This article submitted by parent and Cameron’s Smile founder is all about her new recently published book ‘Cameron’s Smile- raising a deafblind child’.
I have known Carla, the book author for a number of years through social media and have observed a warrior Mummy who is always caught deep in battle to get her child everything he deserves, but also at the same time being highly considered of Cameron’s siblings.
Like my own daughter Scarlett, Cameron is a very complex child, who requires a significant amount of support, but seems to be part of a system that continually fails him. Carla never seems to tire of fighting for what is right and uses her voice not only to highlight the difficulties of raising a complex child, but also gives him an absolutely wonderful life, that is rich with experiences and opportunities. Carla has most recently helped me secure a much better care package for my own daughter, using her knowledge of the system to guide and assist other parents.
Please read more to find out all about the book, the motivation for writing it and also where you can purchase the book- the proceeds are all going towards helping to improve the quality of Cameron’s life.
“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.”
This is my story. A true life reflection of what it is like raising a deafblind child in a world that is far from equipped for disabled people.
My son was born with a rare genetic condition called Norrie Disease which led him to be born completely blind and later develop hearing loss alongside complex needs. I was thrust into a whole new world of despair and I had never felt so isolated and alone. I needed to get my story heard, connect with others – raise awareness and acceptance for a better world for my children.
That is when it came to me in the middle of the night. 8 years on in this journey, I decided to publish a book covering topics that many choose to silence, including what life is like for Cameron’s siblings.
“It wasn’t all sunshine and rainbows, though. Life was hard, but it was going to be even tougher for her – as a sibling to a disabled child. I missed her terribly with every hospital admission. I could see that she worried immensely for her baby brother, and she carried a weight on her shoulders no child her age should bare. Adam and I tried to take the strain, but she was always going to worry about someone she loved so dearly. She never stopped making me proud.”
I wanted to voice what life is like for us parents as carers and the impact it has on our mental health. It covers our journey from trauma to love for a very special child and I want others to be able to connect with those feelings.
“The thief of joy, yet I couldn’t help myself. Wherever I go, whatever I do, I can’t stop myself comparing our child to what would have been. Nobody plans for a disabled child. Nobody wishes challenges and struggles on their loved ones. Yet here we were, faced with the unimaginable. These feelings should be spoken about and normalised. We are not bad people for having these feelings, it’s human nature. Just don’t unpack and live there.”
As well as sharing the real life struggles disabled people and their loved ones face, its also important to raise awareness that disability is certainly not the end of the world. I would really hope my book gains an insight into how beautiful life can really be, and that with the right support and accommodations put in place, a disabled person can still live a wonderfully happy life achieving their best potential.
“Live life with no limits. This is the motto he has firmly instilled in us. I repeated this over and over in my head as I signed him up to the next adventure. Parasailing is something many would be too frightened to consider. My little boy couldn’t tell me if it was something he wanted to do so I had to make that judgement for him in the hope it was the right one. Was I making the right choice? He could cry and hate every moment, but I knew my baby better than anyone in this world and I had to trust my gut. He’s got this thrill-seeking, adrenaline junkie character about him and needs to take the leap. His limited mobility and need for extra support to access activities shouldn’t be a barrier to new experiences. As we fitted the life jacket around his tiny waist, he knew something exciting was about to happen. We stepped onto the boat as it gently rocked against the wind. We headed out to sea and he laughed more and more as the boat thrashed against the waves.”
“My little boy has never seen a smile, but knows exactly how to make one when he is happy”. ‘Cameron’s Smile –
Raising a deafblind child’ is available to purchase on Amazon now. https://www.amazon.co.uk/dp/B099TQ5D8C/ref=cm_sw_r_cp_apa_glt_fabc_7Z5HWJPGTHACSZEBZH8B