Journey

Covid19 has made what is a challenging time in our lives that much more complicated, difficult and life threatening.  We are estranged from members of our family and friends who are an essential part of our support network.  We must keep a 2m+ distance from every other human being we encounter and public trips to places like the supermarket feel very high risk.  Every sniffle and sore throat make us paranoid and we worry we may have Covid19 and need to get tested.  Colt can no longer go to school and I feel overwhelmed with the avalanche of emails pouring in re online learning.  I had a zoom meeting today with his teacher to try and sort it out.  It is a lot harder to manage Rory’s treatment; there are multiple layers of security to get into the hospitals, Colt is locked out and only one parent can attend at a time, Rory’s medication sometimes take days to arrive, RM House is closed so we have to stay off-site and every medical professional we encounter comes with the risk of exposure.  I feel stressed and wonder when something (or someone) will crack from the pressure. 

There is no shortage of things to do to fill our days while we are home. Sean is trying to be productive and work for TRC.  Rory is resting and picking up new small activities each day; sorting our mountain of lego, attending home room calls with Te Awhinatia, folding the washing and managing more of his personal needs.  I am providing support to Rory and managing the medical side of things.  I am working through the paperwork to become a (paid) Carer for Rory.  I have spent hours on the application.  Nothing disability related is ever quick or simple.  We continue to walk each day.  One thing we do miss about Auckland is the opportunity to walk and explore new green space within a radius of the hospital.  There is always something new to discover.  There are a limited number of options in Inglewood, even though we have the Hippocampe.