Can do
To know what people really think, pay regard to what they do rather than what they say ‘Rene Descartes’
It would be easy for Rory to spectate life; to think, dream and observe. All from the confines of our home, a vehicle or a care facility. But what makes our lives diverse, full and satisfying is what we do. So we challenge Rory, we challenge ourselves and we challenge our community so Rory can do.
Rory loves his two mornings a week wood working. On Monday he went to the NP Men’s Shed where he is working on a bench for a community reserve with Phil. On Thursday he went to Peter’s house to work on the dog kennel for Leo. It is going to be the fanciest dog kennel in Taranaki. He was proud to complete his project at WITT to organise an event (Archery) for the students. This week they visited Kibby Carillion on Pūkākā Marsland Hill. On Saturday Rory and I went to a golf croquet session with Parafed Taranaki and the Tasman Club. It was wonderful to have an abundance of helpers from the club to teach and support the players. I had to walk behind Rory on the pitch holding his waist to help him stand and mobilise. Leo is a continuous challenge. He loves being with foxie-cross Fern. He is chewing pegs, shoes and sticks which he finds in the section. He is starting to follow us around. Rory loves it when he cuddles with him. Leo is still yelping in the early morning and toilet training is a work in progress. Today we went to lunch with our extended whanau for (great) Auntie Janet’s 90th birthday. It was lovely to see everyone.
Rory had a second fall in the bathroom this week. This time he hit his head and bottom. Our bathroom has become a danger zone. Rory can no longer go in, even with rails, without Sean or I for support. It is terrifying when he falls. Rory still won’t listen to the instructions we give him for safety. He snuck out to the garage to get his boots when Sean was in the shower. He had been told to wait. Luckily he didn’t fall but an accident would have been horrific. Sean’s nerves are frayed. We don’t want to see him hurt and the aftermath affects us all.
Rory returned to GP Dr Morrison as his creatinine level is still high. There is no obvious cause. It is not serious at this point but he has been referred to a kidney specialist. I can’t help but feel we have been here before. Health issues always start as a small spark, which over time burns brighter and hotter. They become fires which cannot be distinguished, merely managed.
We have had a visit from the ACC Speech and Language Therapist Sheila. We learnt a few things we didn’t know. Rory chokes on hot drinks because they have less sensation than cold, leaning on his hand on the left side of his face is pushing his reconstructed jaw further out of place, the electric toothbrush frequency interferes with his cochlear implants and breathing exercises would be beneficial to open his diaphragm.
It feels a little like life is on wash, rinse and repeat. I get up at 4.30am, workout at the gym, get ready for work, work, come home for house chores & management of Rory, eat dinner, watch tv and sleep! Last Sunday two of us spent an afternoon removing pest plants from PG Nops Reserve. It is very satisfying seeing what we have achieved but it is a forever job. If we didn’t do it the forest remnant would be overcome by weeds. At some point in the future there would be no turning back. Sometimes it feels like not enough people care.
On Friday it was the national annual fundraiser for Ronald McDonald House (RMH) - Pyjama Day. We are one of the longest staying families at RMH. There are no words to express how grateful we are for our home away from home. The staff at Taranaki Regional Council got behind this fundraiser and raised almost $500, people were dressed in everything from Oodies and Onesies to robes. Inglewood Primary also showed their support and according to Colt everything is better in pyjamas.