Understanding Sight Loss – Lily-Grace’s story

Speakers:

  • Lily-Grace
  • Lily-Grace’s Mother
  • Teacher 1
  • Teacher 2
  • Interviewer

Lily-Grace’s Mother:

Lily-Grace was premature, she was born at 36 weeks. She was a tiny, tiny little thing. We had just been discharged and we were getting her ready to get her home and her eyes rolled back and she had a seizure. The only diagnosis that we were getting was “failure to thrive” and I remember saying to my husband that she has got a squint or there is something wrong with her eyes. She had had significant brain damage, she had optic nerve atrophy, she has nystagmus, inverted squints in all directions and there is marking on her eye. It was pretty dire. The first two years of her life we felt guilty that I kind of missed them, I didn’t enjoy them, because I was grieving.

Teacher 1:

If you pull the material down it… That’s it, good girl. That is your first stitch done, do you want to feel that first stitch?

Lily-Grace:

For what?

Teacher 1:

For your purse.

Lily-Grace’s Mother:

But as she grew and she would always smile, and she was always so happy, she was always so content.

Teacher 1:

You just stitch all the way round the outside.

Lily-Grace’s Mother:

It was so hard to be sad around her.

Teacher 1:

Beautiful, well done.

Lily-Grace’s Mother:

And then as you watch that child grow and how hungry and how enthusiastic she was for life, and how she enjoyed learning, it felt only right to encourage that. I wanted mainstream for her, I couldn’t get my head around the idea of a special school.

Teacher 2:

Hello Lily-Grace!

Lily-Grace:

Hello.

Teacher 2:

Come and have a seat. Pop your cane away.

Lily-Grace’s Mother:

So as it stands, she accesses every part of the curriculum.

Teacher 2:

Okay?

Lily-Grace:

Yep.

Teacher 2:

What would Walter like us to do today?

Lily-Grace’s Mother:

She will go there with her other teacher and then do her Braille.

Speaker on machine:Good afternoon, Lily-Grace. Today we are focusing on reading “I” and “D” in words. Let’s see how we can do.

Lily-Grace’s Mother:

She loves learning Braille. She is really hungry to learn but she is struggling unfortunately, because of her cerebral palsy, she is struggling to isolate her fingers on her right hand.

Teacher 2:

Well done. Can this one text as well? This right hand?

Lily-Grace:

A very helpful right hand.

Lily-Grace’s Mother:

She keeps trying, she doesn’t give in.

Teacher 2:

Grace?

Lily-Grace:

Yep.

Teacher 2:

Shall we practice that “I” that you find hard?

Lily-Grace:

Oh yep, that’s it. “I”.

Teacher 2:

Super! The word “you”.

Lily-Grace:

That is “y”.

Teacher 2:

Good!

Lily-Grace:

(Sings) Let’s get on with the “y”.

Teacher 2:

Super! Lily-Grace, 1 minute 39. That is your fastest yet! Well done!

Lily-Grace’s Mother:

My daughter has a particular love of literacy and that is something I really want for her.

Lily-Grace:

(Reading out aloud) Once upon a time there was a little girl called Little Red Riding Hood and she took some bread and some cheese to her granny, who wasn’t very well. She walked through the woods. And in the woods she met a big, bad wolf.

Lily-Grace’s Mother:

It seems to be a big thing, that it seems to matter to people what she can and can’t see. I struggle to see why it is relevant.

Lily-Grace:

(Reading out aloud) And then she went to granny’s house…

Lily-Grace’s Mother:

She is never known sight.

Lily-Grace:

(Reading out aloud) Little Red Riding Hood said: “What big eyes you have.”

“All the better to see with!”

Lily-Grace’s Mother:

So it is not something that she is missing, it is who she is.

Lily-Grace:

(Reading out aloud) And Little Red Riding Hood and granny got out. The end.

Lily-Grace’s Mother:

She is perfectly well. There is areas of independence that she doesn’t have that other children have. She independently, with her cane, gets the bus to school now and I think that one that she feels that she owns and that she really enjoys.

Lily-Grace:

(Laughs)

Lily-Grace’s Mother:

Right, bag on your shoulder. Shall we do bag on the shoulder?

Lily-Grace:

No, Mummy, I can’t do that.

Lily-Grace’s Mother:

She is so sharp, she is so on the button.

Lily-Grace:

Is Dad home?

Lily-Grace’s Mother:

No, Dad is not home.

So the blindness, it still seems like the smallest thing.

Lily-Grace:

Right, I’ll go and get dressed.

Lily-Grace’s Mother:

We might need to move this out of the way.

Lily-Grace:

Yeah, you do. It is very annoying being over there.

Down here I keep all my cloths that I suck at night. There is little starry lights. And this is my kitchen in here. My pretend friends were horrid Henry and Perfect Peter. And that was a bowl that Henry used.

Lily-Grace’s Mother:

She embraces everything. I can’t imagine her any other way and I wouldn’t change her for the world, because I think that is what makes her glorious.

Lily-Grace:

I love going to school. I love going to school. Don’t I, mum?

Lily-Grace’s Mother:

Yes, you do.

Lily-Grace:

I love it.

Interviewer:

Why do you love it?

Lily-Grace:

I love it because I can do Maths and English and I don’t have to do any boring stuff like… um…. Like watching my mum and dad’s favourite TV shows or something.

[End of transcript]