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
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 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.
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.
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?
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.