(PLAYFUL MUSIC)
(SQUEALS)
(SQUEALS)
So, my name is Tess, and I am 9 years old.
I have a sister called Zoe. She's 11 years old.
Me and Zoe are very close —
more closer than all of the other sisters and siblings I know.
The love that they have for each other is second to none.
Zoe will often tell me that she loves Tess the most, (LAUGHS) and, you know, that's brilliant.
She's really close to me. She's not like anybody else.
And she's my favourite person who's not my mum and dad. (LAUGHS)
(CHUCKLES)
(ENERGETIC DRUM 'N' BASS MUSIC)
Captions by Glenna Casalme
www.able.co.nz
Captions were made with the support of NZ On Air.
Copyright Able 2018
(FUNKY MUSIC)
(MUSIC CONCLUDES)
(GENTLE GUITAR MUSIC)
(FOOTSTEPS THUD)
Normally I will wake up around 6-ish, and I'll come up and say, 'Zoe, time to get up.'
(CHATTERS SWEETLY) Good morning.
(EXCLAIMS)
Wanna do yoga with me? Yes.
I will say, 'Do you need to go to the toilet?'
And she'll do that.
And then we go into the lounge and see what the actual time is.
Morning. Morning, Mummy. Hi.
Hey, babe. Hi!
How did you sleep? Bad. Bad?
Good. Good.
Zoe, what would you want for breakfast?
Nutella, Marmite, honey or peanut butter?
Peanut Marmite.
Morning routines during school time is a crazy morning,
and thankfully I have an awesome daughter.
Tess will do the lunchboxes, get Zoe dressed.
I normally ask her to pack things for Zoe, so I know that they're done.
And then we kind of do things together, or Tess has to do it on her own.
Would you like some feijoa in your lunch today?
Yeah. Yeah? Yeah.
Zoe has a syndrome called Wolf-Hirschhorn.
It's very hard to explain.
I would just explain that Zoe has a bit of her brain missing.
That's why she, like,
can't talk as well as us.
How's that toast going down? Good.
Wolf-Hirschhorn is where they're missing part of their fourth chromosome.
That was one of those random Mother Nature experiences.
It wasn't anything that Bob and I are carrying.
So she would've developed it when she was 8 weeks, as an embryo.
When she was born, she didn't form her throat properly, so she was cleft-palate.
She had a hole in her heart as well.
She was epileptic for many years and has fortunately grown out of that.
She's got various issues with muscle development and bone development.
We're very luck with Zoe that she can feed herself.
The coordination of using hands and forks and knives is very difficult for her.
So there's lots of symptoms that they can treat, but she'll never be cured of Wolf-Hirschhorn.
Boop!
Boop.
Right, sweetheart, I'm gonna go and have a shower, so I'm gonna leave you guys to it.
Mm-hm. OK. There's you Weet-Bix, love.
Tess, you're OK? You're gonna man the fort?
(HAPPY MUSIC)
You finish your toast, please.
I am. Good girl.
We have quite a structured day to try and get everything ready.
Daddy.
Hi, Daddy! Good morning, all.
Bob's working a lot of evenings, and so he doesn't get home till very early hours in the morning.
I try and get the girls to do their own thing so Bob can sleep that little bit longer
and gets up a bit later to take them to school.
Good girl.
Put that in.
Zoe can't do anything on her own. She doesn't know how to go to the toilet on her own;
she doesn't know how to clean her teeth properly on her own.
She doesn't know how to brush her hair; doesn't know how to get dressed.
Here you go.
Me and Zoe are very close.
I help her get dressed; she helps me get dressed.
What would you like in your hair, Zoe?
A plait. A plait? Yes.
I love playing with hair. Any type of hair, whatever it is, I will do it.
Tess is my guardian angel.
She's like Mary Poppins — practically perfect in every way.
Tess is two years and two days younger than Zoe.
It was a very different relationship when Tess was first born.
When Tess was born, Zoe had just started to walk.
I think, up here, she thought, 'Yeah, man. Yeah, I'm the big sister.
'I'm gonna look after this girl. No problem at all.'
Zoe really enjoyed those moments, cos she sort of helped Tess crawl and would help feed her.
