Before you judge a man walk a mile in his shoes
I spend more time with Rory than anyone. I am his primary caregiver, I am his manager and I am his mother. Yet I do not walk in his shoes. I have little understanding of what it is like to live with the disabilities he has and the challenges he faces every day. The words difficult, hard and tiring do not begin to describe the enormity of what it must be like. He doesn’t get to opt out. I often wonder if I would behave as well as Rory if my life was like his. He rarely complains or gets frustrated or angry. I think I would. We treat Rory as a modified version of ‘normal’ and have high expectations. The other day he angrily reminded me about his limits “You don’t know what it’s like trying to get your body to do this”. Activities are sometimes in the too hard basket. This morning Colt and I went for a morning walk around Inglewood and Rory was on the hand cycle. On the return trip home Rory was struggling to pedal. He was grunting and grimacing, complaining of tired arms and stopping to catch his breath. He said it was too hard. I couldn’t work out what was wrong because he had flown along the pavement on the cycle a week earlier. A quick chat to Sean on the phone revealed the problem. I left the brake on after a toilet pit stop. When Rory, Colt and I realised this we burst out laughing. When I took the brake off Rory was away again. I was without challenge for the ‘dick of the day’ award today.
Rory had his annual appointment with Audiologist Aretha from the Southern Cochlear Implant Programme. Aretha checked the hardware and tested and made modifications to his computer programme so he can hear better. With the help of Dr Stephen we submitted an application to ACC to review their decision about the calcification of Rory’s brain, caused by radiotherapy, which is causing the Cerebellar Ataxia. Our original ACC application was declined. At the crux of the decision is the degree and extent of calcification of Rory’s brain which is well outside the normal range of outcomes.
This week I attended a Child Cancer Foundation Parent Connect group meeting. We planned the activities for the Taranaki branch for 2020/2021. The most popular activities are our Christmas party, Mothers Only event, Parents only dinner and the Pool Party. We had an overnight visit from Grannie and Grandad Gardiner. It is always lovely to see them. Congratulations to Colt for getting Player of the day at Under 11 football on Saturday.