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 Casts She Was Never Supposed to Kick Off
It’s hard to explain what it feels like when your child does something the specialists once told you would never happen.
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.
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?