Looking After Mum My Life


Looking After Mum

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SHE SINGS:

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Shimoye, can you get me two paracetamol, please?

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Love you, darling.

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HE RAPS:

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Warrs?

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WARREN: Yeah?

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-SHE GROANS

-What's up?

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SHIMOYE: You OK?

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-SHE INHALES

-No.

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-Why?

-I'm tired.

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Well, do you not want to get up?

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Uh-uh, I don't feel like getting up.

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I'm in pain at the minute.

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Have you taken your morning pills?

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No, I needed to have a cup of tea first.

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SHE GROANS I'll make that for you.

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What kind of tea do you want?

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-The usual coffee.

-OK.

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'My name is Shimoye, I'm 13 years old.

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'I've been a carer for my mum

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'for about six years.'

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MUM CALLS

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Yeah, Mum?

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'When I first started caring for her,

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'I felt happy because I knew I could look after my mum.

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'I'd be able to show my mum how much she means to me

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'and how much I do love her, and stuff.'

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'And then I felt sad at the same time

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'cos obviously I didn't get to play the child role any more, so...

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'And then I felt angry that she got the disease, and stuff.'

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Put it there, thank you.

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'She has an incurable disease called CPS,

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'which stands for...

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'She has to live with pain for the rest of her life.'

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You OK?

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No, I want to take the pill, cos my back is killing me now.

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But I need to eat. You know I can't take any of the pills

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-unless I eat, innit?

-Mm-hm.

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You do the washing? You put the machine on yet?

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-Mm-hm.

-Are you all right?

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-Yeah.

-You look tired, babe.

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I'm very tired, but it's fine.

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'Well, it's just me and my mum, alone,

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'so I'm the main person that she has to come to whenever she's

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'in pain, or if she is worried, or she needs help,

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'or something like that.'

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Sometimes...

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my mum might be in a better mood,

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or she might be in a worse mood...

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depending on how the day is.

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SHE GRUNTS

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Are the pills kicking in?

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No, I'm feeling... I'm having a bit of a snap in my head.

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-Headache?

-Yeah.

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Oh, please, not now.

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'It's scary sometimes...'

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MUM GROANS

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'..what I'm doing.

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'What on earth is going on inside her?'

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SHE GROANS

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I think I need to get up...

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..and get some fresh air, otherwise I'll...

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Do you want to go outside?

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Yeah, I don't want to be in this bed.

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Well, then you can come with me when I go to Nanny's.

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Yeah, I'll maybe do that, yeah.

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Give me a kiss.

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Give me a hug.

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MUM MOANS

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I hope I'm not hurting... Making you feel pain or anything.

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No...

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..I feel better, actually.

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# The pain I feel, yeah, is so deep

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# It squeezes my heart so bad

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# And it leaves me in a state of shock

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# Sometimes I wonder

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# What it's like for you. #

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I'll get these out, you go do your teeth. Just go. Out!

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'I'm Chloe, I care for my mum,

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'I'm 13 years old.'

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-CHLOE WHINES

-Be careful, they'll still be hot.

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-I know. I have a system so you can sometimes just go.

-Oh, yeah, yeah.

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Normally, it's the mother telling the child off,

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but this is sort of reversed,

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so I'm telling her off more.

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I'm just staying at home

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and going with my mum to the doctor's today,

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instead of going to school.

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'I've been doing this for as long as I can remember, really.'

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'It's got a lot harder because her condition has deteriorated.'

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Aren't you meant to wear this in bed, as well?

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No idea.

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The ankle's a bit swollen -

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I'm going to have to open it up a bit further, sorry.

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'My mum has dislocating hips,

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'a bad back and fibromyalgia.

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'Fibromyalgia is a chronic pain disease.

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'It tells your body that something really, really hurts

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'when it doesn't really hurt.

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'So, like, if somebody just tapped you,

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'it might feel like they punched you.'

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Whoa!

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There's a hole there, Mum.

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'My mum, I feel, is getting worse, not better.

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'Her conditions are deteriorating.

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'She would say there's more bad days than good days.

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'She recently developed a peanut and nut allergy,

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'so she's come to get that checked out.'

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People see the physical side, where you're tired.

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They don't ever see the emotional side,

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that it's hard on you as a person,

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because you're seeing someone you love in pain.

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How was it, Mum?

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Not too bad.

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Any new medication?

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No, but they've got to refer me to the allergy clinic,

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and I may need an EpiPen.

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INDISTINCT

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Yeah, all right.

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'It's so hard to see it getting worse,

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'so it's very important for me

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'just to have that time just to find a way of dealing with it.'

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It's cold outside.

