Gleason Page #9

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because it's depressing.

I don't want to think

of these things.

It's finished.

What's that called?

That's beautiful.

It's called "Commotion

of Colors In Motion"?

Yes.

You have to give

your--

Ooh. Ooh. Okay.

And that's called

"emotoling"--

emotion doodling.

Emotoling.

Emotoling?

Emotoling.

Emotional doodling.

Emotionally doodling.

Okay.

I like that.

Oh.

The dilemma is, ahem,

obviously we want him to live,

and the longer he lives,

the harder it'll get.

But-- And-- And for her,

it's realizing that

the longer he lives,

the longer she has

to deal with this,

so it's just-- It's tough.

RIVERS:

What's that?

That's a-- That's

a trach and a vent.

Because guess--

Remember what Dad has--

Daddoos has? ALS.

Remember?

Happy birthday, dear Rivers

Happy birthday to you

Blow 'em out.

[APPLAUSE]

MICHEL:

You have to

blow harder, Rivers.

[CHATTER]

[CHEERING]

Last two.

All right,

Rivers.

It's not a yay yet.

He's a chicken.

[LAUGHTER, CHATTER]

I want you to

finish strong.

All right.

[CHEERING]

[CHATTER]

RIVERS:
I got--

Rivers,

did you make any

new friends today?

No. I didn't...

Did you play

with Goren today, bro?

No!

He had fever.

[MICHEL CHUCKLING]

Can you count

to October 19th?

One, two,

One, two,

three, four--

Three.

Four, five, six, seven.

Oh, one, two, three, four,

five, six, seven.

My second reading

of "The Little Pea."

I'm excited for the day

when you are

teaching me things.

As a father, my goal

is for you to be--

To-- To teach you

to think for yourself,

and there's a downfall

to that

that eventually you'll

be thinking things

that are different

than things that I think.

In the weirdest way,

that's the goal,

but then you don't think

the things that I think,

and we have disagreements

or debates or, um,

differing opinions.

So my point is that I'm

saying now to you

that I am excited

for that day,

even if, when that day comes,

I'm frustrated.

Okay, tough guy,

so what kind of questions

are we going after here?

Four years ago, we had

a similar conservation.

What has been the most

challenging moment for you

since my diagnosis?

Uh, having to deal

with the day that you die.

Well, you asked me.

And I ask myself why--

You know, why did it have

to happen to Stephen?

But a simple answer for me

is, I mean,

it's the way

you played, Stephen.

That's why those coaches

loved you--

Because you were just

relentless.

We've had a couple

on-camera moments

talking about

our spiritual beliefs.

Do you feel at peace

about that?

I was talking to you

about some things,

and you were starting

to lose your voice,

and you says, "Dad,

don't worry about my soul.

My soul is saved."

And I don't think you could

speak that out of your heart

if you didn't really believe

that your soul was saved,

Stephen.

So I believe

your soul is saved.

If you could go back,

what would change about your

philosophy of fatherhood?

Oh, man. Uh,

probably being gentler.

Uh, I'm sure I could

have worked a little

smarter at things.

I think you did well.

Well, thank you.

I think you've taught Rivers

more about love and gentleness

and kindness at an early age

than I even knew about.

But it's pretty cool

to watch how you sing to him

on that, uh, computer

and get him in your legs

and he rolls around with you

and you say

bedtime stories to him,

and it's pretty awesome,

Stephen.

Rivers feels all of that

in his heart.

Some day he'll walk through

that Saints locker room,

and he'll see your picture

on that picture Hall of Fame

for the Saints,

and, you know,

he'll walk to the stadium

and see his dad's statue,

and, you know.

I just hope he doesn't feel

like he has to try

to accomplish as much as you.

All I know

is that you wouldn't put

that kind of pressure

on him.

RIVERS:

Go! One, two, three.

A year from now

We'll all be gone

Hold this. Come on.

All right, Dad,

let's do it.

And they're

going to bed...

[LAUGHTER]

Go! Say "Go, Daddoos, go."

Go, Daddoo, go!

My friends will be gone

I think his main purpose

now is,

you know,

being a dad for Rivers,

the best dad that he can be.

Nothing is as it has been

And I miss your face

like hell

I've lost a little bit

of the happiness and light

that was a big part

of my personality,

and I'm trying to find a place

where I can get that back

because I think it's important

because it's a big part of me.

I think of having a show

at some point.

That's way out

of my comfort zone,

and I'm, uh, I'm not

there quite yet.

Yeah. Being an artist

is just, like,

kind of complicated.

Luckily, I'm not an artist.

I think I'm better

than last year,

and so next year

might be even better.

But this is a motherf***er.

That's that.

I'm still pretty funny.

[VOCALIZING]

Go!

Whee!

Whoo!

WOMAN:

The Steve Gleason Act is

now the law of the land.

Word came down tonight

that President Obama

signed the bill

into law today.

The Steve Gleason Act

will give immediate relief

for patients who have

been denied access

to speech generating devices,

and it will ensure that

eye tracking technologies

are covered under

Medicare and Medicaid

for ALS patients.

Rivers and roads

Rivers and roads

We've gone from a family

member who has ALS

to now almost a

hero-slash-poster person

who started a movement,

and the movement

is its own entity now,

and it's strong, so it's

taken its own life,

and I think that's probably

as critical as anything.

Rivers and roads...

STEVE:

Fundraisers

and all that stuff--

Really none of that

is as important

as this right here.

That's all that matters

is me passing myself to you.

Here's a memory from

my high school years.

How to build a campfire.

Dating.

Obstacles.

Trying to give you

everything that I can.

Even if I'm not

present physically,

you'll have this,

and I feel so much better

when I just sit down

and share myself with you.

Rivers till I reach you

Because that's what dads do.

They pass stuff on,

the best of themselves,

to their kids.

Rivers and roads,

rivers and roads

Rivers till I reach you

Rivers and roads

Out.

Rivers till I reach you

All right.

Test, test, test.

Test.

Rolling.

It's right in the middle

of the state--

That's your mom, dude.

What the hell.

That was awesome.

She's a piece of work,

I tell you what.

When I feel something

strong enough,

it takes over my head,

and I had to just say it.

I had to say "Steve, I had

a dream that I liked you,

and I think--

I think that I like you."

...for hundreds of miles

Boo!

This is me giving you a hug.

Just...

Making these videos is my hug.

...down on his knees

Oh, life came crashing

unofficially down...

Unfortunately,

this is real life.

It's not a movie, so,

I'm trying to make it as

hunky dory as possible.

But I think sometimes

real life gets in the way.

[VOCALIZING]

[SCREAMING]

My thoughts for you

and tattoos'

remembrance is this.

Do not get it of

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