And then rapidly, Tess obviously overtook Zoe and became the older sister or the bigger sister.
One,... ...and two.
Now I think Zoe prefers the role of being the smaller sister.
You know, she gets away with a lot more — put it that way.
Bye-bye, sweetheart. No. Stay here.
I can't stay here. I have to go to work. Why work?
Why work? Yeah.
Cos I need to earn some money.
Rosa is the rock,
and as a mum, she's awesome.
Bob, he's second to none, really, when it comes to those girls.
Daddy!
They love hanging out with him.
But I'm quite serious. I try to be Fun Mum, but it doesn't work all the time.
Teeth? No.
The equation doesn't quite work out for me, being three against one.
You know, I really do try to get the girls on my side
by making Rosa's life as difficult as possible sometimes.
As much as I moan about Bob, he is really awesome. (LAUGHS)
He's a great guy. He's an absolutely fantastic father.
(SINGS ALPHABET)
Statistically, having a disabled child
raises those stats of being a single parent.
That looks awesome.
Never for a minute do I take Bob for granted.
See you, guys!
See you!
He's definitely much the yin to my yang.
He lacks stuff that I have, and I lack stuff that he has, and long may that continue.
(HAPPY, GENTLE MUSIC)
Bye!
Hello!
(CHILDREN SCREAM, CHATTER)
OK, Zoe, you have a good day at school.
Zoe and me go to the same school, and Zoe's in year six, so she's only got one more year.
D'you want me to drop you off?
I'm year five. I've got two years.
I'll come and pick you up after school, Zoe.
Normally, I would drop her off. I'm like, 'Oh, I just wanna stay here for five minutes
'to just make sure she's fine,' and then I'll go to my classroom.
Right, we're gonna do this one now. Show you with this one what we're gonna do.
Zoe has a teacher aide called Heather.
She is a very nice lady.
If Heather wasn't her teacher aide, then we wouldn't know exactly what to do.
Where's his mouth?
Where's his mouth? His mouth needs to go under there, doesn't it?
If I write something, she will go over the top of it. That's the limit that we're at.
Because she knows words. She knows her letter starts with—
What letter—? Where's the Z for Zoe?
Good girl. Where's an O? Where's an O?
O? O. Where's an O?
Good girl.
And an E, for elephant.
Oh dear! Here. Where's the E, for elephant?
Good girl.
This is my third year with her.
I would like to carry on with Zoe if I could. This is her last year at Witherlea,
so hopefully next year, when she goes to intermediate,
that I could follow with her — if they'll take me.
No! Oh, the— Oh. OK.
You don't want me to? No. Nah. (CHUCKLES)
When Zoe first started, there was quite a few kids that didn't really get why she couldn't talk
or why she was so tiny or why she had a bit of a different look.
And they did a little story on Zoe, and they put the story up in the different classrooms
and got the teachers to explain the story and who Zoe was.
(CHILDREN CHATTER IN BACKGROUND)
One of the good things is that Zoe's maintained a little cluster of friends
through her years at Witherlea, but, yeah, she just loves Tess.
And Tess would do anything for Zoe and is very supportive and sticks up for her.
Where d'you wanna go?
To sandpit? Yeah.
Come on.
Back, back.
Here! Stop!
Uh,... come!
So, normally, lunchtimes, Zoe will either come over to me,
or she will stay with her friends.
Yeah, sometimes Zoe does come here by herself. She normally runs off without me,
and then I'm like, 'Where did she go?' And I look around the whole school, and then I find her in here.
(CHILDREN CHATTER)
If I hear somebody saying mean words to Zoe,
I say, 'Please don't say that. It's none of your business.
'Just go away and leave her alone and leave me alone.
'I don't like you saying that. I feel very...
'It will hurt Zoe's feelings, even if it doesn't show, and it will really hurt my feelings.'
I worry about Zoe moving into her next phase and going into a bigger school.
She'll have a year Bohally on her own, without Tess.
I'm worried that she'll get bullied. She'll have to have a new teacher aide.
She will have her classmates, but they might not necessarily all be in her class.
So, yeah, there's a lot of things about that that I'm apprehensive about.
(BELL RINGS)
(EXCITED CHATTER)
(PENSIVE MUSIC)
(UPBEAT, GENTLE MUSIC)
Remember to get on properly.
