If someone had told me years ago I would become an 20-year advocate for disability and a leader in the national disability sector, I probably would’ve laughed—or cried. As a new mum, I was full of hopes and dreams. But like most new mums, the fear was quietly waiting under the surface.
When I was pregnant I had dreams about disability. I would wake up and have to remind myself that everything was fine. My babies are perfect, I’d think. They’re healthy. We’re lucky. The truth was: the idea of disability scared me. It was unfamiliar to me. And unpredictable. I didn’t know how to hold space for something I didn’t understand.
But life, in its complete unpredictability, launched me face first into the disability world. It has been a wild ride but over time—through love, learning, and a whole lot of tears and triumph—I transformed into someone completely different. I moved from fear… to acceptance… to empowerment. And not just for myself, but for Aysh too.
Fear: Where It All Begins
We all know what it is like to be scared. Fear is raw, real and it makes us human. It is really there to protect us, but it can also knock us on our butts! In the early days, the fear kept me overthinking, it made me uncertain; and it constantly had me asking: am I doing this right?
Fear is sometimes about danger (yes being chased by a tiger is real fear!), but it can also be about the unknown. In those early days, fear was about getting things wrong, not knowing enough, or of being judged. I didn’t know what our future would look like. This fear became part of the decisions I made, the relationships I had, and my confidence as a mum.
At the time, it seemed like a weakness. But now that I am looking back, I can see that my fear didn’t make me weak. It is what made me human. And what has driven me down the path I have taken – even if it wasn’t always willingly.
Acceptance: The Turning Point
Acceptance of Aysh’s disability didn’t happen overnight. And sometimes I wonder if I am there at all. When I look back, there have been some great moments; moments that have made me the person I am today. All of the therapy sessions, the school meetings, the meltdowns and recoveries – they all come together to define who we are and the strength we have.
Throughout it all, I had to stop trying to change him. Or to feel bitter and angry about our situation. I stopped fighting reality and started seeing who we were becoming together. Looking back, I am not sure that the new mum I once was, could have imagined the strong woman I became as Aysh’s mum.
From Fear to Acceptance: What Helped
Finding acceptance wasn’t easy. And it didn’t happen overnight. Sometimes I still wonder what could be different. Along the way there have been a few things that have helped.
- Staying in the moment. It can be so tempting to think so far ahead. To wonder whether your child will one day get married or have babies of their own. But thinking too far ahead can turn you inside out. You can become caught up in ‘what if’s’ and stressed about things that may never eventuate. Focus on where you are at in your journey and maintain an open mind about the future.
- Be kind to yourself. There is no guidebook for this journey. Each of us has a unique path that is shaped by our children, our own background and history, and the resources and supports we have access to. Do what you can, but be kind and don’t put too much pressure on yourself. A missed appointment here or there is not going to make a lot of difference.
- Seek out support from others. Throughout our journey we have learnt as much from fellow parents as we have from professionals. When we can reach out and lean on others during the tough times, we can get the support we need to get through. There is no shame in asking for help.
- Challenge old beliefs. I thought I knew everything. As a parent of a newborn, i knew better than my childless friends. And as a parent of teenagers, I knew more than my friends who had preschoolers. Along the way I built beliefs about disability, and disabled people, that have continued to change over time. Continue to question your beliefs, be open minded to learning from others. Sometimes they will teach you new perspectives you may have never considered.
I don’t think there is ever an end point. I think as humans we are continually learning and growing in who we are and how we see the world. Learn from each challenge – each little moment of bravery adds up.
Empowerment: Finding my strength
Empowerment didn’t come from having all the answers—it came from trusting myself even when I didn’t.
I began to advocate—not just for Aysh, but for others too. I found my voice in meetings, policy discussions, and community spaces. I realised: We don’t have to wait for someone else to fix things. We can lead change.
Empowerment is messy and imperfect, but it’s also thrilling. It looks like showing up, setting boundaries, asking hard questions, and backing yourself.
It’s about believing: I can do this. We can do this.
Everyday Tools for Empowerment
These are the things that helped me (and still do):
- Setting goals that mattered to us—not what others expected.
- Learning new skills to navigate systems and support Aysh.
- Speaking up, even when my voice shook.
- Connecting with people who understood our journey and lifted us up.
- Choosing growth, even when it felt hard.
I’m still learning, still growing. But now, fear doesn’t hold the same power. It still visits—but I know what to do with it.
Challenges Will Come (and That’s OK)
Let’s be real: this path isn’t easy.
- Self-doubt creeps in, especially when things get tough.
- External systems aren’t always kind or inclusive.
- Fear of failure can be paralysing.
- And yes, imposter syndrome still knocks on my door.
But I’ve learned to meet these challenges with compassion and grit. I remind myself: Look how far we’ve come.
In Closing: Embrace the Journey
If you’re somewhere on this path—from fear, to acceptance, to empowerment—I see you.
You are not alone.
Your fears are valid. Your progress is real. And your strength? It’s already within you.
Growth doesn’t come from having everything figured out. It comes from showing up—again and again—with an open heart, a curious mind, and the courage to keep going.
You don’t have to be fearless to be empowered. You just have to take the next step.
We’re in this together.
