Welcome to The Notebook, a blog about Hannah Rose her journey and the awareness we’ve gained along the way. We never intended to create a website; we simply wanted answers. When we discovered Arthrogryposis, we had to figure everything out on our own. Now, everything we’ve learned is here for you, for us, and for anyone who needs it.
The Notebook
It’s honest, sometimes messy, and filled with love and hope. If our story can help even one family, it will be worth it. You’re welcome to walk this path with us you’re not alone, and every step matters. xx
Adjusting after surgery.
The Tenotomy
Surgery day hits different. You can prep yourself on paper, talk it through with every doctor under the sun, pretend you’re ready, but when the actual morning arrives your whole body calls you out.
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.
Tiny Wins, Big Steps
After months of hospital trips, casts, and scans, life slowly started to find its rhythm. It wasn’t sudden there were no dramatic breakthroughs just small, quiet victories that reminded us how resilient Hannah-Rose truly is. The first time she lifted her head during tummy time, I felt a rush of pride I can’t fully explain. Every week, each new movement, each small adjustment in her casts, became a reason to celebrate. Not perfection, not giant milestones just progress.
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 Gift of Grace
Leaving Te Anau was one of the hardest choices we made. We’d built a life there farm work, deer and sheep, the quiet mornings and wide-open sky. But once we knew Hannah-Rose’s condition and that we’d need an elective C-section, it wasn’t really a choice anymore. The hospital was nearly two hours away if something went wrong. We needed to be closer.
THEY SAID SHE WOULD NEVER MOVE HER LEGS..she missed the memo
It was one of those dark days that feels like it will never end. I thought I understood what the doctor was saying at first arthritis and I pictured my nana sitting in her chair, her bones sore, and I thought maybe my baby would feel the same. That was all. I didn’t understand the weight of the words coming next. Then the doctor came back in, papers in hand, calm as if she was asking about lunch, and said, “We can arrange a room now for an abortion and sterilization.” I froze. Pardon me?