I was only eighteen when my partner announced she was pregnant. I felt both excited and nervous – a mixture of emotions. I was ready for the adventure that lay ahead. Yet suddenly my focus began to shift. As I eagerly awaited my baby’s arrival, I was diagnosed with keratoconus, a condition which occurs when your cornea – the clear, dome-shaped front surface of your eye – thins and gradually bulges outwards into a cone shape. I was scared, fighting to stay well enough to be there for the birth of my child.
Bit by bit, my sight deteriorated. The doctors told me I had a brain tumour the size of a cricket ball. I’m a huge cricket fan, so this visual reference has always stuck in my mind. While I knew my sight would diminish, I held onto hope that it would one day fully return. I gripped onto my old life tightly, protecting it with all my might.
When my son Kodah was born, the midwife brought him over to me to hold. He reached up and touched me gently on the nose. I looked down and our eyes met. He had huge, blue eyes like pools of crystal-clear water. I still vividly remember them, and how he looked up at me when he hit me on the nose, as if to say, "Dad, look! I’m down here."
I still vividly remember them, and how he looked up at me when he hit me on the nose, as if to say, "Dad, look! I’m down here."
For the first three months of Kodah’s life, I could see him. I got to watch his face and his body change and grow. But as the days went on, he became blurrier and blurrier – until I couldn’t see him at all. I became completely blind and my sight has never returned.
It was a shock, because I always thought I’d recover my sight somehow. I never expected to be a blind dad. It was hard to adjust and let go of the life I knew as a sighted man. I dreamt of walking along the beach with my kids, swimming, playing football . . . It hit me hard. All these ideas of what I thought parenting would and should look like vanished. I had to come to terms with the fact that parenting was going to be different for me.
By the time Kodah was five months old, I got so low I tried to commit suicide. I was very young, only eighteen, and struggling with my new identity. Hitting rock bottom like that taught me something; I promised myself I would never get that low again. I came to realise it’s better to be here for my children.
After Kodah, we had a baby girl – Harlei – and then another baby girl, Rivah. I have never seen Harlei or Rivah. When my partner was pregnant with Harlei, I was scared of how I would cope not seeing her. I really struggled to accept myself and always focused on what I was missing out on instead of what I had. I thought that because I couldn’t see my children I would love them differently. I used to second-guess myself a lot like that. But, if anything, not seeing them has actually brought me closer to them. They’re everything to me, and I hope I am everything to them. I give them so much love and am a great, present father.
In my mind I have a visual of each of them. I used to sit there when they were babies and ask my partner to describe certain things about them to me. As I read them their bedtime stories and tucked them in, I would touch their nose and chin and get a visual in my mind of what they look like.
In my mind I have a visual of each of them. I used to sit there when they were babies and ask my partner to describe certain things about them to me.
As you lose one sense, the others tend to pick up, but my sense of smell never got stronger, only my hearing. For this reason changing nappies was hard. I had to do it all by touch. The early years were challenging. Making up bottles was particularly difficult. When the baby was crying, I couldn’t move as quickly as I wanted to. Luckily, they have come up with a bottle-making machine that allows you to pre-save your settings. It tops the formula up and puts the right amount of water in.
When my kids were young, I was very cautious. I didn’t take them out unless I had support. I always needed my partner, mother or brother with me. With them to support me, I felt safe with my children out in the community. I occasionally wore one of the kids in a baby carrier, but I was always worried I was going to trip and fall on them, so I only ever did that when I had to. To be honest, we caught a lot of taxis, so in the end we did a limited amount of walking together.
My son was a late talker. At two he couldn’t really talk; if he wanted something, he would simply point to it. But I obviously couldn’t see that, so it was a lot harder for me to communicate and interact with him.
On one particular day I had my cane and I asked him, "Do you want to go to the park?" I could hear him stomping his feet: he was all excited, running around buzzing like a bee.
