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.
UNDERSTANDING ARTHROGYPOSIS
The name Arthrogryposis comes from Greek arthro meaning joints, and gryposis meaning curved. It’s a word that sounds complicated, almost scary, but at its core, it simply describes stiff or curved joints. For us, it’s the word that first knocked the wind out of me, the word that entered our lives and changed everything.
When Hannah-Rose was diagnosed
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?
What we gained when plans changed.
Somewhere between those endless Tuesdays and the smell of fibreglass, a quiet doubt started creeping in. We’d sit there watching her tiny legs wrapped again and again, and sometimes we’d look at each other and think, this isn’t what it’s supposed to look like. It wasn’t ungratefulness it was instinct. Something in us knew there had to be more.
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.