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Couldn't you have got an appointment in the summer?

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'Things like poems and stories,

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'it gives me a chance to just let out my feelings.'

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When I'm stressed,

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I write poems in my imaginary box.

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Words are my friends.

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They comfort me when I feel alone.

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Words help me cope,

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stop me from being frantic.

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I'm surrounded.

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I'm surrounded by words.

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Surrounded by words.

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Surrounded, surrounded...

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..surrounded by words.

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# Surrounded by words. #

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'My name is Warren,

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'I'm 14, and I'm a young carer because I look after my mum.

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'My mum says I am her legs,

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'because I have to do things that Mum can't do all the time.

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'She has type 1 diabetes,'

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'which means she has no feeling in her legs and her hands.'

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-Does it hurt?

-No, course it doesn't.

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'She has to inject herself with insulin every morning

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'to keep her blood sugar levels low.

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'I've been doing this for about four or five years now.

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'Well, I feel like she spent all those years looking after me,

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'I guess now it's my turn -

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'kind of like returning a favour.'

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KETTLE BOILS

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'The first time I remember my mum going to the hospital,

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'I was, like, eight,

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'and that's when I started paying more attention

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'to what I had to do for Mum.

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I guess at the beginning it was quite difficult,

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but now I'm older I'm getting quite into it.

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If her blood sugar is too low, she would usually ask me

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to get her some Lucozade,

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and if her blood sugar is too high,

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she would usually ask me to go make her a couple of cups of tea.

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-Mum?

-Oh, thank you.

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-You're not even done.

-Lovely.

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Can you go out to the pharmacy and get my medication?

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Even though I might not want to do it, if I say no, my mum can't go.

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Just give that to your mum, all right? Thank you very much.

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Mum?

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# When I see my mum in pain I always come around

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# But what if I'm not there? That's all I think about

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# Every second, every minute, every hour, every day

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# Every cheer, every smile, every heartache, every pain

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# We share every one of these with a special connection

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# And every bit of pain like a lovely heart infection

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# When I see my mum in pain

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# I always come around. #

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Hopefully today is going to be a...

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fun, exciting, and...

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also a much easier day than other days,

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so that, erm...

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I can look after Mum properly,

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and she's not upset, or angry, or anything like that.

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That's all right. Just do...

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I just want this... This is the most...bit.

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Just the rubbish, cos I keep stepping in it, and I don't want to.

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Cos, listen, I'm hungry, so you just oven it.

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SHIMOYE LAUGHS

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You press it. Just use here.

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-Yeah, there you go, press it.

-Yay!

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Yeah, that's it - see?

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So do the other one like that. There you go, that's bigger.

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Yeah? So you can give that, say, another two minutes?

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Thank you.

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I don't like... If I cook, I don't like tasting it first.

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-Mm, that's good.

-Is it nice?

-It's nice.

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Yay!

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Oh, this is the dumpling you made.

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Oh, look, it turned squidgy.

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I know that.

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-When I took it, I was like, "Ugh."

-No, I like it, though.

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That's, like, your signature...

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Your signature dumpling. It's juicy.

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'She can be really, really happy,

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'and then, just like that, it's just,

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'all of a sudden she's in this really super-depressed mood.'

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I don't want to talk, Shimoye, the way I'm feeling right now.

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Are you that tired?

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-Not really tired.

-Ill?

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-I'm just in pain.

-Oh.

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These ones.

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Mum?

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She said she was OK, but, erm...

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..I have to always double-check

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before I go to my bed or something,

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cos I obviously have to wake up early for school tomorrow.

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It's now midnight.

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I have to make tea for Mum.

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Yeah, so this is, like, the third cup of tea

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I've made for Mum.

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See?

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The kettle was still kind of warm.

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My mum woke up during the night, and I heard her,

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and then I didn't go back to sleep till I knew she was safe.

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And then I was watching, because from my bedroom...

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..I can see straight to her bedroom.

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Puts my mind at rest cos I can make sure that she's OK.

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And then I'm tired the next day for school.

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'I'm on crutches today because I've sprained by foot.

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'Sometimes my mum is in so much pain I can't even

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'give her a hug before going to school.'

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See you later, princess.

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DOG WHINES

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I suppose it's a good enough day that we can at least hug each other,

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which is good.

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OK, have a good day.

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Things are getting on top of me.

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I'm going to speak with Ms Sloan, my school nurse.

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Last night was quite hard because, erm...

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when I'm on crutches, it's hard anyway,

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and then I was worried about my mum, as well as being in pain,

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so it was quite difficult.

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-A difficult night for you, as well?

-Yeah.

