The exhaustion no one talks about

I don’t want to answer my phone anymore. I don’t want to open emails, scroll through texts, or even hear my name. If you’re calling, it’s probably another problem I need to fix, another fire I need to put out, another thing to add to the never-ending list of things I don’t have the energy to do. 

Aiden, fell at school last week. His 1:1 was standing right next to him while he was washing his hands. He fell anyway. Do you know what I found out afterward? They don’t even have a stander for him. A stander. A basic piece of equipment to keep my child safe and supported. 

I am watching him regress right before my eyes. The progress we worked so hard for? Slipping away. Every day feels like a new betrayal—by the system, by the school, by the very people who are supposed to help him. 

And it’s all on me. There is no cavalry coming to save us. No one else to fight the battles with the school, sit through the IEP meetings, file the complaints, or demand accountability. I am Aiden’s mom, his advocate, his voice. And I love him fiercely, but I am so unbelievably tired. 

I’m tired of IEP's that feel more like a performance than a plan. I’m tired of sitting in meetings where I know no one in the room understands the stakes. I’m tired of explaining—again and again—what he needs, as if I’m speaking a language no one else can hear. I’m tired of therapies that eat up every spare moment and leave us with no time to just be.

I’m burnt out. I’m so far beyond burnt out that I don’t even know what to call this anymore. It’s not just exhaustion; it’s a weight I carry in every breath, every step, every waking moment. 

And yet, here I am. Writing this. Because even though I’m done—so done—I can’t actually stop. If I stop, who will make sure Aiden has the equipment he needs? Who will fight for the services he’s entitled to? Who will stop him from falling again, from losing more ground than he already has? 

No one. I don’t have the luxury of being done. And that’s the most gut-wrenching part of all of this.

When you’re a parent to a child with disabilities, you don’t get to tap out. You don’t get to say, “I can’t.” You just keep going, even when you’re running on empty. Even when the system is designed to wear you down. 

But let me tell you something: just because I can’t stop doesn’t mean I don’t feel it. It doesn’t mean I’m not screaming inside. It doesn’t mean I don’t cry when no one’s looking. It doesn’t mean I’m not furious at a world that makes this so much harder than it needs to be. 

If you’re a parent like me—if you’re tired, angry, and hanging on by a thread—I see you. I know what it feels like to carry the weight of the world for someone you love. I know what it feels like to want to disappear but stay because you don’t have a choice. 

This isn’t the hopeful part where I say it gets better or that I have the answers. I don’t. I’m just as lost as anyone. But if nothing else, know this: you are not alone. And somehow, even when we’re at our lowest, we keep going. For them. For their future. For the chance that maybe, just maybe, one day, it won’t feel so hard. 

Until then, I’ll keep fighting. Even though I don’t want to. Even though I’m exhausted. Because I don’t have a choice. Because no one else will. And because Aiden deserves a world that doesn’t let him fall.