‘He would tear up every time he had to tell someone because he knew how much we’d hurt. It’s such a devastating disease.’

Mom and him are obsessed with each other. They met when they were eighteen. And they’re always hugging, and kissing, and dancing in the kitchen.

So we grew up around a lot of love. But Dad has always been more of the ‘Acts of Service’ type. Every night at 8pm, he’d come to all our bedrooms to collect dishes that needed to be washed. And he always took the morning shift.

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It was his job to wake us up, and make us breakfast, and pack our lunches for school. He’d use a little brown paper bag, and draw a heart on the front with our name inside. He made thousands of these bags, and they always included a stick figure drawing.

It might be a picture of me scoring a soccer goal, or joining a club, or getting a part in a school play. Sometimes it would be an inside joke of some sort. He especially loved to quote Disney movies. Mulan most of all.

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But we were never embarrassed. Our friends loved the bags too. Everyone loves our dad. When my sister’s friend decided to become a baker, he’s the one who tasted everything she made.

And when my best friend got benched on our soccer team, Dad wrote her a letter to build her confidence. That’s how he is with everyone. And he’s still that way, even with everything that’s happened.

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We began to notice the shaking at the end of last year. Then there started to be long pauses. And difficulty remembering. He was diagnosed with ALS, and the doctors have given him 2 to 5 years to live.

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He didn’t even cry when he found out. But he’d tear up every time he had to tell another friend or family member. Because he knew how much we’d hurt. It’s such a devastating disease.

It’s really painful to watch someone we love so much go through this. He still runs every morning — he wants everyone to know that. But that will go one day. And so will his voice. And so will his hands. I know he’s really scared of that.

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He doesn’t want to lose his hands, because that’s how he’s always shown his love. When my youngest brother graduated from high school this year, we made my dad his own brown paper bag.

We drew a picture of the three of us holding him up. And we wrote our favorite quote from Mulan: “The greatest gift and honor– is having you for a father.”

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About the author:
This story first appeared on Humans of New York Facebook page and is published here with permission. For more amazing stories and photography buy the book HUMANS by Brandon Stanton.

(If you wish to submit an essay (reflections on life), personal story (inspirational or humorous) or something that you witnessed that inspired you, please go HERE.)

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