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At the moment, my mum's getting worse, not better,

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so it's quite hard.

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As Mum's pain is a bit worse,

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we need to make sure that we're there for you.

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And the more support you need, the more we'll give you.

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If we can get you into a place in school where you're relaxed,

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where you know that you could go and take that time out,

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and you can have fun at break.

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-Yeah.

-That's what it's all about, isn't it?

-Yeah.

-Yeah?

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It was a lot harder than I wanted it to be today,

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but I've got through the day,

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I've powered on, and I've stayed in all my classes,

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taking all the learning I could in.

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All I have to do is think that...

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..I will have good days and bad days.

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You can never tell which one it'll be.

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I just hope tomorrow's better, not worse.

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'The pressure of balancing school and caring is quite topsy-turvy.'

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I have to stay strong not just for myself, but for my mum,

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and I'm just trying my hardest to make sure she doesn't worry.

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I don't think I'd be able to live with that.

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When my mum gets just a cold, I feel like,

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"I can't even cope with you right now."

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Do you know what I mean?

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Yeah, go on, just rip it off. Aah!

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-Ohh!

-You said just rip it off, I'm sorry!

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Go on.

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Yeah, there you go. Thank you, darling.

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Kiss.

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SHIMOYE CHUCKLES

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MUM PRETENDS TO CRY

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Mummy's going to cry, give Mum a hug.

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Ahh...

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I love you, thank you.

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'Having the roles switched, so the child having to be

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'the carer of the adult, what you lose is being able to have a

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'normal childhood and having someone that you can depend on.

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'But from that, you gain the independence,

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'the ability to do certain things that you didn't think you could,

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'and being self-reliant.

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'Having to deal with emotions, you're able to control them

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'and become a stronger person, being able to not just be

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'strong for yourself, but also for the parent

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'that you look after.

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'Balancing schoolwork, housework and everything,

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'it is a difficult task.'

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That's just my job. I have to get through the good times and the bad.

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'Today, I'm going with my mum to see an eye specialist,

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'because her condition is getting worse.'

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So, if you look at my left ear now.

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Things have looked a little bit more bearable this year.

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There is a risk of you losing your central vision.

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You do have to be conscious of that going forwards, I'm afraid.

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'It worries me a lot if her eyesight continues to get bad.

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'Driving is a very big part of Mum's life.

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'She really doesn't like public transport,

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'especially with her bad leg, having to stand around a lot.'

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Cheers.

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Are you worried that I might go blind,

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and then I wouldn't be able to take you anywhere?

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-Does that bother you?

-Yeah.

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'To be able to go out skating takes a huge weight off my shoulders.'

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# Skating down ramps, jumping off gaps

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# Shooting basketball or playing PS4

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# These are things I do when my mum's not telling me

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# To go make food or make some tea

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# When the day is through this is how I kick back

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# This how I relax, then I do an ollie

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# And kick back into a kickflip

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# This is it and this is how I chill. #

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Oh, no.

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Warrs?

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Wait, Mum, can I have, like, five minutes, and then I'll go?

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Er...maybe.

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What do you mean, "Maybe"?

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My friends are getting really annoyed

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cos I keep leaving...

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every time we finally get somewhere in the missions,

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I have to leave.

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Oh, careful, son! Thank you.

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Thank you very much.

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'I feel like sometimes it does get too much,

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'and I just have to take some time out.

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Is there something that upset you this week, Chloe?

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My mum had this really bad day where she couldn't walk

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or use her legs at all,

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so she had to, like, crawl around the house,

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and I had to carry everything in for her cos she couldn't hold anything.

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So it was quite hard.

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Sometimes I feel when we go out to play, when I feel Mum's

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having a bad day, then you're not your joyful self and that.

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It's cos I'm not really thinking about...

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Maybe thinking about my mum, and...

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-what if she falls or something?

-Yeah.

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Push, foot, up.

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I don't know if everything is going to be the same when I go home.

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Life, for me, is a roller-coaster.

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I've got used to its ups and downs.

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This happens to me every day.

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Lean and grab.

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'Within a minute, my feelings can change.'

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I just don't know what's coming next.

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I don't know if everything's going to be the same when I go home.

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Chloe, darling.

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This is the evening medication.

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Most of them are the same amount each day.

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I think I worked it out to be about 36 tablets in a day.

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On a good day.

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On a bad day, I think it's about...

0:20:160:20:18

-42 or something?

-Something like that, yeah.

0:20:180:20:20

-Shimoye?

-Yeah?

0:20:220:20:24

What happened last night?

0:20:270:20:29

-I felt like I was having a stroke, to be honest.

