What I want the world to know about my daughter and her diagnosis

By Natalie Roberts-Mazzeo, Writer, speaker and founder of Miracle Mama

There is so much I want the world to know and understand about my daughter, because in creating awareness around diversity we can help break down any stigma attached to being “different”.

I want the world to know that my daughter is just like any other child, who wants to feel loved, safe and supported. She has the same child-like spirit like any other child you meet, except the only difference, is that her health has been compromised.

“The true measure of any society can be found in how it treats its most vulnerable members” – Ghandi. 

It all starts at home with family: parents, siblings, grandparents, aunties, uncles, cousins, friends and then the community at large.

We all need to shift and adapt to some degree, when we have been touched by a family member who is vulnerable.   

I want the world to know that despite the fact that my daughter is non-verbal and has physical limitations, she is intelligent, resilient, cheeky and, an all-round incredible human being. She has a brilliant sense of humour and has a strong determination to learn and have fun.

Chiara is open and accepting to the world around her, even when she doesn’t get the same acceptance in return. She has had to adapt to a world, that doesn’t always accommodate her or understand her.

She wants to run around the park like any child her age, she wants to jump in puddles, climb tree’s and talk. So we have to think outside the box, get a little bit creative and try new things.

She is patient, kind and will always seek out the person with the serious face, and beam her smile at them until they smile at her back. Her smile and spirit lifts the world, I see it with her and so many others.

The world fails her and all children living with diversity when it doesn’t expand its consciousness for inclusivity. When people talk over her, as if she isn’t there, or when they exclude her ‘because it’s just too hard’, or further still, when they don’t know what to say.I get it, I understand it’s difficult, because the situation is different.  It brings up our own judgements and internal biases and we often get it so wrong. 

I’m the first to admit I was the same before Chiara graced our lives, I didn’t really know how to act, what to say.

Should I ask the parents about the diagnosis and what happened? Or will I offend? What is the best thing to say? Should I speak directly to their child, or is it better to communicate with them?

Please be reassured that in this life, when you see people living with diversity, just remember that underneath it all, they are just like you, beautifully human and all you have to do is respond from that place.

Human to human, heart to heart.

If you were living with a diagnosis, how would you want the world to be? How would you want people to treat you? How would you want to feel?

I still have a long way to go, to learn, to evolve and to embrace it all, but just as Maya Angelou says “when you know better, do better”.

Acceptance is key, as well as creating inclusive environments of opportunity for all. I’ve seen what happens when a community slows down and connects to the value of human life and what we are all here to contribute to.

I’ve seen the power and brilliance that children living with diversity bring to the world. I see people expand their capacity for compassion and connection.

I’ve seen what happens when we connect and respond and understand that we are all the same –  curious, complex and courageous human beings, trying to do our best in a big and wild world.