This notebook is a living record of Hannah-Rose’s journey.
It’s where her story continues beyond the beginning. A place to share updates, moments of progress, challenges, hospital days, small victories, and everything in between. Some entries are informative, some are emotional, some are simply real. All of them are written with honesty and love.
Hannah-Rose was born with arthrogryposis, and while that diagnosis is part of her story, it does not define her. These entries reflect her strength, determination, and the reality of life navigating medical systems, therapies, and everyday family life with a child who does things her own way.
The Notebook
This notebook exists for connection. For families walking a similar road. For those wanting to understand more. And for anyone who has followed Hannah-Rose from the beginning and wants to keep walking alongside her.
There is no right place to start. Read from the beginning, the latest entry, or wherever feels right to you.
The Question that collapsed America.
After our meetings, calls, and new connections, the plan to get to America felt like it was finally becoming something real. We had support. We had advice. We had direction. And slowly, piece by piece, we started lining up what we needed to make it happen.
We contacted our GP to request a letter supporting travel for medical reasons.
Adjusting after surgery.
Parent Support & Mental Health
When you hear the words Arthrogryposis for the first time, the world tilts. It’s not just a diagnosis it’s a landslide of questions, fears, and the sudden pressure to become a full-time advocate, medical translator, and emotional anchor before you’ve even finished your morning tea.
The things we carry
There’s the obvious stuff we carry the kind of things every parent knows by heart. The baby bag that somehow weighs more than the baby, packed for every possible situation. Paracetamol and Brufen for before casting appointments. Teething gel Jack and Jill’s, the one that actually helps. Extra nappies and bottles.
Supports, Advocacy & Grace
It took me a good two weeks to even say the word arthrogryposis. After hearing the devastating news to abort, it felt like I didn’t sleep for weeks. Everything felt heavy. The air, the noise, even time. I remember sitting there wondering how something I’d never heard of could suddenly become my whole world.