Three, two,...
(GRUNTS) Good girl.
Horse riding. Good girl.
Hands off of the saddle. You don't need to hold on.
Zoe loves Riding for the Disabled.
It's something that is hers and she's good at and she really enjoys.
We got her her own riding helmet, and she's got little riding boots and jodhpurs and all kitted out,
and she looks super fancy.
We're gonna practise our steering. So do you see those big orange cones there?
Yeah. We're gonna go round the cones,
and you're gonna weave Rocket in and out. OK?
OK.
In and out. OK? OK. All right.
What do you say to Rocket?
Walk on, Rocket.
Good girl. Yup.
BOB: She's definitely got a lot more confidence, with regards to animals.
Everyday life, well, I mean, that's changing every day.
Last year she picked up Most Improved Rider.
You know, there's every possibility that she's heading towards the Special Olympics.
And that's our goal — definitely Zoe's. I mean, she loves riding.
Good job.
(CLAPPING)
No clapping. (TRAINERS LAUGH)
See, it's one of the benefits from when I became a stay-at-home dad five, six years ago.
Sit up straight, Zoe. Good girl.
Gave me a lot more opportunity to witness the development of Zoe in programmes like this.
You know, years one and two, when she was a wee dot,
we just, yeah, didn't realise that she would give us so much pride.
(SNIFFLES) LAUGHS: Oh dear! I'm gonna cry!
So slowly.
Very good.
It's hard. It's hard? Is it bum up high?
Up to the roof?
There you go. Good girl. High.
(CHUCKLES) It feels high.
You feel high? Don't worry. We've got you.
(MILD, FLOWING MUSIC)
I say, Zoe— Dinner time!
Are we gonna make dinner? All right. Do you want pizza?
Excellent.
What's this one?
Uh, chicken.
Chicken. Good girl. Good job.
My pizza! OK.
One on there.
Yeah.
I got a letter today from your dietician.
I know.
And we need to have a follow-up meeting
and make sure that you're putting on lots of weight, aren't we?
Yeah. So I have bought not only mozzarella,
but we've also got... What's this one?
What does that say?
Um... That's your favourite one, isn't it?
Brie. Brie.
Yeah. So we need lots of cheese on your pizza.
Now? Yeah. Tonight,
so we can help you put on some weight.
Is that OK? Yup.
Her immune system's pretty rubbish, but she, as a child, is much stronger.
And so one thing that we have to do is maintain her weight
so her body's dealing with colds and bugs and flu and all the rest of it as much she can.
So that is one concern with us is that with her poor immune system, that she'll pick up too many bugs,
and that's what will fail her, in the end.
...carrots and cucumber.
We try not to put too much cotton wool around her or anything.
She has to get bugs and to get stronger,...
Eat all your salad first.
...but just to monitor it and make sure that we're not, sort of, pushing her too much,
that she has enough rest, that she eats well and that she's not forced
into an environment where there'll be too much illness.
(DREAMY MUSIC)
(SPEAKS INDISTINCTLY)
Tuck in, Zoe? Yes, please.
When Zoe came out of my mum's tummy, they— Mum couldn't hold her.
They had to rush her straight to another doctor.
READS: My teddy has...
She was a month premature and very very tiny.
So we stayed in hospital for a couple of weeks,
and while I was in there, I'd have to wait for the nurses to feed her properly.
And when they came in to feed her, as she was crying,
the nurse saw the back of throat hadn't been formed properly.
And they did some blood tests.
When the results came back and we were sat with our paediatrician, who had the worst bedside manner,
he gave us this sheet of paper with the, you know, explanation of Wolf-Hirschhorn syndrome
and said, 'This is what Zoe's got.'
On the piece of paper, it was, she would look like she's got a face
like a Greek warrior helmet,
with the eyes quite wide.
They'd say that she was mentally retarded, physically disabled, epileptic.
He explained, 'If you have any questions, let us know. But it's likely that Zoe won't last a year.'
Myself and Rosa looked at each other, looked at Zoe
and was just like, 'Nah.' You know, we were saying, 'Nah.'
