How to pronounce "stubbornly"

Two months ago, my kids and I huddled around a cell phone

watching the live stream of the Game Awards,

one of the video game industry's biggest nights.

They announced the nominees for the Game for Impact,

an award that's given to a thought-provoking video game

with a profound prosocial message or meaning.

They opened the envelope

and they read the title of our video game.

An award ...

for impact.

It was almost funny, actually,

because I always thought that winning an award like that

would have this huge impact on my life,

but I found that the opposite is true.

The big nights,

the accomplishments --

they fade.

But the hardest nights of my life have stuck with me,

impacting who I am

and what I do.

In 2010, my third son, Joel, was diagnosed with a rare and aggressive brain tumor.

And before that year was finished,

doctors sat my husband and I down

and let us know that his tumor had returned

despite the most aggressive chemotherapy and radiation that they could offer him.

On that terrible night,

after learning that Joel had perhaps four months to live,

I cuddled up with my two older sons in bed --

they were five and three at the time --

and I never really knew how much they understood,

so I started telling them a bedtime story.

I told them about this very brave knight named Joel

and his adventure fighting a terrible dragon called cancer.

Every night, I told them more of the story,

but I never let the story end.

I was just building up a context that they could understand

and hoping that our prayers would be answered

and I would never have to tell them that that knight,

who had fought so bravely,

was done fighting

and could rest now, forever.

Fortunately, I never did have to finish that bedtime story.

My children outgrew it.

Joel responded better than anyone expected to palliative treatment,

and so instead of months,

we spent years learning how to love our dying child with all of our hearts.

Learning to recognize that shameful feeling

of holding back just a little love

to try to spare ourselves just a little pain

somewhere further down the road.

We pushed past that self-preservation

because Joel was worth loving even if that love could crush us.

And that lesson of intense vulnerability has changed me ...

more than any award ever could.

We started living like Joel could live,

and we began developing a video game called "That Dragon, Cancer."

It was the story of Joel.

It was the story of hope in the shadow of death.

It was the story of faith

and doubt,

and the realization that a wrestle with doubt is a part of faith --

maybe the biggest part of it.

It was a story that began as a miracle

and ended as a memorial.

(Music)

(Giggle)

(Clapping)

(Music)

(Video) Dad: Bouncing around, do you like that?

(Giggle)

I love your giggle.

(Music)

(Giggle)

[A Journey of Hope In the Shadow of Death]

[That Dragon, Cancer]

(Music)

When you play "That Dragon, Cancer,"

you're transformed into a witness of Joel's life,

exploring an emotional landscape,

clicking to discover more of what we as a family felt and experienced.

It feels a little bit like analyzing interactive poetry

because every game mechanic is a metaphor,

and so the more the player asks themselves

what we as designers were trying to express and why,

the richer the experience becomes.

We took that vulnerability that Joel taught us,

and we encoded the game with it.

Players expect their video games to offer them branching narrative

so that every decision that they make feels important

and can change the outcome of the game.

We subverted that principle of game design,

collapsing the choices in on the player

so that they discover for themselves

that there is nothing that they can do that will change the outcome for Joel.

And they feel that discovery as deeply and desperately as we felt it

on nights when we held Joel in our arms praying for hours,

stubbornly holding out hope for a grace that we could not create for ourselves.

We'd all prefer to win,

but when you discover that you can't win,

what do you value instead?

I never planned to write video games,

but these moments that really change our lives,

they often come as the result of our hardship -- and not our glory.

When we thought that Joel could live,

I left the game designing to my husband.

I chimed in here and there

with a scene or two and some suggestions.

But after the night that Joel died,

the passion,

the possibility of sharing Joel's life through our video game --

it was something that I couldn't resist.

I started writing more,

I sat in on our team's design meetings,

I added more ideas and I helped direct scenes.

And I discovered that creating a video game is telling a story,

but with an entirely new vocabulary.

All the same elements of imagination and symbolism are there,

but they're just partnered with player agency

and system responsiveness.

It's challenging work.

I have to think in a totally new way to do it,

but I love it.

And I wouldn't have known that without Joel.

Maybe you're a little surprised

by our choice to share our story of terminal cancer through a video game.

Perhaps you're even thinking like so many people before you:

cancer is not a game.

Well, tell that to any pediatric cancer parent

that's ever taken an exam glove and blown it up into a balloon,

or transformed a syringe into a rocket ship,

or let their child ride their IV pole through the hospital halls

like it was a race car.

Because when you have children,

everything is a game.

And when your young child experiences something traumatic,

you work even harder to make sure that their life feels like a game

because children naturally explore their worlds through play.

While cancer can steal many things from a family,

it shouldn't steal play.

If you're listening to me and you're trying to imagine this family

that revolves entirely around a dying child,

and you can't imagine joy as part of that picture,

then we were right to share our story with you,

because that season of our life was hard.

Unspeakably hard at times,

but it was also pure hope,

deep love

and joy like I have never experienced since.

Our video game was our attempt to share that world

with people who hadn't experienced it before,

because we never could imagine that world until it became ours.

We made a video game that's hard to play.

It will never be a blockbuster.

People have to prepare themselves to invest emotionally

in a story that they know will break their hearts.

But when our hearts break,

they heal a little differently.

My broken heart has been healing with a new and a deeper compassion --

a desire to sit with people in their pain,

to hear their stories and try to help tell them

so that they know that they're seen.

On the night when "That Dragon, Cancer" won the Game for Impact Award,

we cheered,

we smiled and we talked about Joel

and the impact he had on our life --

on all of those hard and hopeful nights that we shared with him

when he changed our hearts

and taught us so much more about life and love and faith and purpose.

That award will never mean as much to me as even a single photograph of my son,

but it does represent all of the people who his life has impacted,

people I'll never meet.

They write me emails sometimes.

They tell me that they miss Joel, even though they never met him.

They describe the tears that they've shed for my son,

and it makes my burden of grief just a little bit lighter

knowing that it's shared with a 10-year-old

watching a YouTube playthrough,

or a doctor playing on his airplane with a smartphone,

or a professor introducing Joel to her first-year philosophy students.

We made a video game that's hard to play.

But that feels just right to me,

because the hardest moments of our lives

change us more than any goal we could ever accomplish.

Tragedy has shifted my heart

more than any dream I could ever see come true.

Thank you.

(Applause)