Journey

The definition of independent is someone or something that is free from the influence or control of another.  An example of independent is someone who lives on their own and supports themself.

Leanne, the Occupational Therapist from ACC, said the purpose of rehabilitation is to allow Rory to become independent.  Independence is not a word I associate with Rory and I have been asking myself why.  Medulloblastoma, Osteosarcoma and two intense treatment regimes have left Rory with multiple significant impairments.  To enable him to have a rich and full life I have been more than his mother, I have been his manager and fighter.  In doing so have I also robbed Rory of some of his independence?  There are some things he is unable to do.  There are some things we stop him from doing as there is a safety risk, some because it takes so incredibly long in a world which operates at speed.  Some because he makes a mess which requires us to clean up afterwards and we would rather just do it.  Equally, no matter how many times we instruct Rory he calls mum or dad like a small child rather than do it himself.  When Leanne brought up independence I thought this was a goal out of step with reality because she doesn’t know Rory.  However, as the thought has been ruminating in my mind, I wonder if there are small adjustments we can make so Rory can say ‘go away mum and dad I’ve got this’. 

Rory has been busy this week with his usual programme.  In the middle of the week Janet, a Massey University Neuropsychology Professor, visited us at home to start an assessment with Rory.  I worked quietly at the kitchen table.  There were some things Rory could do but a lot of what she was asking him was beyond his functional level.  We have also noticed his ability to control his legs, particularly from the knee down, is declining and the wobbles are becoming more extreme.