by Natalie Roberts-Mazzeo
To my daughter Grace, you have embraced your sister in extraordinary ways. Thank you for bringing so much creativity, fun and joy to this new special needs life. I know it must have been hard to watch your parents try to navigate the early days your sister’s sudden serious diagnosis. You see, we were both hurting and grieving and sometimes it’s easier to stay angry, than it is to feel the raw pain and reality of Chiara’s condition and what that meant for her life and our family as a whole. You have come along to hundreds of hospital appointments and been by your sister’s side through casts for her clubfoot, EEG’s tests for seizures, AFO fittings, neurology, meetings, genetic appointments, speech pathology sessions and many post operation care visits. Sacred sistahood in action.
You have tested out all the equipment during trials for standing frames, wheelchairs, shower seats, specialised car-seats and feeding chairs with a huge smile of adventure, while I have tried to hide a mothers grief in trying to protect you all. Most of our family time has been spent in hospitals, waiting rooms, long and stressful car rides, travel both locally and overseas for intensive treatments. Yes, it’s been testing and sometimes harrowing but your level of connection, compassion and awareness to our situation always blows my mind. You have learnt such creative ways to play as a lot of our time has been taken up by Chiara’s additional needs – for which there are many. I wish I could give you more time; my heart sinks a little when I see all the games and toys you have been playing with quietly by yourself as I’ve attended to Chiara. You have included your sister into your world, proudly holding her hand as we walk you into school. I admire the way you effortlessly respond to your friends when they ask why your sister can’t talk, or sit or walk.
Grace, you have been blessed at a very young age (although I know you are a wise soul) to know the value of diversity and resilience. I know these two core aspects will put you in good stead through your lifetime.
The world may not always be so kind or accepting of Chiara’s conditions and you will (at some stage) come up against some conflict around disability. People might make jokes or comments that make you feel uncomfortable or uneasy about cerebral palsy or the like. Being different in our world isn’t always easy but it’s what makes us beautiful individuals of the light. It’s where all the treasures and blessings are hidden, so always stay true to you. Stay fiercely strong and proud of the woman you are growing up to be.
Grace, I know in my heart you will know how to respond and manage. All I can say is how proud I am for the love, care and pure acceptance of your sister and this new life we have. And when life gets tough – as it will as we all journey through the ups and downs, please remember you have a rare and precious gift. You have everything you ever need deep within your heart. Women who have walked before you, your aunts, your grandmothers, your great grandmothers and all the Goddesses that have risen like a phoenix out of the ashes, despite incredible challenges.
If your sister Chiara could talk, I am sure she would tell you time and time again how much she loves you. But I’m sure you already know that right, you both seem to share a secret language together. Keep shining your light fiercely dear one, it’s only going to get brighter and brighter as the years flow by. And remember, no matter what life throws at you – there will always be love, beauty and fierce grace all around you and deeply within you, always.
Connect with Natalie through her Instagram @natalierobertsmazzeo