A sister’s reflection: “I am his voice and he is my heart.”

July 11, 2023

Written by very special sibling Chantelle.

Having a special needs sibling, is exactly as it says…special.

There’s no denying that it’s been hard, it’s been stressful and it’s been a battle over the years, but it is the most rewarding and precious path life could’ve given our family.

Bailey, my brother, is quadriplegic, non-verbal and fully wheelchair bound. He has faced battle after battle and come out on top every time. Many times we’ve sat by his side and said our goodbyes, yet every time he defies the odds. We were told he wouldn’t make it past two years old…. and he turned 18 on the 18 of March 2023. We celebrated the milestone he was never meant to make as a family.

He celebrated with his nearest and dearest and smiled all day. The strength and resilience he has shown never ceases to amaze me. He is the strongest and most beautiful soul.

Throughout Bailey’s childhood, Very Special Kids has been an enormous part of our lives and we have shared many smiles, many tears and many dark times with them.

They are one of the most dedicated and compassionate foundations we have ever been involved with and we always knew Bailey was safe and well in their care.

Special mention to our family support practitioner, Anna Phipps who was with us every step of the way. Anna. I wouldn’t be who I am today without your guidance and care over the years.

Having a special needs sibling teaches you many things in life, but most importantly for me it’s truly taught me the meaning of love. I love that boy with every part of me, he is my whole world. I didn’t think it was possible to love something as much as I love him. He takes pleasure in the simple things in life, holding hands, kisses, cuddles and just listening to you. His eyes are his words and emotions. I look into his eyes and see nothing but love.

I’ve been Bailey’s advocate for the most part of his life. Being his voice, being his defender and being his number one supporter. I came across a quote one day that I knew was the perfect way to describe mine and Bailey’s relationship: “I am his voice and he is my heart.”

It’s now tattooed on my forearm so every time I hold his hand he can see it and know sissy will always be his voice.

I’ve often been asked if I had three wishes, would I change Bailey… the answer is no, he is the biggest blessing and gift life could’ve ever given me. I wouldn’t change him for the world.