I was eleven when my aunt gave birth to my cousin Shawn — a tiny, premature baby with three holes in his heart and a smile that could light up an entire room. He spent much of his short life in and out of hospitals, learning to walk slowly, speaking only a little, but radiating joy in a way that made you forget every monitor and medical term surrounding him.

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Sometimes I babysat for him. I adored him. And one afternoon, I made a mistake that would change the entire course of my life.

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He wouldn’t nap. He kept wandering out of the room, over and over, and thirteen‑year‑old me — overwhelmed, inexperienced, and trying so hard to “do it right” — gently closed the door and locked it so he would stay in his room and rest. He finally fell asleep.

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When he woke up, I realized he had soaked the bed.

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My stomach dropped. I understood instantly:
 

He HAD been communicating.

I just didn’t know how to listen yet.

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That night, I sat with my aunt and asked her — at thirteen years old — what her plan was for his future. She told me something I will never forget: she would rather give him eight or nine years filled with family, joy, and freedom than eleven or twelve spent in hospital gowns and fluorescent lights.

 

She chose quality of life over quantity.
 

She chose dignity.
 

She chose presence.

 

A few weeks later, I left for Brazil on a rare opportunity through the Children's International Summer Village (CISV) — a month‑long international program where I lived with a host family and 10 kids my age from 5 different countries. Together we learned about each other's cultures, and saw firsthand how children communicate across language, ability, and background. And how singing perfectly in English does NOT mean you can speak a lick of it.

 

It cracked my world open.

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What I didn’t know — what my family chose not to tell me in hopes to not ruin a once in a lifetime opportunity — was that on July 3rd, 1998, while my plane was taking off, my three‑year‑old cousin was playing at the beach with his parents, brothers, and dogs. With a huge smile on his face, he sat down in the sand, then laid on his side, and passed away.

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I learned the news only after I returned home one month later.

 

His life was short, but it shaped everything that came after:

My understanding of communication.
My belief in dignity.
My commitment to listening beneath the surface.
My work with families, children, and adults whose needs are often misunderstood.
My mission to build systems that honor autonomy, humanity, and joy.

 

He taught me — without many words — that communication is always happening.

Our job is to learn how to hear it - together.

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Know Body Better exists because one little boy taught me the most important lesson of my life.
 

I’m just trying to pass it on.

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