So Bob and I decided that we would pretend that she didn't have— (LAUGHS)
she wouldn't have Wolf-Hirschhorn and we wouldn't tell anyone, and it would just be our little secret.
It was quite a long time before we really came to terms with it.
And then it got to the point where it was actually really quite obvious that Zoe wasn't really growing.
And so eventually it just became part of life, and that was just the way it was.
'Hooray for Princess Pippa. Hooray for Prince George the Brave. Hooray!'
Goodnight, Mummy. Yup. See you in the morning, Zoe.
Bye.
Quite dark.
(GENTLE MUSIC)
(PLAYFUL GUITAR MUSIC)
So, in this big trash can
is all of Zoe's paper that she likes to rip.
She always goes under my bed, cos I have a stash of paper under my bed. Yeah.
So she always goes under my bed to get, like—
Paper. ...around that thick of paper.
And I sometimes catch her,... Heh.
...and I go, 'Oi! What are you doing with my paper?' Ha!
So, when she was a baby, she always had..
She never let go of her thumbs...
till she was around 1 year old, and then she finally let go of them,
and then her thumbs we, like, bent. Yeah. Bent.
And we've...
We're letting her, like, rip, play with Play-Doh and...
iPad! ...and play on her iPad, because that helps her with her thumbs.
(CHEEKY MUSIC)
I'm here.
YELLS: Let's make a fort! Yeah!
Yeah!
Zo.
I love the weekends, because I can have friends over, and all my friends are also very nice to Zoe.
So, like, my friends are, like, the best, best, best friend to Zoe as well.
Bit too big.
Socially, she's a very social child,
loves being around other kids,
likes playing and all the other things that an 11-year-old enjoys doing.
Do I have legs? GIRLS: No.
Could I be a pet?
No. GIRL: Not really, no.
Tess will make sure that Zoe is part of the game or whatever needs to be done.
OK, Zoe's turn. Three, two, one.
What are you, Zoe?
Cow.
(ALL CHEER, CLAP)
It'd be nice if she could have a few more play dates,
but I appreciate that it's probably quite hard for parents to take Zoe on, and the responsibility of Zoe.
So we try and have some play dates here. But it's very tiring for Zoe, again, having people come over,
so it's just getting that balance right of fun and rest.
OK, OK, OK, Zoe.
Let it go, let it go, let it go, Zoe.
Sometimes, if it's, like, every single day, it will get annoying,
because it's kind of like Zoe's stealing my friends from me.
It doesn't happen that often, but I'm fine with her doing it, as long as it's not every day.
Tess is pretty brilliant, but she's 9, and I think sometimes she knows that she needs the time out.
I think that's really mature and sensible than constantly having that pressure
and not giving yourself the time out and then letting it get on top of you and resenting it.
And so at the weekends, we separate them for a little bit.
We let them chill out in their rooms, whether they're on their iPad
or whether they're reading a book or doing some colouring.
Also, Tess has different activities that she does, like gymnastics, swimming, um, boxing,
which Zoe isn't involved in.
(LIVELY SAMBA MUSIC)
(MUSIC CONTINUES)
Tess got into gymnastics a couple of years ago, and it's kind of a real social network for her...
and a bit of connection with friends from school, and then friends from other schools in Blenheim too.
(LIVELY SAMBA MUSIC CONTINUES)
What? D'you want to do some yoga with me?
Yes. Yeah?
OK, so what do we do first?
Stretch nice up. Look up at your hands. (GRUNTS)
Give it a nice, big smile!
Deep breath in.
(EXHALES) And back down.
(CHATTERS) That's it.
How good does that feel? Better.
Better? Yeah.
High five.
Good job.
We try and do it a little bit more often, because it's really good for her legs.
And we need to sort of work with her knee, cos she has a bit of a tendency to hop when she runs.
Do you enjoy yoga with Mummy?
No. No.
D'you enjoy doing things with Mummy?
No. No.
With Daddy. Just with Daddy?
Yeah. Oh, that's nice (!)
(FLOWING, DELICATE MUSIC)
She... just loves water,
especially if it's warm water.
She started off in the bath and then just lying down on her back,
and she was, like, 'Swim, swim, swim.'
Mentally, for Zoe, activities like swimming and riding are immensely important.
That increases the level of independence that she can have.
