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
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.
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.
The Casts, the Hospitals, and the Little Wins
After the birth, everything blurred. One minute we were still taking in the tiny perfection of her toes, the next we were being handed a schedule that felt like it belonged to someone else’s life. Hospitals became our second home before we’d even settled into our first.
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.
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.
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, it wasn’t just a medical term. It was a label that came with fear, confusion, and a thousand unknowns. What I learned quickly is that understanding it doesn’t make it any less overwhelming, but it does give you something solid to hold onto something to guide you through the uncertainty.