We are part of the Very Special Kids (VSK) community. VSK cares for children with life-threatening conditions by providing a children’s hospice as well as other amazing family support services.
Recently we attended a movie event hosted my VSK, but first let me tell you how we first connected with VSK.
From the moment our doctor delivered Chiara’s diagnosis I knew how serious things were. Contrary to a lot of other parent’s experiences, I was actually thankful that our doctor was clear, blunt and straight to the point. I wanted all the facts and zero fluff.
After five roller coaster months of hospital appointments and clubfoot treatment at The Royal Children’s Hospital, I knew there was something else more serious going on with Chiara. A mother’s intuition is one of the most powerful and sacred tools we have.
Yet, the world just wanted to make me feel better, by telling me time and time again “Natalie, nothing is wrong with Chiara, she is fine. Get some rest and stop worrying”. Yet I couldn’t shake it and to cut a very long story short, I was blessed with a Peadiatrician who really listened. A brain MRI at 5 months of age confirmed that Chiara had suffered a stroke and as a result, was left with a very serious brain injury.
Bilateral Perisylvian Polymicrogyria + Microcephaly + Quadraplegia Cerebral Palsy + Global Developmental Delay, all became words that consumed my world. All of a sudden Chiara’s initial diagnosis of a ‘common and treatable clubfoot’ extended far beyond what any of us were prepared for, even the medical team. Shocked to say the least.
When I researched all the new labels and conditions associated with her brain injury “Life-threatening” seemed to stand out in neon flashing lights. I’ve been blogging for years and have shared my words over global platforms, yet it’s almost impossible to explain the fear and worry that any parent experiences when coming to terms with the reality that their child, has a life-threatening condition.
Which brings me to Very Special Kids, we are part of VSK because our daughter Chiara also has a life-threatening condition. It’s comforting to know that if something was to occur suddenly, that we would have the support we need. Whilst I had a lump in my throat on their tour of the hospice, I also felt extremely grateful that such a service exists.
However, the amazing thing, is that VSK is not just about specialist care at the hospice, they extend far beyond that. Their services cover counselling, advocacy, sibling support, networking and peer activities and trained family volunteers. Our eldest daughter Grace has attended their fun sibling day, which is so special.
More recently VSK hosted a movie event at The Rivoli Cinemas in Camberwell.
Talk about a room full of acceptance.
It was one of our most beautiful and amazing family movie outings!
Because in that room there were families just like ours, raising children with additional needs. There were wheelchairs, lots of playing and letting kids be free. It never felt like we had to try and quieten Chiara down, if she became too loud. Instead, there we all were, a room full of families all experiencing very similar paths in life and sharing a morning at the movies.
As I glanced around the room, I saw children who deal with extraordinary health issues every hour of every day, I saw their families and carers and I saw a room full of incredible and courageous acceptance.
What a gift!