Why She Smiles (2021) - full transcript

- Well, I woke up and Jim
walked into Jamie's bedroom

and she was in
full-blown seizure,

and I heard Jim scream and
I jumped up and ran in there

and, oh, I seen the fear, oh,
the despair in Jim's voice.

"Dan, you got to watch her,
Dan, I got to call 911."

And her eyes were rolling
in the back of her head

and she was just shaking and
it was so scary, so scary.

And when that was all, when she
came home from the hospital,

it was like nothing happened.

She was smiling.

She was smiling when
she walked in the door,



and I was like, "Jamie,

if that's God's love, well,
then I believe, I believe."

I'm sorry about that.

Huh?

- Huntington's disease
is a progressively

degenerative
neurological disorder.

It's inherited.

You can't catch it from anyone.

You could share a
cup with someone

with Huntington's disease,
it's never going to affect you.

However, what happens is you
get extra copies of a gene

that overproduces
protein in your brain

and what that results in

is it literally eats holes
in parts of your brain



that control motor
function first, usually.

- There you go,
you're doing good.

- And then of course, there's
no cure for Huntington's.

You can only try to remediate
symptoms as they appear,

but it is relentlessly
progressive,

which means it never
ceases to get worse

until it takes the victim.

I hate to use the word victim,

but until it takes
the patient's life.

- You ready for your rows?

Okay, how many are
you going to do?

- 25, okay.

Two, three.

- Hi, I'm Jamie and
I'm 34-years old.

- Good job

Four, five, you
want to switch legs?

- No.

- You want to keep going?

- Yes.

- You're kind of
a show off today.

- We knew enough about it,

that this is not a
disease you want.

You know, I'd already
had one friend die

of Lou Gehrig's disease.

I've had, you know,
different people in my life

who've had neurological diseases

and those have been terrible

but Huntington's was the worst.

- Reading the literature
online about, you know,

the lifespan, you
know what the end game

of that disease looks
like, it's not very pretty.

And we left mom alone in that

and she had the.

That was.

- No, I think we left her alone.

- She struggled a lot

and although we had our
own issues and we fought,

I mean we're a year apart

and she stole my clothes
and I hated her for it.

I've always been somewhat
protective of Jamie.

Dancing for us, lovely.

We're close in age
and grew up playing together

and having our own lives
as sisters together.

So there were a lot
of different dynamics

in our relationship.

Some here.

A couple of girls with food
all over their mouth.

- That was not easy
on our marriage.

Two people that were pretty
free and independent.

That was like...

- We went from
freedom to two babies.

Yes, being held
captive by two babies.

- To then four years later
having our son, Jacob.

Praise the Lord, Jacob.

Praise the Lord.

You so funny.

You're not going
to praise the Lord?

We had no idea how to
be parents, no idea.

They just became
our little buddies.

One more, and
this may be a faster song.

You can show them how
you broke it down.

Oh, someday, how
we'll tease you with this.

Okay, this time I'm going to.

Oh, you look so lovely, Jacob.

For a large part of life,

Jamie was like a mother figure.

- No Jacob, don't pull
this, no, no, no, no.

- Our parents got really
busy around the time

after I came around with things
at the church and whatnot.

So Jamie and Micah
definitely kind of

took care of me for a while.

- Another one, you
literally would,

first day you were
home from the hospital.

Jamie, I spent most of my time

being carried around by Jamie.

Look at that Jamie,
you and your buddy, Jacob.

You know, maybe,
it's never really dawned on me

but maybe it's only fair
that I spend a lot of my time

carrying you around now, Jamie.

Oh, look at that.

You do carry her.

In a way.

Yeah, that's true J.

Tables have been turned.

Tables are turned,
now he's carrying you, Jamie.

- I bet you did a
much better job.

- Oh, I don't know.

I think you got dropped
a couple of times.

- You know, she was teased a
lot growing up and you know

kids at school would say
something about Jamie

and it would make me so angry,

or people at church
would criticize Jamie,

and, you know, all of that
stuff, I was in the middle of it

, trying to,
you know, to protect her

or to stand up for her.