He then ran and got my shoes, put them in front of me and said matter-of-factly, "Shoes." I realised in that moment that he knew I couldn’t see.
When my three-year-old daughter, Harlei, wants something, she knows she has to come and grab my hand and walk me towards it. Lately she’s been walking me over to the fridge as she says "Milk" or "Juice." It’s incredible how kids adapt.
My children are still young. They know Dad can’t see, but it’s normal to them. My eldest, who is now ten, is asking more questions though, and sometimes he says he wishes I could see. He sees other parents at school and how the dads interact with their children. It doesn’t mean he loves me any less, but he watches his friends kicking a ball with their fathers and he naturally compares it to our relationship. I just reassure him: Dad is still here, Dad still loves you. I just do things a bit differently, that’s all.
It doesn’t mean he loves me any less, but he watches his friends kicking a ball with their fathers and he naturally compares it to our relationship. I just reassure him: Dad is still here, Dad still loves you.
Through having a disability, I have shown my children that having barriers in your life doesn’t mean you have to be held back. I show them you can strive for whatever you set your mind on. They treat people with disabilities with respect, because they have a greater understanding and awareness of diversity in all its forms.
We are also Aboriginal. I am a Wiradjuri man. Both my parents are Aboriginal. My father passed away when I was nine, so I know what it’s like to not have your dad around. This is one of the reasons I try to be as present as possible with my children.
My kids often say, "We are not Aboriginal." There are a lot of Indigenous kids at their school and there’s a lot of stigma if you’re fair – people say you’re not really Aboriginal. I try to drum into my kids that it’s not about skin colour. Their nan and pop are dark, but even so, my kids often don’t feel Aboriginal.
I make sure we have representation of Indigenous and disabled people in our home, and I constantly keep the conversation going.
For me, I think a lot of the challenges come from outside the home, from broader society. A lot of people are so quick to jump to assumptions. They often say, "Wow, you’re a dad and you’re blind!" I roll my eyes and say, "Yes, and . . ?" And then they respond, "Wow that is amazing, you have three kids!" I have even had people ask, "But how did you have them?" I just answer, "Exactly the same way you had yours!"
I say, "I work, I own my own house and I do everything any other person does." But they still say, "Wow, you do all that and you’re blind!" I think it’s purely lack of education and lack of representation of people with disability.
I have even had people ask, ‘But how did you have them?’ I just answer, ‘Exactly the same way you had yours!’
I have been discriminated against, laughed at, stared at. Sometimes I’m not even allowed to eat in a restaurant with my family because I have my guide dog with me. All I am after is a family meal. I get so frustrated, but I try to stay calm and simply say, "Okay, so you don’t want my business?"
While society places continued challenges and barriers in the way of people with disability, I would tell any vision-impaired person wanting to have kids that anything is possible. You just have to go into it with an open mind. You also have to have patience; that’s definitely key to successfully parenting with vision impairment.
For instance, when your baby is crying for a bottle, it might take you longer to find the bottle – so you need to be patient and stay calm. It’s challenging, but rewarding at the same time.
You also have to have self-acceptance.
It’s taken a long time to get there, but now I say I am a proud Aboriginal person with a disability. If I can empower someone by sharing my story, well, that’s a real positive. Everyone says, "Oh look at him, an Indigenous man with a disability who’s a parent. He is so strong, he is so brave!" I like to be realistic. There have been some hard times for me, that’s for sure. Some highs and some lows: that’s just life. I adore my kids, though; they are my whole world. It took a long time to be comfortable with my new identity, but I owe it to them to be proud of who I am.
Brian Edwards is a proud Wiradjuri man and a disability advocate with Absec and the NDIS. Before becoming blind, he played rugby league for more than ten years with the Redfern All Blacks. Now he plays cricket with people who are blind. He is a DJ and has travelled the world performing.
This is an edited extract from We’ve Got This, edited by , published by Black Inc. and is available where all good books are sold.
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