My health journey started when I was born 26 days before my due date. I was diagnosed with mosaic trisomy 16, a life-threatening genetic abnormality and had extra holes in my heart. I spent a month growing in a baby incubator, growing from 3 pounds and 6 ounces at birth to 4 pounds. 5 months later, I went into heart failure. After open heart surgery, heart block and a permanent pacemaker, I finally went home. When I was a kid, I had skull reconfiguration surgery, got hospitalized with pneumonia 3 times and got my second pacemaker.

I was 10 when I realized my hearing journey had begun, as I struggled to understand what was happening because I couldn’t hear the teacher. Social cues told me it was time for the gym. My mom once told me she noticed I wouldn’t reply to her when it was dark, and I couldn’t speech-read. It wasn’t until I was 12 that I got a hearing test, and the audiologist said I needed hearing aids; that’s when I knew that everything made sense. I was relying on social cues and my peers in my desk group more than I realized. I was accommodating myself and asking for help before I knew there was technology to support me.

At school, after entering middle school, I took charge of my life, safety, and accommodations. Since I had heart surgeries when I was young, I couldn’t play contact sports, due to the adhesion being delicate in my heart, and I couldn’t always hear the teacher. Advocating for myself became a daily routine, from friends to teachers and family. I sat at the front of the class, I asked peers to repeat what they said, and pulled my friends ahead when I couldn’t keep up with the speed during school trips. I came to understand that the only person who truly understood my body and health was myself. I couldn’t rely on my parents to know what was going on with me all the time.

I was fortunate to have the support that I did growing up. I went to heart camp and Deaf/HOH camps, which made me feel less isolated in my disabilities. My parents have done everything they could for me- supported me in my education and helped me get what I needed. I eventually left gym class- what was I learning sitting on the bench? During COVID, the teachers were thrilled to have received clear masks, which allowed me to speech-read, and that was very helpful. My time in high school ended during COVID (and yes, I’m still bitter I didn’t get a prom, lol). Still, I got to hold one of the three leadership positions available at my school as the Senior Editor of the school yearbook, which made me confident that I could handle anything a non-disabled student could. From finishing elementary school with below-average grades to graduating high school with honours and an award for academics and leadership, I know that I can accomplish anything I want in life.

What followed high school was rejection and ableism, experiences I hadn’t encountered as much when I was young. Despite this, it has made me even more grateful for organizations

like the Canadian Hard of Hearing Association. Having the opportunity to come back for my second summer with CHHA reminds me that I can and deserve every opportunity, as long as I fight for it, just as I did when I was a kid.