-Really?

0:20:290:20:31

I called the doctor this morning,

0:20:310:20:33

and they said that I need to watch myself for the rest of the day.

0:20:330:20:38

I want you now to just, kind of, focus on me, like, for the day.

0:20:380:20:42

I know how to check if you have a stroke.

0:20:420:20:44

-You know how to do it?

-I learnt at school.

0:20:440:20:47

You aren't tipsy or topsy-turvy or anything?

0:20:470:20:49

-No.

-So, they're fine.

-OK, and what else?

0:20:490:20:52

-You're speaking to me normally right now.

-OK.

0:20:520:20:54

-Yeah, well, I was doing this...

-MUM MUMBLES

0:20:540:20:56

Yes, it's best if you exercise your face, so that it doesn't, like...

0:20:560:21:00

Yeah, like this, you mean. That's it.

0:21:000:21:02

I just need for you to just look... Look me in the eyes,

0:21:020:21:05

-say, "Mum, you're sick."

-MUM CHUCKLES

0:21:050:21:08

-Oh, baby.

-I know you'll be fine.

0:21:080:21:11

I will be fine. I just don't want you worry.

0:21:110:21:14

'If I'm feeling upset, I'd listen to music.

0:21:160:21:18

'If I'm happy, I want to listen to music.

0:21:180:21:21

'If, like, whatever I'm doing,

0:21:210:21:22

'most of the time I feel, like, the need to listen to music.'

0:21:220:21:26

You know what? This is what I need to do more often, like, fun.

0:21:280:21:31

-You know when I used to come out and walk?

-Mm-hm.

0:21:310:21:33

It's because I kind of get...

0:21:330:21:35

The pain kind of prevents me from wanting to come out.

0:21:350:21:37

You just sort of...

0:21:370:21:39

don't want to see anyone, really.

0:21:390:21:41

'There's always that one song that expresses how you feel

0:21:410:21:45

'on a day-to-day basis.

0:21:450:21:46

'It's like a waterfall of feelings that just flow out of you

0:21:460:21:49

'once you listen to it.'

0:21:490:21:51

-You're playing Transformer.

-What?

0:21:510:21:52

No, I'm not!

0:21:520:21:54

# I can transform... #

0:21:540:21:55

-Isn't that what's playing?

-No.

-All right, let me hear.

0:21:550:21:58

-You don't know the song.

-OK.

0:21:580:21:59

# My life is surrounded by sound

0:22:010:22:04

# It makes me so happy to hear it

0:22:050:22:10

# Sound waves post through my ears

0:22:100:22:13

# So close I can feel it

0:22:130:22:17

# All I love to do is be surrounded by sound

0:22:190:22:27

# Surrounded

0:22:270:22:29

# Surrounded

0:22:290:22:31

# Surrounded by sound. #

0:22:310:22:35

# I got my angel now

0:22:410:22:44

# It's like I've been awakened

0:22:440:22:47

# Every rule I had you breaking

0:22:470:22:50

# I'm surrounded by your embrace

0:22:500:22:54

# I can see your halo

0:22:540:22:56

# Halo

0:22:560:22:57

# Halo

0:22:570:22:59

# Oooh. #

0:22:590:23:00

Can you massage Mum's feet for me, darling?

0:23:000:23:03

Yeah.

0:23:030:23:04

'Caring for my mum for most of my life,

0:23:060:23:08

'I feel like that's bonded us a lot closer together.'

0:23:080:23:11

-Doing that just helps to get the circulation going.

-Yeah.

0:23:120:23:15

'I've seen her in, like, almost any scenario, happy, sad...'

0:23:170:23:20

Keep going.

0:23:200:23:22

'..angry, in pain,

0:23:220:23:24

'and I don't feel like a lot of other kids

0:23:240:23:26

-'would understand that...'

-That's it.

0:23:260:23:28

'..to see their mother unwell or in so much pain as my mum has been.'

0:23:290:23:33

Amazing.

0:23:340:23:36

The doctors would be proud of you.

0:23:360:23:38

Warrs, can you make Mum a cup of tea?

0:23:400:23:41

HE MOANS

0:23:410:23:42

Just boil the kettle and top this up for me, please.

0:23:420:23:46

Warren, you're going to spill my tea.

0:23:470:23:49

I'm not going to spill it.

0:23:490:23:51

Five years of tea balancing, I know what I'm doing.

0:23:510:23:54

SHE LAUGHS

0:23:540:23:56

Thank you, son!

0:23:570:23:59

I'm wondering whether this snow they're talking about

0:24:000:24:03

is going to happen.

0:24:030:24:04

It's got to drop to at least zero.

