I dreamt of a healthy baby boy. I mean that is what everybody wishes for, right? As long as they are healthy, that is all that matters. But what happens when those dreams are snatched away? I was stricken with grief for a child I held in my arms and there was nobody I could talk to about those feelings – nobody who could even begin to comprehend what we were going through.
My son Cameron was born with a rare genetic condition called Norrie Disease, which causes males to be born blind and later develop hearing loss. Suddenly, I had a disabled child and was navigating my way through the life of the caring role. He was going to be deafblind and I somehow had to wrap my head around the fact my beautiful little boy would never get to see my face.
Right from the very early days, I found comfort in expressing my feelings through writing. I soon created a social media account to connect with others in similar situations and share our journey with the world. It was exactly the sort of therapy I needed.
Learning your child will be different from what you had initially planned can be a scary and isolating time. When I needed support the most, who was truly there? I reached out to others, to be the guiding hand that I myself so desperately needed right at the beginning.
I’m hoping that in sharing my book with the world, many other parent carers can relate to the raw and emotional trauma we have experienced, and if you’re not directly affected by disability, then I hope it can shed just a small glimpse of the different life we live – that is still so worthy of inclusion and acceptance.
Reliving those early days of diagnosis can be so painful, but I want to give others hope in believing that pain soon turns into something much more fierce, love. And the amount of love you have for your child will empower you to advocate for them with all of your might.
Comparison, jealousy, genetic testing – subjects that are not often openly spoke about. I want to open up those conversations and let the world know it’s OK to discuss that. Every emotion we go through on this journey is valid and we need to know we are not alone in a time we are actually so isolated from the world.
There is going to be tough days, but so many more good days too. I’m confident my son’s smile can help change the perspective of the world.
After all, my son has never seen a smile but knows exactly how to make one when he’s happy.
Carla’s book became a #1 Amazon bestseller overnight. Buy a copy here!