Journey

Rory’s diagnosis with cancer, and subsequent impairments, markedly changed the kind of life Sean and I could live together.  One of the hardest things for people to understand is the lack of freedom.  For 21 years we have been responsible for Rory 24/7.  We cannot spontaneously do anything as individuals, or as a couple, as we need to ensure Rory has support.  Simple things like going out for a walk, dinner or a movie, or going away for a night (let alone a couple’s holiday) require a military level of planning.  They also rely on the good will of others (paid or unpaid).  We love Rory and we will do the best we can for him while he is with us but his continued need for care is an unspoken constraint.  Yesterday, thanks to Support Carer Jo, and because Colt was at a sleepover, Sean and I were able to slip away for a short tramp on Taranaki maunga.  We were trying to remember the last time it had been just the two of us.  As I am still recovering from Covid the pace was slower and I was short of breath on the ascent.  Sean said it was a more relaxed walk about than usual!

Rory’s happy place during the week continues to be NP Men’s Shed.  He is helping make transportation boxes for Western Brown Kiwi for release into new protected areas in Taranaki this winter.  Sometimes the connectedness between people and projects in our region surprises me.  He and Peter are making a special box for the hunting knife Grandad Gardiner gave him.

We are still working our way through the process of determining what support is available for Rory via ACC.  As well as trialling a range of powered mobility devices with OT Coralie to decide what is suitable to keep Rory active in the community we need to consider long-term transportation.  This week we met with ACC Transport Assessor Kevin.  He introduced us to the world of mobility transportation.  Once Rory is using a powered mobility device we need to consider what vehicle we use to transport him.  There are so many factors to think about; size/space, ramp or hoist, transfer, rails, chairs which swivel and raise/lower, securing the mobility device and ease of driving.  While hopefully ACC can assist there are also financial considerations for us and Rory.  It is likely to take 1-2 years to solve mobility and transport and we have no idea if, or how quickly, Rory will decline.  ACC Physio Josh visited.  We discussed including brain breaks in Rory’s day; cochlear implants off with an eye mask on, so it is dark and quiet for 10 minutes.  Everything Rory does drains him mentally, even the little things we take for granted like eating, walking and paying for items.  Josh said to physically function safely Rory’s brain needs breaks. 

Sean, Rory and I had enjoyed some special time together on Saturday.  We drove north for the Mokau Bone Carving symposium.  Every year we are blown away by their work.  On the way back we stopped for a slow walk on the beach at Mohakatino.  Sean and I supported Rory.  It was good for us all to be by the sea, in the salt air, immersed in the sound of the waves.  We all enjoy beach combing.  There were many animal footprints, including goats, and I saw two rats.  It was a bit disheartening for the survival of native fauna in the area. 

Happy 24^th birthday Caitlyn.  You are a special addition to our family.