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
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?
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.
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.
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.