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.
The doctors handed us this word like a death sentence. They said it so casually, like they’d already decided what kind of life my baby would have. They spoke in cold tones, in that clinical way that makes you feel small. Words like “quality of life” “confined to a wheelchair” and“limitations” hung in the room like ghosts. It felt cruel. I didn’t even know how to process it, so I didn’t. I shut down and started searching for answers on my own.
I went online, typing that long, complicated word into Facebook with shaking hands. That’s how I found a group called Arthrogryposis Moms. I didn’t even realize it was an American group for a couple of days. I was desperate, desperate for hope, for connection, for anyone who could tell me this wasn’t the end.
When I finally posted in the group, I was about 24 weeks pregnant. I just wrote the truth..what the doctors had said, how scared I was, how lost I felt. And then the comments started coming in. Women from all over the world shared their stories. There were pregnant mums just like me, unsure of what the future would look like. There were mums with toddlers who were thriving. There was even a mum with a 35-year-old son living independently. He drove, worked, and lived his life fully. It was remarkable.
That group became my turning point. I felt this wave of love and understanding from people who had walked this path before me. There was so much hope in that space, so much proof that the doctors weren’t always right. It was right then and there I decided I wasn’t listening to their doom-and-gloom predictions anymore. Screw that. How dare they say she’d be “good for nothing.” How dare they underestimate her before she even took her first breath.
At our next scan, I walked in different. Stronger. I told them, “Rule out that option. Don’t speak of it again. Now, where to from here?” The room went cold. You could feel the tension. They looked at me like I was naïve, like I didn’t understand what I was getting myself into. They reminded me again that she would most likely be confined to a wheelchair for life. I said, “That’s fine. This is our call to make. So what’s next?”
They wanted us to do an amniocentesis, a test where they take a needle and draw a small amount of amniotic fluid to check for genetic causes. They said it would help determine what type of arthrogryposis she had, or if it was inherited. But there were risks—miscarriage, leaking fluid, infection, even injury. One in every 200 babies could be lost because of it. With such a delicate baby already, I couldn’t take that risk. So we said no.
We had no idea what the future would look like, but we knew she was special. We knew she was ours. That moment taught me what true advocacy means,it means standing firm even when you’re terrified. It means being your child’s voice before they can speak. It means trusting your gut when everything around you feels uncertain.
Over time, I learned something powerful: you are the parent, not them. You know your baby before anyone else does. Never, ever be afraid to ask for a second opinion. Never be afraid to ask hard questions or challenge the medical team. If something doesn’t sit right in your stomach, it usually isn’t right.
In those early months, I learned that it’s okay to speak up. It’s okay to push back. It’s okay to say, “No, I don’t agree.” These people doctors, nurses, specialists they’re trained professionals, yes, but they’re also human. They make mistakes. They have biases. Sometimes they see a diagnosis before they see the child.
You can change your doctor. You can change your midwife, your Plunket nurse, your pediatrician, your orthopaedic team anyone. This is your circle, your team, and it needs to feel right. These people become your family. You need to trust them with your baby’s life, your story, your mental load. If you don’t feel supported or respected, it’s okay to walk away and find someone who listens.
That lesson took me a while to learn. I used to feel guilty for questioning people with titles and qualifications. But now I know: those titles don’t give them the right to silence your intuition. Your gut is powerful. It’s primal. It’s the thing that will get you through the hardest nights and the longest hospital stays.
Another thing I never thought I’d say out loud maternal mental health helped me.
When someone first suggested I reach out to WellSouth Maternal Newborn Mental Health, I hesitated. The word “mental health” felt confronting. It felt like admitting I was failing. But it wasn’t that at all. It was about having someone in my corner someone professional, who understood the weight of this journey. I am so blessed to have Emily my Maternal Mental Health Worker she has been my absolute rock through so much she is so calming and understanding she’s very supportive and caring to be honest not sure I could of handled certain things appropriately if I didn’t have her in my corner she is an amazing advocate for us.
Navigating an unknown diagnosis, constant appointments, surgeries, and the emotional rollercoaster that comes with it,it’s too much to carry alone. Talking to someone who got it, who didn’t flinch when I said, “I’m scared,” or “I’m angry,” or “I feel guilty,” made a world of difference.
Support links we’ve felt helped us:
No Surgery 4 Clubfoot – Kori Rush’s website
This journey is filled with beautiful moments, but it’s also filled with grief. You grieve the pregnancy you thought you’d have, the birth you imagined, the milestones you pictured. That’s okay. It doesn’t mean you love your child any less it means you’re human.
Over time, we found our rhythm. We built a circle of people who understood us, People we trusted,, Physiotherapists who celebrated the tiniest movements. Orthopedic surgeon who listened to what we felt our girl needed and worked with us not against us to every call we felt was needed . Nurses who spoke gently. Specialists who listened first and lectured later.
With the right team, things shift. You stop surviving and start thriving. You stop questioning every decision and start trusting your instincts again and previous professionals who had let us down in the past.
And the truth is children with arthrogryposis are some of the most resilient, determined little souls you’ll ever meet. They are strong, smart, and creative. They always find their own way. It might not look like everyone else’s way, but they get there. Sometimes it’s through sheer willpower. Sometimes it’s through patience. But they get there, every time.
These kids teach us more than we could ever teach them. They redefine strength. They show us what perseverance really looks like. And they remind us that “different” isn’t less it’s just another version of beautiful.
If there’s one thing I could tell any parent hearing those words for the first time arthrogryposis, disability, limitation it’s this.. breathe.. Don’t rush to fill the silence with fear. Don’t believe every prediction you hear. Doctors deal in statistics, not spirit. They can’t measure heart. They can’t predict the kind of fire that burns inside these kids.
You’ll meet people who don’t understand. You’ll meet others who think they know better. But you’ll also meet warriors families, therapists, teachers, doctors even lawyers with heart who will walk this journey beside you. Let them in. Let them help. But always remember, this is your journey. You are the parent. You know your child better than anyone ever will.
Advocacy isn’t just about fighting. It’s about grace, too. It’s about learning when to speak and when to step back. It’s about finding peace in the chaos and celebrating every single milestone, no matter how small. It’s about not letting anyone take away your hope.
Because hope is powerful. It keeps you going through surgeries, sleepless nights, setbacks, and endless appointments. Hope is what lets you look at your child and see everything they can do, instead of what they can’t.
And grace it’s what keeps you grounded. Grace for yourself when you’re tired, for your child when things are hard, and yes, even for the professionals who sometimes get it wrong.
At the end of the day, this journey isn’t just about raising a child with arthrogryposis. It’s about community. It’s about learning to advocate fiercely, love deeply, and move forward with grace, even when the path is messy.
So, to every parent sitting in that cold room hearing impossible words, to every mum who can’t sleep because the fear won’t switch off, to every dad trying to stay strong while breaking inside know this: you’re not alone. There’s a whole world of us out here. And one day, you’ll look back and realize that the thing you feared most became the thing that made you strongest.
That’s the strange, beautiful gift of this journey. It breaks you open but it also fills you with something unshakeable. Love. Courage. Grace.
And that’s where the story really begins.