Journey

I’m a big fan of the Outlander books and TV series (on Lightbox). Of course it has nothing to do with the lead character, handsome muscled red-headed Scot Jamie Fraser. In the books Jamie refers to the germs and viruses he sees down a microscope as “wee beasties”. Right now I see wee beasties everywhere, on eftpos machines, door handles, rails and counters. I can’t ‘see’ them but I know they are there. We already wash our hands a lot but now it is obsessive. To avoid exposure to the wee beasties we no longer let Rory out into the community where he is going to come into close contact with adults unless it is essential i.e. hospital visits. When we go out walking for our physical and mental health he wears a mask and I give people a wide berth. I have withdrawn Rory from school as two children from the learning centre have been unwell this week. I know coronavirus is not currently circulating in the Taranaki community (that we know of) but cases are increasing in number and distribution around Aotearoa. My greatest fear is that one of us will bring the wee beasties into our home and infect Rory. To lose him to a virus after two battles with cancer and 10 years of challenging disabilities would be devastating. The youngest person to die in Italy was a 21 year old Spanish football coach who also had leukaemia. Rory is one of the vulnerable. He is on active chemotherapy and has endocrine issues so his body can quickly go into crisis under stress. It is a very frightening and unsettling time for us. Rory says very little about coronavirus but I am definitely a lot more jittery.

Rory spent two hours at the Inglewood High School Learning Centre yesterday morning. It is likely to be his final visit for quite some time. I attended the Child Cancer Foundation Mothers Coffee Catch up. It was good to see Christina, Lenny’s mum. Lenny has completed chemotherapy for osteosarcoma and is currently awaiting a surgical date to rebuild his damaged leg. There are currently four teenage boys on the cancer journey in Taranaki. In the afternoon we received a visit from Alison and Amanda who are helping us work through an application for permanent ramping so we can access our house with the wheelchair. We currently have temporary ramping in place on loan from the Ministry of Health. I never realised how difficult it was to access our house with a wheelchair and what modification would be required to make it accessible. We only have three steps! We are also applying for a lift for the bath. Rory likes a soak (another Gardiner male who likes Lush bath bombs) and while we can get him in it is now quite difficult to get him out.