Oh, fatherhood
has gotten harder.

- Jamie likes to
see her dad work.

She struggles with depression

and those were
really tough years.

And I, we took
her to counselors.

Nothing seemed to help.

You parked up there
and it started raining.

We picked you guys up.

Is it rainy now?

Look at that.

Okay, I'm looking at
the water, is it rainy?

Barely.

Dad, I want to get in the boat.

No, do not get
in the boat, just wait.

- I think that for a while I
wanted try to fix it, and...

I think our
relationship changed for a while

where I was just
like this young kid

who didn't know why
my sister was angry

or why my sister was
acting the way she did.

So, you know, it changed,
it changed a bit.

- You know, you take it
upon yourself to try to,

you know, make sure
she's doing the things

that are important to to
stay healthy or to be happy

or to make things okay.

And you can't, you know,
in the end, you just,

you can't...

- I was very depressed.

- I mean, she was probably,
I would say 16-years old

and she had a really wonderful
boyfriend we really liked

and they were getting
along and life was good.

And came home, and
this was a normal day,

and about maybe 11
o'clock at night

she comes up to
my room and said,

"I just took a bottle
full of Tylenol."

We kind of looked at
each other and said,

"Well, I got to get
her to the hospital."

So I put her into my car
and we went down there

and she got her stomach pumped.

And she ended up being,
you know, inpatient

for about a week,
I think it was.

We knew there was something
going on in her that was bigger

than we could understand or
fix or address, it was big.

Micah's day was yesterday,
she caught some good fish.

Jake, ready to go?

- I think when it
first happened, it
didn't really sink in.

Like I remember just visiting
Jamie in the hospital

and she had to go to
like a mental health ward

and we'd visit her there.

And I remember just
thinking, like,

it didn't really feel
real for a while.

I don't think it was until
like later that it actually

like, I don't know,
sunk in that, you know,

my sister tried to kill herself.

We kind of went through then,

I would say almost two
years of different kind of

hospitalizations and
medications and psychiatrist

to kind of figure this out.

And so we went to family therapy

and I just remember being
so disappointed after that.

- All the things that we
had tried and that doctors

had told us were going
on with Jamie were wrong

and the ways we were trying
to solve it were wrong.

- You couldn't add anything
up because here you are,

and you know, to your
mind, it's a happy home.

We do normal things,
you have a normal life,

you have friends, you know?

And it didn't add up
to what we were seeing

with the behaviors.

The behaviors were
just so severe.

Jamie, let's see your eyes,
I got you in your eyes,

open your eyes.

And I just remember feeling
very lonely, very isolated,

very like lost in this journey
and we're alone in this.

And I think it was, and I
hadn't experienced loneliness

in my life but that time I did.

I just felt like
who can I talk to?

Because I felt, I just couldn't.

- To be honest, we
didn't feel safe

in telling people about
her suicide attempt

because we felt like
she would be judged.

And we couldn't
bear that for her.

Or that, you know,
we would be judged

as you must not be good parents

or you must not love God enough.

And it was so frightening that
we held it all to ourselves.

You had the most
beautiful clothes.

- Look at that.

Looks like a baby
from the pioneer days.

- Yeah, so cute.

Do you ever
think of them, Jamie?

- Yeah, little bit.

Leah and Jim?

Oh yeah, oh my god.

They loved you,
they loved you a lot.

- Show them, Jake.

Jamie's ex, her
ex-boyfriend Jason's parents.

As a family we spent a
lot of time together.

- I'm connected with the
Sorums purely by love.

I adore them and have
since the day we met

and I can't even
tell you when we met

but I know it was
through church.

And then we were also neighbors.

And then at some point
in our relationship

our kid started dating Jamie

and our oldest son,
Jason, started to date.

Yeah, Jason.

- And I think Pat and I kind
of had a lot to do with that.

And Pat always said, if Jamie
didn't marry Jason, she would.

So that's how we got connected

but I'm really connected
to them through love.

I just absolutely love
and adore the Sorums.

Always will.

How long did you date Jason?

- For seven years.

We were very close.

- I've never liked any of
my daughter's boyfriends.

