Journey

Even though we are largely inseparable my life and Rory’s life are polar opposites.  Rory’s life is slow and empty whereas my days are spent at speed trying to achieve what feels like an endless list of tasks.  Rory cannot stand unaided, he sways and wobbles.  He cannot walk without a walker or two arm support from an adult.  He has little muscle tone and strength due to 10 months spent largely sitting in bed or on the couch.  He tires quickly both mentally and physically.  This means he can only do a small number of tasks for himself very slowly.  He  needs close supervision as he is at high risk of a fall.  I watch him closely all the time and pick up the tasks he currently cannot do.  This slows life considerably. 

We left Colt in Dannevirke with Grannie and Grandad Gardiner this week so we could all have a little breather.  On the way home Sean inhaled another cream horn from Viv’s Kitchen in Sanson after we walked in the lowland semi-swamp forest of Kitchener Reserve/Ahuriri Forest just outside of Fielding.  Both places are well worth a visit.  The Reserve has a boardwalk so we were able to push Rory in the wheelchair so he was surrounded by the green. 

Rory’s physical recovery has been my focus this week.  There is an unspoken expectation that Rory’s recovery will be instant, that now treatment has been completed everything will revert back to ‘normal’.  This is not the case.  Rory’s recovery will take at least as long as the 10 months of treatment if not longer.  I feel the pressure to wave a magic wand and fix everything like the last 10 months never existed.  Rory had a session with Carla the Physio at the Hospital.  She has given us additional exercises to complete at home.  We are not very good at physiotherapy at home.  Other tasks always seem to take priority, and because Rory needs one on one support it takes another adult to commit the time.  I remember it was like this after Rory completed cancer treatment ten years ago.  His physical recovery came about because we took him out doing things i.e. riding a trike, short walks, swimming.  Yesterday we met with Dane from Next Level Fitness gym in Inglewood.  He is going to design an individualised programme for Rory.  We have made a commitment to attend three times per week.  I am hoping over time this will help Rory’s recovery and make up for our slack effort at home.  I spoke to Hillary at Sport Taranaki, she organises Strength and Balance classes across the region.  These are largely for the oldies (65+) to prevent falls and injury but Rory has the same physical issues so we are going to try one of the classes.  We will be the only ones there without grey hair!  Rory had a session with Julia the Speech and Language Therapist at the Hospital.  We discussed ways to deal with his dry mouth and difficulty swallowing.  He is at high risk of choking so all his food needs to be cut into 1.5cm cubes and he needs to take small bites.  Rory is like most teenage boys, eats like a shag, so will have to make a conscious effort to change.  His speech is slurred so he also has to learn to speak louder, slower and more clearly so people can understand him.

The highlight of Rory’s week was a morning with Companion Jonny.  They hung out together in New Plymouth doing bloke stuff, sifting around town and playing pool and air hockey.  I am working to achieve regular companion time in future.  Rory deserves to be a ‘normal’ 18 year old at least part of his life.