Journey

“A human being is nothing but a story with skin around it” (Fred Allen). 

Rory is a great story.  This is evident from his appearance.  On his skin are hints of the content of the chapters of his life.  He has scars on his head and neck from tumor removal, shunt placement, insertion of the cochlear implants and reconstruction of his jaw.  He has other scars from appendix extraction and placement and removal of both a Hickman line and Portacath.  He has a kick-arse scar on his leg where bone was removed to rebuild his jaw.  Scattered around his body are stretch marks.  They are the result of rapid weight gain.  We had to pump eight litres of water into Rory every day for five days to flush out the toxic chemotherapy agents.  This was repeated six times!  In cold weather his hands and feet resemble a corpse and when it is hot they glow bright red.  The circulation in his extremities is impaired.  Chemotherapy has made his skin extremely sensitive.  Salt water, long grass and sweat cause a rash and make him itch.  Cancer treatment has prematurely aged his appearance, he has no hair.  In the area where he received the highest dose of radiation his skin peels even though a decade as passed. 

As a society we place a great deal of value in how a person looks, on the cover of their story.  There is even a Golden Ratio which measures beauty, Phi.  Your score is calculated by measuring the dimensions of your face.  In pictures we are bombarded with daily a perfect score is coupled with luxurious hair, glowing skin and a gorgeous body.  It is perfection.  Rory will never be perfection.  When he looks in the mirror it emphasises the flaws of his face.  He doesn’t say much about it.  He is a young man of few words, but I know he feels it.  On the inside Rory is no different to any other young man.  One day he would like someone to love, someone his own age to walk beside him on the journey of life.  Most young women will not appreciate Rory’s story.  The cover is different, damaged and scary.  I hope one day someone special will look deeper and see his bright green eyes, cheeky smile and the heart of a lion.  I hope one day Rory will have the partner he very much desires.

Since high school has finished Rory spends even more of his week with me.  I took him in for the second dose of his immunisations.  He had a localised reaction to one of the first immunisations four weeks ago.  He got a break from mum with Jonny on Tuesday who took him for a blood test for a testosterone level one week post the injection.  On Wednesday he hung out with Natasha, and three times he did his workout at the gym with Dane.  Yesterday Colt had his good friend Neo over.  In the afternoon we went strawberry picking and had a swim at the Waitara community pool.  Rory had his first swim of the summer.  He used to be a keen swimmer but now shies away.  It is a lot more effort than it used to be.  Rory has to be helped in the changing rooms and to get in and out of the pool.  If there is no family changing room we argue about whether to use the Mens or the Womens.  It makes me nervous when there are a lot of people playing around him.  He is deaf in the water without the cochlear implants and others do not realise this.  A collision could have serious consequences.  Rory refused to try the lower diving board even though it had rails 75% of the way along, and I said I would hold him for the final few steps.  He didn’t trust me to keep him safe.  Once I would have had to drag him off the low and high diving boards.  It made me sad. 

Happy 10^th birthday Colt.  Double digits, one decade of life.  We love you to the moon and back.