So I'll put it
straight up that way.

Oh, you liked
him, you liked Jason.

- They all kind of, they're
kind of jerks but, you know,

I try and had to work with them.

Not true.

- I can't tell you how it
all actually all started,

I just know...

- I can.

- Okay, tell me.

- Well, what it was is the
Sorums are game players.

They love playing
games, you know.

- Board games.

- Yeah, board games.

And I'm like one of the last
people, I can't stand them.

Somebody comes over with
a pile of board games,

I'm like, "I think I got
to go down to the lake.

I hear a duck down
there in distress."

But you know, I can't stand it.

Jason says, "Oh, we're all
going over to Sorums tonight,

we're going to have game night."

And I'm like, please.

But anyway, I go.

You know what?

After we started doing
it, I was having fun.

You know, I can't remember
some of the crazy stuff

we played, but that was
one of the main things.

We went over there for that.

And then they started, you
know, looking across the table

and Jason, "Yeah, I
think I like her."

I said, "Yeah,
she's a sweetheart."

- Took them a while to kind
of admit that they, you know,

liked each other and
wanted to hang out.

- Yeah.

Those dang board games.

Yeah.

- But other than that-

- They're part of our family,
they were there all the time.

- No, Jason was a good young
man and they enjoyed many years

of being together and it
was a great time for Jamie

to have a companion.

- He loved her with
all of his heart.

He used to say to me,
"Mom, isn't she beautiful?

Mom, isn't she beautiful?"

Jamie's hair
was more blonde as a baby.

Yeah, strawberry
blonde, yeah, look at that.

- I was a strawberry blonde.

Yeah, you are.

You're a what?

Strawberry blonde?

Like literally when almost,

well just a little bit
after we met Jamie,

you were already bringing
her home on Sundays.

Just enjoying her until she
went to her adopted home.

Jamie, got this morning, Jamie.

Look over here.

Jamie's adopted.

Show me, can I see
the baby's hand?

You show mama.

Show mama.

I think when you're up to

about sixth, seventh grade,
your life is just now.

You know, this is my family,
you don't question it,

these are my mom
and dad, you know.

I think when she got
into her maybe 15 or 16,

I think it was in that time,
when you become more curious

about who you are
and your identity,

and then she began to
ask questions about that.

- She started noticing
that she was different

than her other two siblings.

You know, Jamie's a
little more introverted,

they were more extroverted.

She loved to read and write

and they were busy doing
extracurricular activities.

And I think she started
to feel like, you know,

I wonder who my people are,
you know, are they like me?

And she did ask me if we
could find her birth mom.

- We always said, Jamie,
are you interested?

Should we pursue it?

Do you want to, you know,
we always had that door open

and, you know, kind
of gave her the lead.

But it kind of became
a dead-end street

because it was a closed adoption

and there was just no
way we could open that.

- We did have a sheet of
paper that told her height,

it told us that
she was in college

and what color her eyes were,

and that meant a lot to Jamie.

I made sure she had that.

This is as much as
we know about her

and you are welcome
to that information.

- Yeah.

We had been watching
Jamie struggle with symptoms,

with tripping and having
a hard time speaking

and just insidious,
those insidious symptoms

that we were all wondering
what the heck was going on?

She was falling
a lot and shaking.

And I think my mom was
in a lot of

she didn't want to,
she was blind to it.

She didn't want to acknowledge
it was something bigger.

So she was saying
it was a reaction

to the depression
medication Jamie was on.

- She would fall and that's
what I was thinking it was.

I was going to go and
tell that counselor off,

that you've given her
too much medication.

So when we got home, we
did go to the doctor.

We took her to the
counselor and he said to us,

"It is not the medication."

He said, "You need
to have her tested.

You need to have a blood test
and see if it's Parkinson's

or, you know, what it is."

Well, as soon as he said
that, all the memories

came flooding back to
me about her history.

There's something in her past.

- That there's
something in her past.

But I said to them,

"You need to find her
because something's wrong."

But in my heart of heart I knew
it was not going to be good.

First we had to get a lawyer.

