Journey

I am afraid of Rory.  When he walks with the walker it regularly tips as he struggles to balance and control his legs.  I am always ready to grab him to keep him upright.  I am afraid he will fall and break something on the concrete.  When his eyes ‘go funny’ I am afraid it is an early indication of adrenal crisis.  When he has a CT scan I am afraid it will show cancer.  When he gets hot I am afraid it is the first sign of an infection in his VP shunt or jaw.  When he works out hard at the gym the blood vessels on his head enlarge and stick out.  They are damaged from radiotherapy.  I am afraid one will block or bleed and Rory will have a stroke.  When he eats and takes too big bites and insists on eating food which he cannot chew I am afraid he will choke.  I watch him like a hawk all the time, in anticipation of an event which is life threatening.  I am always poised for fight or flight.  Even when he is out of my sight my cell phone is close at hand and I am ready to drop everything and race to the car.  I have never been very good at doing nothing or relaxing but I now find myself constantly tense.  There are brief intervals when I can uncoil the spring a little but it always tightens back into shape.  Rory’s life is different and challenging.  It is always going to demand more of me than Sam or Colt.  It is always going to require infinite patience and heightened awareness. 

Rory completed his next round of immunisations.  This week we are heading to Auckland.  Rory is scheduled for a minor operation at Starship Hospital to remove his port, an MRI scan to see if we can capture the images of his brain stem which have so far eluded us and a clinic appointment with Dr Stephen. 

Rory slipped further into routine this week.  He spent a day with Rob and Natasha and completed four gym sessions with Dane.  He has swum at the river, the beach and Inglewood pool.  On Sunday night we went to the Festival of the Lights at Pukekura Park to listen to celtic band Shaskeen Reel on the Hatchery Lawn.  We were hesitant to go as Rory is tired and fatigued by dinner and difficult to manage on uneven paths and in a crowd.  Colt waited patiently in the queue to get his face painted with UV paint.  After the music we wandered around in the dark to look at the lights.  It was too much for Rory he became overwhelmed and stressed and had to go back to the car.  We were lucky to experience as much as we did.