Posted 3 years ago Less than a minute to read
Today you are you, that is truer than true
Today you are you, that is truer than true. There is no one alive who is youer than you (Dr Seus).
On Saturday we celebrated Rory’s 19th birthday. Rory’s birthdays always feel particularly significant. They symbolise the length of his life, which has hung by a thread twice following diagnosis with cancer. His birthdays mark how far he has come. We celebrate how much he has grown in the past year. Being a grown up is something Rory very much wants to be. A birthday is also a day to feel special and see how much those around you love you. It was an odd birthday for Rory this year. The night before we gathered for a family potluck dinner to celebrate the three bloke birthdays which occur in quick succession; Poppa Honnor, Rory and Uncle Guy. On Rory’s birthday we attended the funeral of our colleague Simon. There was a deep sadness in the room but also a huge amount of love and respect (peppered with a few funny stories). Simon was larger than life and he will be missed by many. In the afternoon we attended the Taranaki Relay for Life at the TET Stadium in Inglewood. We walked some laps with staff from Inglewood High and our friends from BNZ. The MC sang Happy Birthday to Rory. In the evening we went our for dinner with Sam and Caitlyn. Last year Rory had a lockdown birthday so we didn’t get the chance to go out and celebrate with him.
Unless you have a child with disabilities you cannot understand how much work it requires each week to manage them. This week we heard we were successful with our ORS application for very high learning needs for Rory. ORS provides support for students with the highest ongoing levels of need for specialist support at school. Following treatment for cancer a second time Rory has an increase in the number and complexity of disabilities. This increased funding will translate to an increase in Teacher Aide hours which will enable him to do more. We are hopeful this funding will follow Rory out of school so he can continue to have one-on-one support during the day as he participates in the adult world. Thank you to SENCO David for all his hard work. I met Claire, the Resource Teacher of the Deaf, from Ko Taku Reo. Claire spends time with Rory in the Learning Centre most weeks. She is there to ensure the class room and equipment is set up so Rory can hear and understand, and help him stay connected with the deaf student community i.e teaching sign language. I took Rory to Nurse Cheryl for the next round of immunisations (MMR). He will also need the Flu vaccine when the next dose of immunisations is given. I have spent significant time trying to organise an MRI for Rory’s left ankle. He has ongoing issues (weakness, repeated injury) due to a fall in September 2020. Even though it is covered by ACC all imaging his complicated by his cochlear implants so he cannot have the scan in a private facility. We have waited six months in the public system for an appointment.
Exercise and time in the outdoors continue to be an important cornerstones in our lives. I’ve started working out at the gym when Rory attends, and he is riding further and for longer at Riding for the Disabled. He had wobbly legs when he got off horse Peggy this week. On Sunday afternoon we went to the first working bee for PG Nops Reserve in Inglewood. We spent a couple of hours weeding around the native plants, freeing them from the pest plants which are strangling the life from them. We set up a photo point so we will have a visual record of our progress. Colt enjoys discovering the native animals which make their home in the reserve; kereru, katydid, weta and eels.