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 would watch him when his parents went out. I adored him, spending time with him, watching him take longer to learn how to do things - but still doing them. 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 at the time — 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 started with a wonderful host family as well as two other girls and three boys my age under the care of one woman in her twenties - Dawn. We then moved to a farm where the boys and girls stayed in separate houses. There was a gorgeous pool, animals running around. 10 kids and one responsible adult from 5 additional different countries.

 

It cracked my world open in the best way. From admiring a pink military base, to trying Guarana, over beyond watching helplessly as the mountain was being deforested. Meeting complete strangers as a teenager and leaving as friends. Together we learned deep, valuable lessons about respecting each other's cultures, and saw firsthand how to communicate across language, ability, and background differences. I never knew singing perfectly in English can be incredibly misleading!

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What I didn’t know — what my family chose not to tell me in hopes to not ruin this 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 entire life, though short, 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 help pass it on.​