Silenced by the cord that fed me life in the womb.

Nurses, mom, dad, my sister, my grandmother, all peered over me in the bassinet as the doctor desperately attempted to free my airways of mucus to allow air in. To grant me my first breath.

Silence, save for the suck and squish of the nasal aspirator.

Worry and tension filled the air until at long last, I let out a cry.

I am here.

My name is Cody Dubeau. I am 24 years old and I have seen more doctor’s offices and hospital rooms than my entire family can count on all our fingers and toes combined. When I was 1 year old, after an operation to remove a hernia, I was diagnosed with Glomerular Polycystic Renal Kidney Disease (PKD). My kidneys don’t look or work like your kidneys. Instead of the typical bean shape, with a smooth exterior, mine are small, blob-like and covered in cysts. Millions of them. Far too many for laser treatment. I have been on a waitlist for a transplant for 23 years.

I need a kidney.

When I was 3, my parents divorced which left a large open wound that will take a lifetime to heal. My mom had to work a lot to make ends meet and where she was absent, my sister and grandmother filled the void. Whilst this emotional strain was heavy for everyone around me, I didn’t quite know what to do with it. I felt pain, yes. I felt sadness, yes. But it was a confusing mess that I didn’t have the capacity to navigate.

When I was 4, I was diagnosed with Global Developmental Delay. They think the cord wrapped around my neck at birth contributed to developmental delays in my brain. I didn’t talk much, using other cues to get the things I wanted or needed and I didn’t quite express myself as other children around me had. My bone structure was different, too, having not developed at an expected rate. School was very challenging with the added diagnosis of ADHD. I missed a lot of school for testing and assessments, and bullying.

I need a kidney.

In late 2014, I experienced my first seizure. After the Epilepsy diagnosis, I saw the doctor even more as they switched and tried different medicines and dosages, trying to find a combination that wouldn’t contraindicate with my kidney meds. It took a long time, and many seizures later, to finally find that balance. My last seizure was April 2021.

In 2016, my grandmother passed away. Another loss I couldn’t quite wrap my head around but watched as my family grieved. This loss, strained relationships within my family, moving to help my mom take care of my sick grandfather, and my illnesses, have all contributed to anxiety and a life of fear.

I need a kidney.

My kidneys sometimes surprised us, rising in function and giving me a break. Those were good times. I was permitted to enjoy chocolate cake at my niece’s birthday, eat salty chips and popcorn while I played board games and watched movies with my sister, and enjoy juicy strawberries at the beach in the summer. Not anymore. Lately, each doctor’s appointment has us shaking with anxiety. Driving, white-knuckled, to the QE2 waiting to hear how much the function has declined. Even in spite of painstaking efforts to eat healthier, move my body and take care of myself. Right now, I am in stage 5 kidney failure. My kidneys are working at a mere 11%. My mom and I have been preparing our home for a permanent dialysis machine that looks to be an inevitable part of my future, for life. The older I get, the more I understand. If I could just get a kidney…

For those that don’t quite understand people with special needs, we have value. We pray for normalcy. We pray to exist in the world, in our communities, in our relationships, in a way that makes people see our worth. We bring joy, in our own special ways, to our loved ones. We are not our disabilities. We are not our barriers, or challenges. We are more.

To get a kidney would mean I wouldn’t ever have to be on dialysis. It would mean that I wouldn’t have to worry. It would mean I could regain the normalcy I deserve and perhaps my independence. I could enjoy the foods I miss. I could exercise more without fear of injury in the wrong places. The insurmountable weight upon my shoulders, on my mom's shoulders, would dissolve. The sun would be brighter, my laughs more meaningful, and my medicine cabinet next to empty.

I need a kidney.