Journey

Reflection ….. looking back so that the view looking forward is even clearer. 

If you listen to the news or follow social media 2020 was a train wreck of a year thanks to Covid19, and most people are glad it is over.  2020 was a big year in our family.  As the year drew to a close it seemed an opportune time to reflect, to pause amidst the chaos, and think about what had occurred. 

Rory started 2020 with a large tumor (chondroblastic osteosarcoma) in his lower jaw.  In January it was removed, and his jaw rebuilt, during a mammoth surgery at Auckland Hospital.  It was a huge relief to hear it was removed with (the narrowest) of clear margins.  Four cycles of chemotherapy followed over a five month period at Starship, finishing at the end of June.  Sean and I had ceased to work and we stayed in Auckland with Colt to support Rory.  The first six months of this year can be summarised in five sentences but it does not capture the enormity of what Rory endured.  Covid19 swept in from the side and added additional complexity and fear to our already precarious situation.  Rory had no immune system so our bubble shrank to exclude Sam and Caitlyn and both sets of grandparents.  We were unable to stay at Ronald McDonald House at Auckland Hospital so they provided accommodation in apartments across Grafton Bridge.  Strict new rules at Starship meant Colt was excluded and only one parent was allowed in to support Rory.  This resulted in our family being further divided as Sean and I worked alternate shifts to support Rory and care for Colt. 

When we returned home at the end of treatment Sean and Colt did their best to slip back into our old life but Rory and I were like damaged ships adrift at sea.  I had resigned from my position at Wild for Taranaki and Rory had missed half of Year 13 at Inglewood High School.  We had to find a new normal, rebuilding our lives one brick at a time.  Rory’s recovery is slow.  It is a complex work in progress.  In 10 years he has received brutal treatment for both brain and bone cancer.  He has been left with significant disabilities.  His recovery this time is hampered by the cerebellar ataxia, a neurological condition which prevents Rory’s co-ordination of movement.  Unfortunately it is degenerative. 

I thought we had spent sufficient time in hospital in 2020 but Sean was next, having surgery to repair a hernia caused by lifting Rory repeatedly out of the bath.  Nana Honnor was then hospitalised when one of her hips disintegrated and she developed cellulitis.  It was terrible seeing her in so much pain.  When she had recovered she underwent a hip replacement.  At that stage I was looking around wondering who would be next. 

In spite of the trauma there were moments of joy to light the way as we continued on the challenging journey.  Rory had a clear CT scan in October.  He returned to school part-time and has worked hard at the gym to improve his strength and stamina.  I was able to start work for 10 hours a week in a new role with Taranaki Regional Council.  Sam secured a Plumbing Apprenticeship and turned 21 in December.  Colt continued to bring plenty of energy, joy and comfort to our family and reached double digits (10) in December.  We were able to spend Christmas 2020 in Taranaki with our family intact.  There is much to be thankful for. 

We would like to say a huge thank you to everyone who supported Rory and our family in 2020.  You provided the reinforcement we needed when it felt like everything would fall apart.  Your love, generosity and kindness improved our lives and touched us deeply.  Today is the first day of a new month and a new year. It is the beginning of a new chapter in Rory’s journey.  If I could make a wish on a dandelion I would wish for stability for Rory in 2021.  For clear scans and no further deterioration in his health.  He deserves that, and so much more.

We have spent the last five days visiting Grannie and Grandad Gardiner.  We have enjoyed our holidays with them over the years, at Whakapara, Otama and Dannevirke.  We always find new parts of Aotearoa to explore, even when they live in small obscure places.  The highlights this trip are: Walking in tall matai trees in Mangatoro Scenic Reserve.  A mornings tramp to the A-frame Hut in the Ruahine Forest Park (2 hours of uphill).  Rory purchasing his first Swanndri at NZ Natural Clothing in Norsewood.  Walking along the beach from Herbertville to the Kekeno (NZ fur seal) colony at Cape Turnagain.  Rory managed to walk the 45 minutes each way, supported by Sean and I.  On our way home to Inglewood we made a stop at the Wildbase Recovery Centre in Palmerston North.  Sam and Caitlyn held down the fort while we were away, even bunny wrangling as Fudge should have been named Houdini.