In this together

Photo Sean Leigh Dec 1998 Haururu Falls

Why don’t we talk openly and honestly about the state of our relationships?  Are we embarrassed?  Or afraid to look like failures and have people think less of us?  Is it because it is personal and raw?  To maintain a healthy long-term relationship requires effort.  Sean and I have been together almost 22 years.  I am fortunate, he is one of the good guys.  Sean has a soft heart.  He is mostly a loner who loves his family.  He helps with the boys and chores around the house.  He is conscientious, doing his best at his job.  His passion is hunting.  He is the best hunter I have ever met, bar Grandad Gardiner.  Sean is still fit, attractive and with a zest for life in middle age.  I know this but it makes little difference to how things are. 

Over the past 11 years cancer has been like Bouncing Betty land mines in our relationship.  The mines explode at random and tear jagged holes in the fragile fabric of our partnership.  The holes are never repaired adequately so over time it can feel like our relationship is tattered and flapping in the breeze.  Rory consumes a vast amount of my time and energy.  It never stops.  Even when he is with an alternative carer I am on high alert on the other end of a cell phone and I am working (or my mind is racing) to solve the latest challenge.  Rory has serious complex medical needs.  He has specific educational needs and it requires work to put supports in place.  I am also largely responsible for his health and well-being.  Colt, because he is only nine, needs mum and Sam still needs me on occasion (but may not admit it).  Continuously giving drains all my reserves so I must take care of myself.  No one else will.  Rory will need me for the length of his life.  I refuse to put the needs of another person ahead of my own.  As a result Sean and our relationship are lower in my life’s priority list. 

When one parent gives beyond what is healthy it builds feelings of inequality, resentment and disappointment in a partnership.  Mothers sacrifice and carry a burden which is so awkward and heavy it is hard to shift.  We expect dad’s to make our lives easier but this is generally not the case.  Most dads work full-time and it typically doesn’t occur to them to do more at home except when asked.  As a result of the negative feelings some days I am uptight, angry and unhappy.  I know I am my own worst enemy.  I am terrible at rest and relaxation.  I am driven, determined and stubborn.  One year one of my Aunties compared me to Helen Clarke over Christmas lunch.  I set the bar high for all in my life.  I will do no less for Rory.  

Sean carries the burden of being the primary bread winner.  It is his priority.  He has a good job at Taranaki Regional Council but he would be happier contracting as a Professional Hunter.  We cannot afford such financial uncertainty or the staying away from home which it would require.  Sean feels pressure to do a good job at work when his head and heart are often distracted by Rory and other challenges within our family.  At the completion of Rory’s treatment for osteosarcoma Sean went back to work within days of arriving home.  Sean also struggles to get ‘me’ time to blow the lid off the constant pressure of life with a child with special needs.  He constantly feels guilt for not sharing the load when he knows I struggle.  He feels what he does isn’t good enough. 

We both know our relationship hasn’t been a priority.  On down days we live under the same roof and fail to see goodness in our partnership or the people we were 22 years ago.  Maintaining a healthy long-term relationship requires effort and we currently have little in reserve.  We are both traumatised, numb and tired.  Thankfully our relationship continues to survive in spite of this, as we individually survive.  Why?  Because we are in this together.  We are a team.  If we can continue to be partners at the darkest of times then the invisible network of connections is still strong enough to form a fabric.  After what we have been through it is enough.  As Rory recovers so will we. 

I push Rory a little harder each day.  I am a tough mother.  He is not going to recovery sitting in a wheelchair or on the couch.  When I pick him up from school at 11.15am each day I make him walk home with the walker.  It is challenging as there is sustained effort.  He kicks the walker legs and tilts it on uneven ground.  I am close alongside for support.  But he is achieving it!  We received the news we can use some of the funding allocated to Rory for his needs to purchase the Xtreme Outdoor walker so this will make things easier for him and provide new opportunities.  On Monday Dane created a new workout programme for Rory which is a little more challenging than last week.  Last night he attended Batallion Jiu Jitsu with Sean and Colt and the second class also built on the initial work.  Everything is a step in the right direction. 

Rory’s blood lymphocyte count is falling (0.8) so on Tuesday morning he and I spent two hours at the Children’s Ward so he could receive IV Pentamidine, an antibiotic which helps prevent pneumonia.  Rory will receive it every four weeks while his counts are less than 1.  Nurse Jane was run off her feet so a one-hour infusion turned into a two hour visit.  We are still waiting on an MRI date for the imaging we need for Neurology.  Rory rode Dixie at Riding for the Disabled (RDA) on Tuesday afternoon.  He enjoys being with the horses and managed to ride outside the arena and for a longer length of time.  It was wonderful for me to see him in action.  He was smiling.  The staff and volunteers at RDA do a great job of supporting their riders and ensuring therapy is also included.  After the ride we met with surfer dude Rob who is willing to give it a try being Rory’s companion every second Tuesday.  I am currently working through the paperwork for this. 

Thank you to Melissa for the referral and a good word. 

Thank you to the Tong family for the surprise parcel with delicious meals and treats.

Thank you for Dianne and Spatialize Consultancy for the offer to help us purchase the Xtreme Outdoor walker.