She can learn to swim and enables us to say, 'Look, this is your doing, Zoe.
'It's not us doing it; it's you doing it.'
And that's the biggest thing with Wolf-Hirschhorn — it's this hope —
and you've just gotta let them do what they do, when they do it.
The will do it. Might not be today, might not be in a year, might not be two, but they will do it.
I'm glad that she has her own things, because, like, if she didn't have anything,
or if she just did stuff like me, I thought it would be a bit boring and a bit... not fun.
(PLAYFUL, DELICATE MUSIC)
(POP!)
Good.
Stay on the concrete, Zoe. I am.
Sometimes it can get a bit lonely. But then I just say, 'Zoe, do you wanna play this?'
She will say yes or no. If she does say no, I'll just think of another game to play,
or I just have to do it by myself.
So you're gonna be... Charlie or Koko?
Koko.
Koko? Yes.
We love making plays — a comedy one — like, because if it wasn't comedy,
it wouldn't be funny; wouldn't be enjoyable.
I want to make plays with comedy in it.
Zo (CLAPS), we're gonna do a play for Mum.
On what? Are you excited?
LAUGHS: No. Yes, you are.
So we'll be walking, and then we'll find some random stuff,
and then we're gonna play with that stuff, and then suddenly,
we're gonna be, like— we've swap bodies. Yeah.
BOTH: Tag. Tap!
What? Tag!
Oh boy!
(IMITATES MAGICAL TRILL)
(SPEAKS INDISTINCTLY)
What?! Why am I wearing this?
Uh, cos you...
What happened?!
OK, you go now!
They do have moments where they're not as happy with each other in the particular time,
but it's really few and far between.
No more.
GLUMLY: Zoe.
Tess gets quite frustrated, because Zoe doesn't really know how to play in a normal sibling relationship.
You know, certain things that they wanna do — like, if they wanna colour,
Zoe will often colour on Tess' picture, and that will drive Tess nuts.
But she won't do it to annoy her. She's just doing it because that's how she plays.
Lights, camera, action.
Hey, Koko, wait!
Whoa!
Ha-ha.
Why am I in Charlie's body?
I don't know. We've got to tell Mum.
Yeah. Come on!
Zoe has really taught all of us a lot more patience.
Don't get me wrong — I still have my moments where I am the most impatient person;
I've come to the end of my tether.
What an amazing thing to have in a moment like this.
But that's life and that's normality, and I think, at the end of the day,
if we can all tell each other that we love each other
and give each other a kiss and a hug, it's a good day.
Ta-da! Ta-da!
(LAUGHS) Oh, you're crazy. Well done, guys.
(GROANS) (LAUGHS)
Well done, you. (SQUEALS)
Did you have fun?
Did you swap bodies?
No. No.
Oh.
Ah! Ah!
Ow!
Hurry up, Zoe!
OK!
Rah!
Yeah! Good job, Zoe.
Oh.
Me.
(GRUNTS)
(GROANS)
Me.
(HAPPY MUSIC)
Who fancies a sit-down? Me.
Here. Come on.
If it was just me, Bob and Zoe,
I don't think Zoe would be who she is now.
I think Tess has really contributed a lot to how Zoe has progressed.
Whoa.
I certainly think that Bob and I have worked very well with Zoe.
School works well with Zoe. I think riding, music, swimming — everyone works really well with Zoe.
But Tess helps knot all of that together.
For Tess, Zoe's obviously drawn out all that positive energy
that Tess has, and all the good things that make Tess a good person.
Just love the fact that we have two daughters that are pretty cool to each other.
The bond that Zoe and Tess have, it's unbreakable.
I love her to the moon and back, a thousand infinity!
I always want me and Zoe to be best friends. No matter what, we'll still be best friends.
Always, always, always, always be best friends.
I have a huge amount of love and respect and pride for my girls,
but, yeah, I love both of them.
Don't make me cry! (LAUGHS)
Yeah. No, it's good.
(HAPPY MUSIC)
(MUSIC ENDS)
(DELICATE, JOYFUL MUSIC)
Captions by Glenna Casalme
www.able.co.nz
Captions were made with the support of NZ On Air.
Copyright Able 2018
Attitude was made with funding from New Zealand on Air.
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