Finding joy on the journey

Fanthams Peak Sean Rory Feb 2021

Its easy to become consumed when a serious medical diagnosis occurs within your family and you follow a different journey than ‘normal’ people.  It is a hard road.  Sometimes you forget that tragedy and heartache also happens for others around you.  You are not the only one.  Others are also taking small steps.  When you look around and see this you appreciate you are not on the hardest journey.  This week I caught up with a mother whose son is being treated for relapsed osteosarcoma.  Following his initial 12 months of treatment he only had a short period in remission at home.  They are again dragging themselves back and forth to Starship for chemotherapy in an effort to prolong his life.  Sean caught up with a father whose eldest child has a significant medical condition.  He lost his wife to cancer not long ago.  The child is struggling as they hit the teenage years due to their challenges and without mum as her anchor.  Last night I took part in the first zoom call for the Australasian Canteen Parent Advisory Group.  There are 10 parents in the group; bereaved, multiple children diagnosed with cancer, those raw and living from scan to scan as their children were newly off treatment, and those who had broken down and were still scarred even though years had passed.  Everyone forced to confront and live with a serious medical diagnosis has their own journey.  They should not be compared or downplayed.  They are unique and life changing.  They have a significant effect on how we live and the quality of our lives.  I regularly hear the comment ‘you guys are amazing, you are doing so well’.  As I heard several times this week when you have no alternative you get on with it.  You do what needs to be done.  I received a valuable reminder this week that we should also find joy whenever and where we can.  We only get one chance. 

Rory and Rob hung out together on Tuesday.  Rory is very fond of Rob.  However now Rory is attending school for longer during the day they are not going to spend as much time together as they did.  I have asked Rob to consider one day a fortnight in the weekend and he is keen to stay part of Rory’s life.  How Rory spends his days will be an evolving space as I transition him out of high school this year.  To start with Rory will spend most of his days in Te Awhinatia, the Learning Centre at Inglewood High.  We are hoping he will be able to learn and utilise his skills in Te Reo and Hard Material (Woodwork) with support.  We are still awaiting the outcome of an ORRS application submitted months ago for an increase in his Teacher Aide hours.  On Friday he stayed the whole day at school for the first time since September 2019, it was a milestone.  The students participated in tabloid sports in their Houses in the afternoon.  As Rory is a Year 13 he is considered a leader for his house (Maroon).  He is taking this responsibility seriously. 

Rory continues to work out at the gym four times per week.  His recovery is so gradual it is almost unnoticeable but he is definitely increasing in strength.  I try and get him out walking as much as possible to increase his stamina.  Last weekend we walked the beach from Mokau to Awakino.  It was a sunny day and there were lots of people fishing and driving up and down the beach.  After our tramp the day before I’m not sure who was helping who as Rory and I walked arm and arm back to the car.  Rory had an appointment with the Dentist at Taranaki Base Hospital.  Demineralisation of his back teeth is still occurring as he cannot clean them easily.  The skin around his mouth is very tight following reconstruction and his jaw does not open fully.  The dentist is going to seal the teeth to try and protect them from decay.  On Wednesday Rory went with Natashsa for his first session of work experience with Conductive Education in New Plymouth.  He spent a couple of hours preparing material for the teachers and learning how their classroom operates.  He said he enjoyed it and is keen to go back next week.  Nurse Cheryl has given Rory his next immunisation so he has a dead arm.  He is also due the first MMR (Measles, Mumps, Rubella) injection.  It is a live vaccine so we are in discussion with Starship about whether to give it now because he is hydrocortisone dependent which lowers his already weakened immune system. 

Colts start to the school year was delayed a week due to issues with new classrooms.  It was nice being able to hang out with him for a few extra days one on one after Rory returned to school.  Colt finally started on Tuesday as a Year 6. 

On Waitangi weekend Rory spent a day hanging out with Sam and Caitlyn which he enjoys.  Sean, Colt and I climbed Fanthams Peak on Taranaki Mounga.  It is a steady climb uphill for three hours, with a hard slog on the loose scoria for about an hour.  I am no longer tramping fit as we don’t go as often as we used to.  At one point I considered turning back as I felt overwhelmed, not just by the tramp but my life in general.  Thankfully the moment didn’t last long and we continued to push on.  It was worth it when we reached the peak and saw the view to the coast, the central North Island mountains and Syme Hut.  Sam and Caitlyn also summited Taranaki Mounga over Waitangi weekend.  It was Caitlyn’s first time and she also had to dig deep to make the return trip.  Awesome effort.