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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.
- 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.
- 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.
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.