This isn't care... It's Carnage!

Today I had lunch with one of my closest friends. That sounds so normal, right? But in our world, “normal” is a damn miracle. Between hospital appointments, therapy schedules, equipment fittings, cancelled plans and total emotional burnout...getting to lunch feels like summiting Everest!

But today? We made it🤯

And somewhere between chicken karaage and coke, we talked about everything and nothing. That weird blend you only get with someone who knows your life down to the bare bone.

What sat with me wasn’t what we said. It was what we didn’t.

Her son has A-T. Terminal. Rare. Cruel. And constantly ticking with every day, week and month.

We talked about how we don’t tell the kids everything. Not yet. Because once they know, there’s no unknowing. There’s a mercy in not understanding, at least for a little while. That thin layer of innocence is the last thing we can protect. Once it’s gone, it doesn’t grow back.

I remember when she first found out. She went quiet. Ghosted the world, even me. I didn’t get it then, but now? Now I get it.

Now I know what it means to carry something so sharp, it slices through you silently.

Now I know what it means to break in absolute silence, because the sound of the world outside is unbearable. Everything keeps moving, even when your world has stopped and your insides become ash.

And through it all? She just kept going. No pity party.

She just showed up with the kind of quiet, lethal courage I now know by name.

And now? Now we’re both standing in front of the same collapsing system, screaming into the void because they've taken away essential services.

Let’s talk about the cuts...again! The “not so bad” 50% travel cut that was “reasonable,” “necessary,” “within scope.” Let me translate that for you...

Therapists can’t afford to come to school's anymore and our kids pay the price.

Kaedyn uses a Shifty to transfer. But when he’s too tired, we use a hoist at school. A literal machine to safely move him so he doesn’t fall, and staff don’t get injured.

But the hoist only works if the staff are trained.

And training only happens if the therapist comes.

And therapists aren’t going to be able to because it costs more than it’s worth.

So what happens? We get the call.

Mum, can you come to school? He needs changing.

Translation: There weren’t enough trained staff. The system failed again. Time to call in the human backup plan. Me.

And don’t get me wrong...I can do it.

I lift my 60kg+ son multiple times a day. I change him. I move him. I know him like I know my own heartbeat.

But I’m not the one who needs the training.

I’m not the one with red tape and guidelines.

I’m not the one being restricted.

And while I’m on my way? He’s waiting. Sitting in human waste and discomfort. Being reminded, again, that his body is too hard to accommodate.

Had someone told me when I was 24— Like REALLY fucking told me.

Not with a handout or a laminated pamphlet...

But stared me down and said “You’re going to be in the fight of your life. There is no cavalry. You are it! You will battle for everything, every therapy hour, every transfer, every ounce of dignity your child is entitled to. And if you don’t start raising hell right now, it’s going to cost you more than you can imagine.”

I would’ve stopped trying to play nice.

I would’ve burned the world down trying to obtain the meaning of "do better"!

And maybe, just maybe—Kaedyn would be further along...doing better.

But I didn’t know.

I was exhausted. Grieving the childhood he should have had. Running blind. Winging it with a toddler and a nappy bag full of rage and confusion. The boys childhood wasn't the joyfully filled years it should have been, it was chaos and disorder and my mind running spilling over. I wasn’t educated, I wasn’t informed, and I didn’t know what I was allowed to ask for.

And that cost us.

That’s the part nobody talks about.

The guilt of showing up… but showing up late to the real fight.

The shame of learning too slowly in a system that punishes delay.

We’re watching travel get cut.

We’re watching therapists pull out of schools.

We’re watching hoists gather dust while our kids wait in discomfort.

We’re watching rural families lose services altogether—because no one’s willing to drive there anymore.

And the worst part?

The silence of people who should be shouting with us.

The “advocates” who are waiting until it’s safe or politically convenient to speak.

The ones who built platforms off stories like ours… but are nowhere now. The same people who live this life but for one reason or another refuse to speak up even if it affects them or their children.

That silence is deafening.

This is not about convenience.

This is not about handouts.

This is not about “oh well, we’ll make do.”

This is about kids who are running out of time while we’re being told to be patient.

NDIS was meant to be a lifeline.

But a lifeline that arrives late isn’t help.

It’s a damn anchor.