Journey

“Beautiful hours move so quickly”  Irene Hunt

Thirty years ago, as teenagers, the ‘girls’ and I were passionate about basketball.  We played it, coached it and were devoted fans of the Taranaki BP Bears.  We would queue for hours outside the YMCA to buy tickets to every home game.  The YMCA would fill with capacity crowds and the atmosphere was electric.  We all had a crush on our favourite player.  I haven’t been to a basketball game in years.  On Saturday night I found myself at the corporate box of Smokeylemon (Mandy’s company) with the ‘girls’ (minus Jo and Cindy) to watch the Taranaki Steelformers Mountainairs play the Southland Sharks.  The players were wearing the BP Bear uniform in tribute to Coach McKean who passed away recently.  The game brought back a lot of memories and made me wonder how the years had passed.  We are still the same people merely a few years wiser and more experienced.  I am lucky to have the ‘girls’ in my life and for the way I have spent the time. 

I am working hard to figure out the transition process from school into the adult world for Rory.  It is a minefield because there are several organisations involved with separate systems of support, each with criteria.  Once I have untangled the threads I will do my best to create a good life for Rory Monday-Friday during work hours as a school leaver.  I need to develop a framework with the ability to give him a variety of activities on a regular schedule.  This will provide Rory with a sense of purpose, make him happy and provide certainty and security to support his independence.  This week I have met with Wendy from the Ministry of Education, Marina from AccessAbility and Alison from CCS Disability Action. 

Unfortunately Natasha was away this week for personal reasons and I was unable to stay home for Rory due to work commitments.  Sean had to work from home for half a day and take annual leave for the other half.  My gradual return to work at Taranaki Regional Council comes with strings attached.  It means I have made a commitment to them and I have deadlines to meet.  I can deliver when things with Rory are stable but when there is change it becomes difficult.  There is no one available to support Rory at short notice but Sean and I.  We have to make last minute inconvenient plans for work and use up our sick leave and annual leave.  Rory’s need for one-on-one support places high demands on our lives.  We are fortunate we have an understanding employer.  Instability at short notice means we often have to cancel activities we have organised (and paid) for Rory.

Rory is continuing to be re-immunised according to the Starship schedule.  This week he received the flu immunisation and Meningitis.  He could not have the MMR injection because his lymphocytes at last count were <1.0.  I have to take him for a blood test in a couple of weeks. 

On Thursday Rob took Rory to Kingsway Menswear to try on suits for the Inglewood High School Ball in July.  I was kept up to date on the decision making with photos on Messenger.  Rory decided on navy and he is going to look very smart. 

Rory visited the Friday STAR course at WITT with SENCO David.  We were considering it as an option for him for Terms 2 and 3.  Feedback from the visit indicated neither of them considered it a good fit so we are back to the drawing board. 

After a very damp Saturday we braved turbulent weather yesterday morning to go for a walk.  Rory walked the greatest distance he has since before treatent, with support and regular rest/refuelling stops.  There were a lot of people out and about on the Te Henui and Coastal walkways.  In the afternoon Colt and I got our hands dirty, spending two hours weeding in PG Nops Reserve with our local environmental group.