Journey

Colt and I had a soak at the Taranaki Thermal Spa yesterday.  I watched Colt roll around, completely relaxed, in the warm alkaline water.  He reminded me of a baby in the womb.  How quickly time passes.  Twelve years ago he was in that state.  I have been thinking about how fleeting life is, especially for some.  Two families we know, whose boys were receiving treatment for cancer at the same time as Rory, have sons who lives will be far shorter than they should have been.  All treatment options have been exhausted and the boys are receiving palliative care.  They are aged 13 and 20.  I can’t imagine how anyone can come to terms with this or the pain they feel.  It is surreal, heart breaking and so incredibly wrong.  Cancer will rob both boys of a future.  It makes me so angry.  It is hard to know what to do or say.  I caught up with one of the families, after too long, on Friday.  It was wonderful to see them.  We hugged, talked, laughed and fought back tears.  I did come away with an idea of one small thing I can do which may help a little.  I have started the ball rolling.  My visit made me realise how far our lives have progressed beyond the treatment phase for Rory.  As hard as it is at times we are leading a semblance of a normal life.  We live at home, work in jobs which bring us satisfaction, keep fit and active and are busy in the community.  I sometimes get caught up in the enormity of a full-time working week plus the amount of work required to manage Rory.  Sometimes I feel like I may unravel.  However, none of the tasks is urgent or serious enough to justify burn out.  I need to be better at slowing down, taking a deep breath and feeling grateful.

Rory has been out in the community this week with his Support Carers.  On Wednesday night he attended the Canteen event at Bowlarama.  Rory and I attended a meeting at ACC with his case worker Jez.  ACC are going to take over the funding support provided to Rory by the Ministry of Health and Ministry of Social Development.  This will mean changes for Rory, us and his Support Carers.  We are still trying to get our heads around what this means.  I am working on modifications to his weekly programme which we will discuss with ACC.  A letter in the mail came informing us his kidney function test results were normal.  It is possible Rory will have a slightly elevated creatinine level for life.  However, the doctors will continue to monitor his kidney function because of the treatment he has received.