On Friday 27th October 2023 I was invited by the Black and White Committee to be a guest speaker at their annual fundraising gala event. They have been raising funds for Vision Australia’s children’s services for 87 years. I have spoken at several Black and White Committee events and it was honour to be invited back. This is my speech. You can watch and listen to it here> on YouTube (poor quality video but sound is good and subtitles included).

I’ll never forget the moment a little old man with a long white beard and black framed glasses sat on the window sill of the newborn intensive care unit in Wellington Hospital in NZ, and delivered what felt life the final blow to a harrowing diagnosis to my six week old newborn baby girl. I felt so alone.

I had to ask him, “Are you saying my daughter is blind?” He nodded, unable to look me in the eyes.

I’ll never forget getting on the plane to move back home to Australia , leaving my daughters father. I had never felt more alone.

I’ll never forget sitting my daughter on my knee in the ophthalmologist’s office as he waved a toy with a flashing light in front her eyes to confirm a diagnosis I was learning to wrap my head around - Septo Optic Dysplasia with Optic Nerve Hypoplasia, Panhypopituatarism, Autism and an intellectual delay. By then, I knew how to be alone.

And I’ll never forget reading the reply from Vision Australia with a date for an initial assessment and meeting Lauren, an early intervention and play therapist who walked alongside me, alongside us, for the first four years of raising a child as a single mother to a blind, autistic and developmentally delayed baby.

There is a great loss of relationships and community when you bear a child into the world with a disability. We couldn’t engage in usual play, access community based services, buy colourful toys with flashing lights, or enjoy outings with friends and their kids. The momentary pleasure of connecting with other parents, none of who have any idea of what it’s like to raise a child living with vision loss, forever complicated by the stress of trying, wasn’t worth the effort. It was difficult to nurture friendships and create structure and routine within a neurotypical world with a neurodivergent child. But over time I came to realise that we did have a community, it just wasn’t where I was looking for it.

I’ve lived through many moments of great magnitude raising my now 14 year old daughter who is physically, neurologically, cognitively and sensorily challenged, but has the heart of a lion, the sass of a teenager, the blueprint of a musical genius, and the memory of a savant. Many of those moments felt tragic, and more often than not, I endured and held them in the silence of my own heart, alone on the living room floor with a phone against my ear, or at the side of a hospital bed, or in a therapy room with no windows.

But for every tragedy, with an open heart and the desperate will for possibility, there have been equally, if not many more moments of wonder and opportunity. Moments that incite the greatest capacity for joy, celebration, gratitude and awe, witnessing my child move through great struggles that blossomed into her, and our, life’s greatest achievements.

They might be small, in the context of what some would consider a successful life in the neurotypical world, but they’re life changing for my daughter, Mackenzie, and they’re life changing for me.

Every single thing my daughter can do has been meticulously taught, step by step, guided by a community of angels who do have the strength and valour a little girl and her mummy needed to overcome a diagnosis that felt too big to hold alone. This community has been holding us up, rooting for her, supporting her, and me, since the day the doctor said things to me as a new mum that are etched into the fibre of my being.

Nurses
doctors
itinerant support and literacy teachers
play therapists
occupational therapists
physiotherapists
music therapists
ophthalmologists
horse riding therapists
psychologists
speech therapists
vision support therapists,
orientation and mobility specialists

The long list of ‘ists’ have been there with us - as part of our blossoming community - and have been our shoulder to cry on, our cheer leaders, our confidants and our go too for the how, what, when, where and why of raising a child living with blindness and additional complex needs. And in that sense of community, I no longer felt alone.

There are many books I could have read but on the spectrum of life and disability, there wasn’t one book that fitted my child, but the specialised support we’ve received from Vision Australia’s children’s services, have held us, held me, through the murky waters of parenting a child with vision loss.

It is because of organisations like VA, committees like the BW Committee, and people like you who are an extension of a diagnosis that we received in a small hospital room far from home, 14 years ago, and have lingered, so subtly on the surface, but with such force in the depth of our journey. There is an invisible but tangible thread that ties us together - we have been and are inextricably linked. Many of you have been a part of my sense of belonging, and my child’s potential for a life fully lived and loved, without either of us knowing it. Your presence, has made a difference, of the most impressionable kind.

However you’re invested - physically, energetically, emotionally, socially, financially .. you matter to children like Mackenzie, and to mothers, like me. You help us belong somewhere. I was made to feel a part of something when everything felt like it had been stripped away and I was left in a desolate land, without a way back home.

Belonging … one of the fundamental human needs.

And it’s because of this belonging that I felt confident and capable of adapting within the confines of a diagnosis that denotes limitation, into a life of possibility and opportunity.

It is because of VA, the BW committee and you, that I’ll never forget those difficult moments, but more importantly I’ll never forget,

The first time she spoke when I told she never would
The first time she walked at the age of four when I was told she never could
Listening to her read braille for the first time
Receiving my first Brailled mother’s day card
And being able to read that mother’s day card - I always wanted to learn a new language, I just never new it would be braille

I’ll never forget the moment she first

Dressed herself, brushed her teeth and unpacked her school bag after months of learning how to
The first time she ate a meal without her feeding tube at five years of age
Winning a horse riding dressage competition with Riding for the Disabled Association
Playing a VoiceOver role for a cartoon about bullying and inclusion, targeted at kids with autism, played by kids with autism
Figuring out how to play Bach by ear on the piano with her floppy little fingers
Attend an overnight camp
Independently make calls and texts to her favourite people
And being supported by a leadership team within VA as we caravanned up the east coast of Australia for six months to fundraise for VA, which then inspired my children’s book, The Adventures of Kenzie-Moo, which is all about the adventures of a blind girl and a road trip she took around Australia with her mum

My daughter, and all her unique and variable qualities have been the greatest challenge, and the greatest gift of my life. When we feel safe and secure in the loving and intentional care of others, everything is possible.

Thank you for being part of our community. Thank you for being part of our possibilities. You make a difference.

SPEECH FOR VISION AUSTRALIA FUNDRAISER