Then we had a petition a
judge to open up the records

and our doctor had
to sign off on that,

said this is a medical reason

why we had to open
these records.

So we got them unsealed
at the adoption agency

and then we're able to
get the information.

And then right
about that time...

It all happened at one time.

- Then at one time
that you got...

Before, you could not test to
see if you get Huntington's,

but now they have a test
and it showed positive,

right about the time
we got the information

that her mom had this, so...

- She was so excited.

She called me and she was
just, she's so bubbly anyway,

even when she's not
excited, she's bubbly,

but she was just
bubbling over that day.

And she called me
and she's telling me,

"Oh Leah, I found my
mom, she's in Indiana.

And I have sisters and I
have brothers and, oh..."

You know, just going on and on.

And she said, "But my mom,
she's been in a nursing home

for like the last seven years,

she has Huntington's disease."

And instantly I was
just devastated.

I was just devastated.

- When we went into the
doctor to get the results

from her blood test, it's
such a strange thing.

But I, as a mother
was just stricken

because mothers are supposed
to protect their children

from all harm.

And I just was like, you
know, we adopted her.

We have covered
her, her whole life,

raised this girl to be
successful and happy

and now I'm hearing
she has this disease.

I was heartbroken.

We got through the phone
call and we hung up

and I just burst into tears.

And Jason looked at me and
he said, "Mom, what's wrong?"

And I had to find the
strength to tell my son

that Jamie's mom had
Huntington's disease.

And of course he's
in nursing school,

so he knows about
Huntington's also.

And I watched my son's
color drain from his face

and I watched his head
drop into his hands.

And we just sat there, me
sobbing and him in silence.

- Now when I got diagnosed,

I decided to break it off.

I wanted him to be happy.

- She said, "Jason, I
want you to have a life.

You need to go on
and have a life.

I can't make that
journey with you."

Which was shocking to me.

- He told me, "I'm staying
with her, I don't care what,"

he says.

And I said, "I support
you, anything you do."

- We were still in the midst
of talking about it all

but she just took matters
into her own hands

and said, you know, "Jason,
I want you to move on."

- She gave Jason the gift
of, you know, freedom.

"Here, you need to go
on and you need to marry

and you need to be
able to have children."

And, you know, and
it was a huge gift.

And it's one that you
don't really want to take

but it was huge.

So thank you, Jamie, but
no, thank you, Jamie.

I still love her to this day.

- And then she takes this
Austedo, this little blue pill,

which is a new pill
for Huntington's.

So the last time she went
to her Huntington's workshop

they introduced this pill.

And so we're trying it
and she's been on it

for several months.

Honestly, we don't
see much difference

between this one and the
one she was on before.

- I watched her, you know,
come from being able to walk,

you know, many years ago

and she would fall
and it would hurt.

And she would almost begin
to cry but then she wouldn't.

And I would be the one
that would go in my room

and I would sit and cry.

I would cry for her because
I knew how much it hurt.

- You want to get in your chair?

That's my baby girl.

You know, that I
just, her whole life,

because I knew there was
something in her background.

And so my whole life,
I prayed for her.

You know, don't let this happen,
let her have a normal life,

you know, and you just want
to guide her that direction.

And all of a sudden it was
here and we couldn't stop it.

- You just kind of
go numb for a while.

You don't even want to look.

I didn't even want to
look at it for a while.

I just kind of had to
just let it sink in.

- I think the moment
where it really hit me,

like how horrible
things were going to get

was when we were in
Indiana and we were

visiting Jamie's biological
mom in the nursing home.

And we walked in
and there sits Angie

and she's got like a helmet
on because, you know,

with Huntington's eventually
you just are in a room

and you roll around and, you
know, you have no control.

So I remember walking in
and seeing Angie like that

and just knowing that
was Jamie's, you know,

eventual future.

And that was, I think, the
moment where it was like

shortly after her diagnosis,
that I really understood.

- I think the
hardest thing for me

and it's so silly,
but you feel like,

and maybe other Christians
have felt this way,

that you know, I've lived
here for you my whole life.

And could I just
have this one thing?

Could, you know, can
my daughter be well?

