Journey

As a result of cancer and its treatment Rory will always be stuck between childhood and adulthood, largely dependent on Sean and I with limited ability to establish an autonomous life.  Rory’s behaviour swings from very needy to independent.  His cognitive ability stretches from limited understanding to a depth of awareness beyond his 20 years.  This creates challenges for all of us.  The one we struggle with the most is limited freedom.  Our Support Carers provide an invaluable service, assisting Rory to be independent in the community, giving us all a break from each other.  The result is we are healthier and happier, able to maintain equilibrium at home.  While we have all enjoyed the Christmas/New Year break we are looking forward to resuming ‘normal’ life. 

In the last week Rory spent a day with Jo so Sean, Colt and his friend Jai and I escaped for a tramp to Parininihi Whitecliffs.  The track was very overgrown so we had to battle our way in the heat through gorse, thistles and paspalum with red legs and runny noses.  We were glad to hit the final stretch along the beach to escape the entanglement and rinse our legs in the salt water.  Rory had one day with Deanne.  He was virtually running out of the house in the morning.  He had his first session at the gym for 2023.  The rest of us will return tomorrow.  As a family we went on a mini-road trip up the Forgotten world highway to Taumarunui, staying at NZ Carbon Farms Lodge at Ongarue.  It is always a release to be isolated in the hill country.  The lodge is tucked under a native forest remnant and there were young pine trees as far as the eye could see.  The following morning we went on to Te Kuiti, returning home via the coast.  I was impressed by Te Ara Tika the pedestrian railway over bridge at Te Kuiti with its spiral ramps at both ends.  It is great for people with mobility challenges.  The Piopio berry orchard was busy when we stopped for ice cream and at the Mokau museum we admired the photos of farmers driving the last herd of sheep through the Parininihi stock tunnel which we had walked through only a couple of days earlier.  Today we walked the Coastal walkway in New Plymouth with Rory on his hand cycle.  The boys loved the iced chocolate, mocha and coffee stop at the Fitzroy Beach kiosk.