Journey

Yogis say the in- and out-going breaths are the two guards of the City of Life. When the guards are well coordinated, the city’s defences are strong. When the guards are disorganized and disconnected, the city comes under attack.  The manner in which we breathe influences our entire being: our mental-emotional states, the nervous system, hormonal balance, muscular tension and all the functions of body and mind. Bad habits cause strain and stress; good habits keep us strong and healthy and create a sense of well-being.  Living life with Rory feels like a series of breath holding spells.  I have to constantly remind myself to breath and to escape periodically so I can breathe freely without constraint. 

Rory had a serious fall in the bathroom on Tuesday.  He was walking in socks and wasn’t holding the rails.  He has bruising down his right thigh and around his right foot/ankle.  He is very lucky he didn’t hit his head.  Sean took him for an x-ray.  He is sore and in an ankle brace.  The injury has meant he has limited mobility out of the house.  Prior to the accident we noticed Rory has started to struggle mobilising with the walker.  It takes concentration and effort to propel and control it, particularly over uneven and rough ground.  Rory is mobilising incredibly slowly.  We think we are observing the beginning of a decline in the use of the walker outside of the house.  It is only a matter of time before Rory needs a powered wheelchair to get about in the community.  As the cerebellar ataxia is progressive and degenerative falls are going to become a more common occurrence.  Rory has little concept of safety or how much work Sean and I put into his management and how accidents cause our life to implode.  He thinks he can do it his way ‘I’m not useless’ is a phrase we hear often as he demonstrates unsafe behaviour. 

It has been a week of small fires.  In addition to Rory’s fall Sam had a gastro bug and Nana and Poppa Honnor have Covid19.  Colt’s school moved to online learning as too many teachers and students are away sick.  This makes it a challenge to work and a challenge to stay sane.  We spend a lot of energy keeping Colt off a screen and separating him from Rory to combat constant niggling.  Rory’s blood test on Monday showed abnormal kidney function results so he returns to our GP this week.  Thankfully his weight is stable but he weighs 15kg less than when he was in treatment. 

Yesterday Sean and I took a break.  Rory hung out with Support Carer Jo, cooking and going out for lunch and a movie (Jurassic World Dominion).  Sean, Colt and I escaped to the south Taranaki coast.  The weather was marginal but low tide in the middle of the day is ideal for coastal exploration.  There were huge slips between Ohawe and Waihi beach, water falls cascaded off high cliffs, fossil were exposed and the beach was strewn rocks and wood all manner of shapes, colour and texture.  Sean found a juvenile Arrow squid on the beach.  It was a much welcome opportunity to stretch and breathe.