I think I had to have that
conversation with God.

I was upset.

It's like, you know,
I would do anything

for her not to have this.

And then you realize that
the truth is we're not

given a pass because we're
Christians, but I wanted it.

I wanted the pass and I thought,

if there's anything
I can do, you know?

Anything I could do, I would
to spare her from this journey.

Whoops.

Jamie, are you ever afraid?

- No.

I am fearless.

Were you
ever angry with God, Jamie?

Or asked why me, God?

- No.

I have no fear.

You're not afraid.

- There was a thorn

and I pleaded with
God three times

and he said, "No."

He said, "No.

He said, "My grace
is sufficient."

My grace is sufficient.

Yeah, I'm looking forward to it.

I am going to dance.

- I don't know if
heaven exists, honestly.

- It's something I
haven't thought about

in a long time.

I thought about that a lot about
probably like 10 years ago.

- Of course.

- Absolutely, absolutely.

And Jamie's going to
be queen of gin rummy

when she gets there, she's
going to kick some angel booty.

- I do, you know, I do, I do.

I choose to believe in heaven.

I choose to believe
that when I die that I,

I don't know if it's right
away or if it's, you know,

it's like going to
sleep and waking up.

But I hope that when I do
wake up that my mother's face

is staring at me, and
my father, she says,

"Welcome home Dan."

- You know, it seems like it
would be just to have a heaven

but I just don't
know if that exists.

- Yeah, I guess that the
afterlife aspect of all this

is something that I haven't
really come to terms with yet.

- I have no idea other than
it's the dimension of life

that we have no idea what it is.

There's so many
dimensions of life.

And the older we get you realize

that the greatest
dimension of life is love.

It's a grace dimension.

I mean, whatever else
goes, fails, whatever,

love is the greatest dimension.

So I think heaven is a
greater dimension of love.

God is love and wherever
you are, there's love.

So whatever that
dimension looks like,

it's going to be
a lot about love.

- When my kids were little,

I get up in the night to make
sure they had their covers on.

I wouldn't stand the
thought of them being cold.

I would always put them
in these sleeper pajamas.

90 degrees.

They were already
zipped up and warm

and I'd still get up and make
sure their covers are on.

And the thought of her leaving,

the thought of her leaving me,

I'm her mom, I'm her protector.

And just for that,
it's just in my faith,

just a brief moment when
she's going to leave our arms

but she's going to
enter a place where

those who've gone before us
are going to take her hand

and that does give me comfort.

- You're going to
release her to love.

- Yeah, my mom who was
a force and your mom,

they will be the next
one that take her hand.

- I am going to die.

I have found purpose
because of my illness.

There is a new peace.

- She knows something
that I don't.

She knows joy.

She knows a lot of joy and she
has faith and she has hope.

Yes, yeah, that smile
is what breaks my heart.

And it also gives
me a lot of joy,

but it also breaks my heart,
just like a double-edged sword.

I think it's pretty impressive
that she smiles

first of all, because I'm not
sure I'd smile all the time.

- She approaches this
disease with, like,

such constant optimism
and positivity and grace.

- She is a determined woman.

She is stubborn and she is
going to live her life fully

until the end and she
doesn't wallow very long.

- You know, feeding her
this morning, you know,

there's like food and stuff
coming out of her mouth

and she's laughing and she's
choking at the same time.

And it's like all
this stuff that

I would just be like over it,

and Jamie just
like rolls with it.

So I think her
strength is very unique

and, yeah, I'd like
her to know that

I don't know if there's anybody
in this world that I know

that could face
it like she does.

- More than one time, she'd say,

"Dan, it's going to be okay."

And here she was with a
disease that no cure for,

and she was going
to eventually die,

telling me that it
was going to be okay.

- It's hard to put
your finger on it.

It's just that she has a peace
that you can't explain it.

She just, she's made her
peace with it, and...

- I've got this and I'm
going to talk about it

and I'm going to die from it,
but I'm going to live now.

- Yeah, Jamie smiles
because she's full of love.

She's full of hope.

She's just Jamie,
that's just who she is.

- When my day comes,
I'll be ready.