0:24:040:24:06

If necessary and I have to stay inside,

0:24:080:24:10

we could somehow get round it.

0:24:100:24:12

-Or put skis on my wheelchair.

-Yeah!

0:24:120:24:14

That would be funny.

0:24:140:24:16

You're quite special.

0:24:170:24:19

And if it wasn't for you, my life would be really boring.

0:24:200:24:23

Really normal.

0:24:240:24:26

Oh, thanks, darling.

0:24:260:24:27

# My mum's a friend, a close friend

0:24:400:24:43

# It's painful to see her like this

0:24:430:24:46

# Like being punched in the heart

0:24:460:24:49

# I wonder what it's like for her

0:24:490:24:51

# Every second, every minute of every day

0:24:510:24:55

# People say it won't make a difference to me how she feels

0:24:580:25:02

# But they're wrong

0:25:020:25:04

# When you're that close, even one tear of theirs can make you cry

0:25:040:25:09

# Especially me and my mum

0:25:090:25:12

# Seeing her in agony is painful in itself. #

0:25:120:25:15

Since there's only been two of us,

0:25:210:25:23

Mum has always been very special to me.

0:25:230:25:25

She's the only parent that I've had that's been

0:25:250:25:27

there for, like, everything.

0:25:270:25:29

Even though my dad doesn't live with me,

0:25:300:25:32

I still see him a lot, and he's still, like, a really great dad.

0:25:320:25:35

It would have been good if he was here, but he's not.

0:25:350:25:38

It puts a lot more pressure and, like, work onto me.

0:25:390:25:42

What would I do without you?

0:25:450:25:47

We're such a team.

0:25:470:25:48

# 14 and I'm still getting through it

0:25:510:25:53

# It's not hard when you were born to do it

0:25:530:25:55

# I'm not saying it's an easy life

0:25:550:25:57

# But it's a life that's worth the fight

0:25:570:25:59

# Stress, agony, pain, I guess it's OK when

0:25:590:26:02

# You know they're OK

0:26:020:26:03

# Normal life's just supposed to be this way

0:26:030:26:05

# But I guess it's OK You know what I'm saying?

0:26:050:26:07

# She needs me like a student needs a teacher

0:26:070:26:09

# We go together like a church and a preacher

0:26:090:26:11

# She needs me when she's happy or sad

0:26:110:26:13

# I guess being a carer ain't that bad. #

0:26:130:26:15

'Today, I'm going to visit my nan.

0:26:170:26:19

'She's one of the most caring people I've seen.

0:26:210:26:23

-Stop it!

-'She's a big role model.'

0:26:230:26:25

And what about me?

0:26:250:26:27

NAN LAUGHS

0:26:270:26:28

'I just want to see my mum happy, genuinely.

0:26:290:26:32

'It's hard to know she's in pain because

0:26:320:26:34

'she's so good at blocking it out.'

0:26:340:26:36

NAN LAUGHS

0:26:360:26:37

'Her being happy, it's just nice to see cos then I know

0:26:370:26:40

'she's OK for the time being.'

0:26:400:26:42

# The role I have as a carer

0:26:440:26:48

# It isn't hard at all

0:26:490:26:52

# I see these things every day

0:26:520:26:57

# They're like obstacles rolling my way

0:26:570:27:00

# I know the strength I have. #

0:27:000:27:04

'There's big news in my life.

0:27:070:27:09

'My mum's boyfriend, Steve, has moved in.'

0:27:090:27:12

-Here you go, Steve, these are for you.

-Thank you.

0:27:120:27:15

'I'm quite pleased with how it's worked out.

0:27:150:27:17

'Having him round makes it easier for me,

0:27:170:27:20

'and it's made my mum happy, and she hasn't been happy for a while

0:27:200:27:24

'cos of her condition, and she's just so excited about it.

0:27:240:27:26

'It's nice to see her happy with someone.'

0:27:280:27:31

# Take a look at my life

0:27:310:27:33

# It's different, but it's great

0:27:350:27:38

# I can't always have a kid's life

0:27:380:27:40

# But this my fate

0:27:430:27:44

# We're helping others through life

0:27:460:27:48

# These are the cards we were dealt

0:27:490:27:52

# If we play them right, we could win

0:27:530:27:55

# We are determined to win. #

0:27:590:28:02

Ah, sorry!

0:28:050:28:07

LAUGHTER

0:28:070:28:08

Oh, I'm sorry.

0:28:080:28:10

Right, OK!

0:28:100:28:11

Oh, finally!

0:28:160:28:18

-That was great.

-Ah!

0:28:180:28:19

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