My Wonderland

 Well, today was chaos… the good kind. The kind where you're sprinting between appointments like a travelling circus act, but somehow it all works out. And by the end of it, your heart is full, your kid thinks he’s a rockstar ( he is ), and you’re somehow still functioning despite running on absolutely no caffeine. But let me backtrack. Because before we talk about the magic of today’s new OT session, there’s a shadow that deserves its own spotlight first... On the way to Little Bodies, Kaedyn asked me a question about his old beloved OT. “Mum, why do you like Julian so much?” How do you explain a person who didn’t just do their job? They changed your life? Julian wasn’t just Kaedyn’s OT. He was part of our family. He still is! We all hold so much love for him, his wife, and his kids; they are every shade of warmth and brilliance. He showed up. Not just physically, but mentally, emotionally, practically. Kind. Grounded. Generous with his time, his memory, his spirit. ...

There was a time when therapy felt like war. Not the inspirational movie kind. The real kind. The one with screaming, resistance, heartbreak, and me standing in the hallway taking deep breaths as I fought back tears, telling myself this is good for him. Kaedyn has hated therapy more times than I can count. And honestly? I’ve tried to black out most of those sessions.... #PTSD But this year… something changed. Kaedyn started asking questions, and so we started having some pretty big conversations. The kind no parent really wants to have but knows they have to . The ones that pull no punches and leave your heart sore for days. “If you want to walk, buddy… you have to want it. You have to fight for it. You’re allowed to hate it—most people would. But five or ten years from now, you could be walking with a frame, or a stick, or maybe even unaided. That future? It’s yours to shape. We’ll help you, but we can’t do it for you.” I didn’t think it had sunk in. He’s 11. His world revolves ...

If You’re Like Me, the Family Organiser... You probably find yourself thinking, “I should write all this down in case something happens to me…” Well, this is my shareable list, the non-therapy stuff I wish I’d had in one place. The real-world, practical gems that make life a little easier when you’re juggling everything. Consider this a gift to all the other parents holding it together behind the scenes.  I figured it was time to write all this down. Because when you’re parenting a child with a disability, just knowing stuff becomes its own kind of survival skill. And yet, most of the best info isn’t in any handbook, it’s just in the abyss and you have to hope you come by it. So here it is. A working list of the helpful, practical, sometimes obscure things I’ve picked up along the way. Some of them might seem small, but trust me: in a world that’s not built for our kids, the small wins matter. HOLIDAYS! And suprisingly cheap or even free! Ronald McDonald Houses These aren’t just ...

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, ev...