Acacia: We've had genetic testing there's no like name for what Nova has.
We had to fix her hearing, breathing, speech and her eating.
With a child with special needs,
you don't have an idea of what their future holds.
I found myself looking online and the video that
spoke absolute crazy amounts to me was a blogger called Marimar.
Acacia: She’s so cute, she’s so sweet.
There are so many.
Nova is your standard two year old right now.
She is full of energy. She loves to dance.
She loves the music. She loves the photos.
Joseph: And being around people being the life of the party.
Acacia: Yeah, life of the party. That's our little girl.
Nova was born with a cranial facial difference.
And currently, her condition is undiagnosed.
We’ve had genetic testing. So there's no like name for what Nova has.
It affects her hearing, breathing, speech and her eating.
So that's why we had the tracheostomy and her G tube.
She has severely reduced hearing
because she has the jaw crushing her airway and,
and the palate affecting things like speech and eating and swallowing.
And she is not able to do all of those things that we just naturally do ourselves.
Wow.
So we were just setting up Nova’s feed,
she's fed by a pump, and G tube in her a stomach.
Yeah, and this side and lunch time.
Joseph: It seemed all normal at first,
we had a scan that show that she might have some facial differences.
We thought that would be quite small.
Acacia: We didn't get to bring Nova home for 101 days.
Joseph: When we first left the hospital with Nova, we felt so
good to be free because we felt so confined so long.
But also terrifying that we might not know what we’re doing.
Acacia: This is on us now … Joseph: It’s quite great,
like this is how all parents feel when they first get hurt.
Acacia: Stand up please. Good girl. Hey,
do you want to take one of me?
The biggest sort of hurdle that we've had,
apart from all of her surgical procedures and going through that
is just a communication, like it's been so challenging to learn a completely new language.
To be able to communicate with her.
Joseph: We’ll read a book.
Acacia: She’s not able to have her jaw opening wide enough because
of the small jaw were l not able to fix her palate, which is delayed, which means her speech is delayed.
Red flower, red one flower her signing.
So because she's signing a lot, and it just means that we have that
communication with her. And that's been so challenging,
because for the longest time there's been that no back and forth at all.
Her signing is like increased tenfold.
Joseph: You can now show her one new sign and she’ll repeat straight away almost remember?
Acacia: Can you smell, can you smell oh nice.
Yeah, I would say her biggest achievement, was her walking,
that was major because I didn't we weren’t sure if
she was ever going to figure that out.
When we finally got her to walk, it was like whoa, amazing.
With a child with special needs,
you don't have an idea of what their future holds.
And so I found myself searching online for videos
and just to sort of have an idea about what's next.
What would the future have for us and for Nova.
And you know, are there people out there living a life like this that are happy?
And I found myself on the BarcroftTV YouTube channel.
The video that spoke the most me was a beauty blogger called Marimar.
She has a hearing impairment, she has facial differences and a Trekkie,
and she's also 21 living her best life.
I mean, she has, she explains that she has hard days
but all in all her family are supportive, and she
doesn't know she's not brought back by this difference, at all.
She is just herself. That's all I want for Nova.
Acacia: She's so cute, she’s so sweet.
You look so cool.
She loves the camera. She loves to entertain. She loves people.
Joseph: So why we hold her back?
Acacia: Yeah, why will we hold her back? We want her to feel like she can do anything.
So we started out with Instagram probably about a year ago.
Joseph: And I think people are quite drawn to her.
Acacia: Yeah, people are just naturally drawn to her.
The page has evolved over the last year.
It's become more of an awareness page for people like Nova.
People with facial differences and educating people
that like our daughter Nova is first and foremost,
just another little girl just like all other two year olds.
I want to educate people that you don't have to be afraid to say hello to
someone like Nova. You could honestly just say hi, she'll say hi back.
She'll probably run up to you first and give you a giant cuddle.
Do you want to go to the park Bubba?
We've started to think about Nova’s future and …
Joseph: Schooling. Acacia: School and surgeries.
And that's sort of a little bit scary.
We sort of just deal with what we've got in front of us right now.
One day at a time. We'll figure it out when we come to it.
I hope that we can change people's perception of normal because you know, this is our normal
and may not be your normal.
And it may be different to your normal but I just want people to see,
what that is for us.