WEBVTT

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First, I thought I was going to be a pilot.

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Then, I was like that
sounds kind of dangerous.

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Once, I thought I would
be like a garbage man.

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Then I would think ehhhh....

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it would get kinda messy,

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cause you\'re working with garbage!

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Then, I thought,

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maybe I can be a farmer

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cause I really enjoy being around animals.

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Beep, beep, beep, beep, beep, beep, beep.

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Though farmers sometimes have
to slaughter the animals.

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So, I don\'t like that part.

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I would probably be a cow milker

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so I wouldn\'t have to kill them.

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And I like milk, so, that
would be a good idea.

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Here we go, Philly.

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We\'re going all the way,

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All the way, keep going.

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Keep going.

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Come on, we\'re gonna touch that wall.

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Oh, he\'s going back, he\'s turning.

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He can move his legs freely in the water.

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He just lets himself go.

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I try and stay in as long as possible.

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Floating...

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hard.

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I usually sink without my floaty.

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He challenges himself to

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hold his breath, that\'s
part of his training.

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80, 81, 82, 83, 84, 85!

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If he had his choice he\'d be in
the water twenty-four-seven.

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I\'d like to be right next to him, because

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I love being in the water too.

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My mom and dad, they\'re good parents.

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My dad is really kid friendly, because

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he actually acts like us.

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Kind of weird.

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My mom really just helps me a lot.

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You need help?

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Is that better?

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The pregnancy, everything
was normal with Phillip.

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It was a great pregnancy, perfect delivery.

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Everything was wonderful.

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He was happy.

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Always happy.

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And he was a chubby little guy,

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always smiling.

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He was just a delightful baby to have.

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I remember Phillip being in a
walker at your mom\'s house.

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And he\'s going all over the place.

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I was amazed, I was like...

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and, I\'m saying wow, this kid\'s my

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this, he\'s my basketball center.

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He\'s gonna be a brute.

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And then, he just stopped
pushing the walker around.

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He was able to stand.

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And then suddenly he wasn\'t
able to stand anymore.

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Poked, and probed, and

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this test, and that test,

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and they still couldn\'t
figure out what was going on.

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I just was to the point of saying,

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how much do you want to put
this little baby through?

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I asked God, I said God,

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why are you doing this to this little boy?

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And at that point, that\'s when
the doctors made the diagnosis.

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And she came in and she was
talking all big words,

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and all medical terms,

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and I caught something
in there saying seven.

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And she got up, and

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she goes okay, I guess to give us a moment.

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And she walked out of the room

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and I remember looking
at Angela and I says,

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she\'s telling me that I\'m gonna
have my Phillip til he\'s seven?

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That\'s it?

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And I remember I wanted, I
wanted to hit somebody.

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Because I just thought
right away it was a lie.

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There\'s, there\'s no way that

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I\'m not, I\'m only gonna
have him \'til seven.

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Surprise!

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I asked her, I said what can I do for him?

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She said, nothing.

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I said, nothing?

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As a mother, you tell me I
can do nothing for my child?

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There\'s no medicine to make him better.

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It was something that we just couldn\'t fix.

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When they said what he had, SMA,

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I didn\'t even know what it was.

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I had never heard of it.

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What that means is that

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the motor neurons in the
spine are not developing.

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There\'s a portion of the
gene that\'s missing.

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And it\'s a recessive gene,

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so both parents need to
have it for it to show up.

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Most families, they\'ll have
it in their first child.

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But for us, our children are older,

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they don\'t have any signs of SMA.

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God\'s blessed us.

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He\'s strong, he\'s healthy

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and he\'s nine.

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And he\'s gonna keep on going.

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PlayStation 3 is cool because

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you can have a bigger screen

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and the games are usually
a little bit more intense

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cause the remote literally vibrates.

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Portable games don\'t
vibrate, I don\'t get that.

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As parents, our responsibility for Philly

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is to make his life as full as possible.

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If he wants to do something,

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we make it happen.

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I\'ve been diagnosed as being a hovercraft.

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I watch over him a lot and a

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Angela kinda tells me

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you gotta let him do things.

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I\'ll do things but I
won\'t be that far away.

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I\'ll be right behind him
and I\'ll be ready to

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do whatever I have to do to make it okay.

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He\'s gonna do whatever he wants to do,

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and we\'re not gonna try to hold him back.

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He uses a power wheelchair.

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That\'s his mobility.

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It just lets him

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be involved with the games
that the kids are playing.

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It means that he\'s not excluded.

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It gives him movement and freedom.

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It\'s just the wind going
past and he feels that.

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Does he want it to go faster?

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I would say he wants it pushed up a notch.

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He wants it as fast as it can go.

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It says, see you later, man.

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Really, it\'s not that
easy to figure out but

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some people figure it out.

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They\'re smart enough to figure it out.

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He never wakes up and says,

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I wish I didn\'t have to go
in my wheelchair today.

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He wakes up singing.

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He... he\'s annoyed about therapy, and

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physical torture, he calls it.

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But he presses through,

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and he does what he needs to do.

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A tough day in Phillip\'s life
is when he goes for surgery.

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You feel helpless.

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You feel like you don\'t know what to do.

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I had just laid him on the operating table.

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And he looked at me and said,

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Daddy, I\'m not ready for this.

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I don\'t want to do this.

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I just looked at him I says,

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we have to do it bud, this is for you.

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This is for you.

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He\'s strong.

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He hates to see anyone upset.

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He\'s like you.

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I can come home, beaten up from work,

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beaten up bad

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\'cause that\'s what sometimes happens

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and I look at him and I just,

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I have to smile.

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On your worst day,

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Phillip could put a smile on your face.

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He makes the hard times easy.

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Okay,

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ready?

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Dad, just hold up my left side.

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Hold his left side.

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Angela knows how to take care of Phillip.

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Oh yeah, gotta get these
toes, the little family.

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Other foot.

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Got the toes.

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You would say she makes it look easy.

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I know it\'s not easy.

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Dad, can I lean on your hand?

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Aren\'t you gonna hold your head up?

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He\'s tired dad.

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I know.

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Hands.

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It\'ll be over soon.

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Almost there.

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Ok?

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Can I play my Zelda for ten more minutes?

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Ten more minutes?

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Bedtime is...

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as late as he wants it to be sometimes.

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He likes it to be late.

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Phillip\'s like the glue and he just

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glues everybody together.

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Makes it all happen.

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And everybody says it\'s supposed to be dad.

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You\'re done? Go to bed.

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I\'m not done.

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Don\'t look at that thing!

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Dad just holds up the walls.

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Ok, let\'s put your blank on.

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Ok? It\'s good?

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Done.

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Good job, Phil.

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Excellent job, Philly.

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I love you so.

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I love you too mommy. Good night.

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Good night.

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I can\'t imagine not being with him.

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I,

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you know, I don\'t wanna think of it.

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I know he would want us to know

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that he would be with Jesus then.

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He\'s not afraid of that

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and he wouldn\'t want us to be afraid of it.

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And he wouldn\'t want us to

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be, be sad because he wouldn\'t be here.

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He just inspires us to be together.

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He wants all of us

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to remember that we\'re
important to each other.

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We would never lose what he gave us.

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I would take a thousand more
children just like Phillip

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and I wouldn\'t wanna change,

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other than his condition,
that I would change.

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But him himself, no.

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I\'d take a thousand more just like him.