everyone else’s. I couldn’t keep up with other kids swimming, climbing trees, or walking. I felt sad about that. I also had two different sized feet and wore AFOs (ankle and foot orthotics), and back then accessible shoes weren’t really a thing, so I just bought bigger sizes and spent ages every morning getting them on.

One day at recess, my skin went red and blotchy, which is one of my symptoms. A teacher on duty told me I must be sick and to go to sick bay. I didn’t have my aide with me. Moments like that are exactly why having an advocate in your corner matters so much.

High school felt even harder in some ways. I felt like no one wanted to be close to me because I was different. In primary school, kids at least asked questions. In high school, people kept their distance even more.

I knew my mind was the same as everyone else’s, I felt just as emotionally mature; but I struggled with learning and mobility. Things took longer to sink in and to remember.

By the time I was in high school, I started to spend more time with friends my own age. However, this was only during school hours. I felt less connected when my friends organised outings that excluded me. Even when I was invited, I found these experiences draining and anxiety-inducing because I didn’t have support workers to help me at that time. I wished I was more independent and confident.

I also struggled because some people seemed too nice around me, like they weren’t being themselves. That included some teachers. It made it hard to feel like I was really connecting with them.

On the brighter side, I love surprising people who don’t expect me to be able to walk, when I can. That never gets old.

At home, my brothers included me in so many ways. My older brother taught me how to ride a bike, which meant the world to me. But I also felt guilty on the days I didn’t have enough energy to watch their soccer games. I wanted to be there for them and sometimes my body just wouldn’t let me.

The Moments That Stayed with Me

One of my teacher’s aides from pre-school kept in touch when I went to school. She used to take me out for sushi train on the weekends, which I loved. But once she said to me, “I’m impressed that you never complain about not being able to eat ice cream or needing thickened fluids.” She meant it kindly, and I knew that. But it hurt, because deep down I was struggling so much more than I ever showed. That still happens now, people commend me for getting on with things, not realising how much is going on underneath.

I also met a friend when I was young who had the same diagnosis as me. We had things in common: dry eyes, tiredness, the nature of our medical needs; but we also had different symptoms. I couldn’t understand it. If we had the same diagnosis, why did I need thickened fluids and she didn’t? It was confusing, and it made me feel different, even from someone who was supposed to be “like me”. Now that I’m older, I have a different perspective: through our similarities and differences, what matters most is our friendship.

Working Through the “Why Me?” Feeling

The people around me, like family, friends, and teachers, always reminded me that everyone is different and unique in their own way. Over time, I started to see it for myself too. What makes people different is also what makes them special.

I still ask myself, “why me?” sometimes. It comes and goes. But I’ve also started asking a different question: if I didn’t have my disability, who would I be? What would I be doing?

When people tell me they’re sorry that I have a disability, I know they mean well. But it also makes me want to push forward and show what I’m capable of. One song that really resonates with me is I’m Still Standing by Elton John. I’m still here. I keep going. My disability doesn’t define me.

It took me a long time to figure out my purpose. I used to put so much pressure on myself and want to do more than I could manage. One of my mottos now is simple: one step at a time.

Making memories, dreaming, and hoping to inspire other people is what keeps me moving forward.

What I would Say to You

If you’re in a “why me?” moment right now, I hear you.

Everyone is different and that’s what makes us all special and unique. If everyone were the same, the world would be a much more boring place.

Life will have easy moments and hard ones. Challenges come and go. But if you are surrounded by people who love you, you can get through anything. Emotional support pets help too!

And if you need anything, reach out to the people you trust.

by Amy