"At just 28 years old, my daughter Kirby was suddenly unable to talk or move."

Five years ago, my daughter Kirby – then aged 28 – was diagnosed with a brain tumour. The next morning, she found herself in surgery.

Kirby went in to have an MRI for migraines and never came back to the house she called home.

Usually, if someone is diagnosed with a tumour, there is time to prepare for what comes next. None of us had any idea how drastically our lives were about to change.

In 2014, Kirby underwent a 10-hour operation to remove the tumour and, 20 minutes later, suffered a stroke to one side of her brain. Three weeks later, she experienced a second stroke to the other side of her brain.

Watch: The warning signs to look out for when someone is experiencing a stroke. Post continues after video. 

At just 28 years old, my Kirby was suddenly unable to talk or move from the head down. We didn’t know whether she was going to make it.

I remember the months vividly when Kirby went first into the intensive care unit, then in the ward – it was one of the hottest summers on record and we spent it all in the hospital room.

As a mother, it’s hard to describe the feeling of seeing your daughter in such a helpless state. It’s so intense, and the pain is physical, as well as emotional – almost like a sharp piece of ice going through your heart.

Mothers always want to fix things. It was easy when she was younger – a Band-Aid would repair a grazed knee. But, in those early days, I didn’t know how to make it better because there was no “Band-Aid” or easy solution for Kirby.

It felt like I wanted to wake up from a dream that consumed my every thought. Whenever there was a brief moment of distraction, like waking up to the sun shining, we would quickly be reminded of our reality. There were times when I thought we would never laugh again.

Kirby and I always had a typical mother-daughter relationship. We are both teachers and we were able to understand each other’s work and day-to-day challenges. A young professional, she was dedicated to her job and the children she taught. 

Kirby lived just up the road from us before it all happened; we could walk to each other’s houses. It also meant we could storm out of each other’s houses after an argument.

I like to describe Kirby as a straight shooter who wouldn’t take people’s sh*t. She would say what she thought when she thought it.

One of her passions was trivia – she would always win. She has an amazing memory and even after the damage to her brain, her memory is still incredible. She says things like, “remember when I was five years old and this happened?” Things I don’t even remember sometimes.

That night, almost six years ago, just before she went into the operation, she wanted to give us the passwords to all her credit and debit cards, “just in case”. She can still remember every single one of her passwords.

Following the strokes, she was forced to live in an aged-care facility because of her high-care needs. Even with her brilliant memory she says she can’t remember most of her time spent in the home because she has tried to block out that part of her life completely.

Seeing Kirby living in an aged-care facility was the worst time of my life. My mother was also in a home at the time, which was a strange feeling: seeing them both there. 

With Kirby’s severe communication difficulties at the time, it made it hard to connect with her and understand what was going through her mind. Here was Kirby, once fiercely independent, needing care 24 hours a day. I would look at my daughter next to people in their 80s and 90s and my heart would break – she was the youngest patient by about 50 years.

Kirby didn’t feel she belonged there. The environment was so sombre and staff weren’t trained to support her rehabilitation, meaning her progress was much slower than it should have been.

We knew deep down that the facility was not the right place for a 28-year-old, but were continually told by professionals that this was the safest place for her.

I knew I had to hold onto hope and I would tell Kirby every day: “don’t give up hope”. That’s what kept us strong.

Mia Freedman chats with Marilee Mai about finding out her 5-year-old daughter has brain cancer. Post continues after podcast. 

Our family spent the better part of 2014 fighting to get Kirby rehabilitated. When aged care was offered as the only ‘safe’ alternative, we had no other option but to convince Kirby to take the chance at receiving rehabilitation from the adjoining rehab centre.

The National Disability Insurance Scheme came on board, but there was much argument as to which system paid for Kirby’s various needs: health or the NDIS. It was a slow process to receive funding for house modifications so that Kirby could come and live with us.

The moment she came home was a feeling of intense relief.

Even today we are still fighting the system – and not just for Kirby, but for all people who suffer from a disability, who struggle for their voices to be heard.

What worries me today are all those people who are in Kirby’s situation, in a nursing home barely able to move or communicate, with no one fighting for them. Somewhere in Australia, there is a Kirby still living in a facility, who didn’t get the chance to go back home.

Communication is a basic human right and we need to find other methods of understanding people’s needs when they can’t speak. 

Recently, we were able to change the tax laws with the ATO for people with a complex disability to keep their pension when receiving other benefits. We refused to accept just an exemption for Kirby’s situation because if you don’t change it for everyone, then what’s the point?

When Kirby moved out of aged care, her rehabilitation progress flourished.  Every day she is getting better and better with her communication. It’s completely opened our eyes to how important communication is to quality of life and how easily we take it for granted.

She has worked with many speech pathologists over the years that have been instrumental to her progress. Kirby began communicating using electronic devices and other aids, but she was stubborn; she was always determined to speak again.

People like Kirby who have a communication difficulty are often misunderstood as having an intellectual disability. It’s an “invisible” challenge. People will talk to her at a slower pace or in simple language, which is so frustrating. There needs to be more awareness and acceptance of disability in our society.

Kirby says she wants to be an example of overcoming disability for others. She spoke at Parliament House in 2017 about her experiences, particularly in aged care, and is an ambassador for the Summer Foundation, an organisation that works to stop young people being forced to live in nursing homes.

Kirby is back volunteering at the school where she used to work and the kids adore her. She has also moved out of our home into specialty-built accommodation and is living more independently, just as she used to. Her motivation is something that has always remained, through and through. 

The moment I knew we were going to be ok is when I saw Kirby’s determination soon after the strokes.

At first, she refused to use a powered chair because she didn’t want that to be a sign that she would never walk again. She was always going to walk, always going to talk. Now she is realising those goals and the Kirby we used to know is returning.

When Kirby built up her communication skills enough to argue with me again, I knew my old Kirby was back. During her rehabilitation over the years, she started to lose some of the fire in her personality and became very agreeable. Agreeing with your mum 24/7 isn’t normal for anyone.

The first argument was over something small, like most mother-daughter fights usually are. She had told me off for pestering her about using her left hand more to help with the rehab. While most people don’t look forward to fighting with their daughters, for me it was a step forward.

Looking back on the journey, it’s a blunt reminder of how unpredictable life can be. Disability can happen to you. It can happen to anyone. There has to be a place for people to go where they have a good quality of life and can improve, not where they are hidden away because they don’t belong.

At my lowest points, I would go to bed at night and not want to wake up the next day, just so I wouldn’t have to face the sadness. There was a lot of grief after Kirby’s brain trauma. I grieved for the life Kirby should have lived, of what she wanted to achieve, but might not. 

She wanted to develop in her career as a teacher and one day have her own children. Kirby is still determined to make her dreams come true. But, in a world focused on perfection, it will be so much harder for her. People with disability are so often viewed as imperfect.

When someone parks in a disabled spot who doesn’t need it, or uses the disabled toilet, or sits in the front seats at the cinema when they have 200 other seating options, remember that Kirby and others like her don’t have another choice.

Before you make the assumption that because a person cannot speak clearly they also cannot think, be patient and make an effort to hear their message. We can all be a little more considerate to make a big impact on a person’s day and life.