Journey

Mirror, mirror on the wall, I refuse to hear your beck and call, You can not show the best of me, for I am much more than you can see.

When I look at Rory I see the whole of who he is.  His lack of hair, cochlear implants and misshapen jaw do not register.  I see a handsome young man who I am incredibly proud of.  However, I know the modifications to his appearance register for other people.  We regularly see the looks on their faces as they encounter Rory.  I asked Rory what he sees when he takes a selfie or looks in the mirror.  He says he can see his jaw has shifted and that his face is not symmetrical.  While he would give almost anything for it to be otherwise I think he has come to accept what Dr Nick has said, it is currently as good as it can be.  When we look at photos of ourselves, and in the mirror, what we see can be distorted by what our minds make us focus on.  This causes a different perception of ourselves and makes us feel bad about our appearance.  There is so much pressure in society and the media to be perfect, to be beautiful.  It is an unattainable goal.  Cancer and its treatment have altered the way Rory looks.  He copes with this remarkably well and takes pride in his appearance.  I hope one day he will meet someone who will see the whole of who he is, as we do, and stand beside him to hold his hand.

On Labour Day we had lunch for Nana Honnor’s 76^th birthday.  Rory has covered part of the coastal walkway on his bike with us and on a mobility scooter with ACC OT Leanne.  He has also had a session with ACC Clinical Psychologist Andy.  I have spent four hours sourcing data on Rory from the last five years for our ACC claim.  Yesterday Rory spent the day with Jo.  We met her at the studio of local artist and jeweller Sarah Tullett as Rory is getting a silver ring made.  Jo and Rory went on to the movies, lunch and to some cooking at home.  Sean, Colt and I spent the day covering North Taranaki visiting artists in the Taranaki Arts Trail.  We like sculpture, ceramics, fibre, weaving, and carving.  There are so many talented people and beautiful pieces of art.  The most poignant moment of the day came while we were having lunch in a café.  A couple in their late 60s came in accompanied by their son who had significant impairments.  It was like looking into a crystal ball and seeing our future.  It was as heart breaking as it was heart-warming.  They sat with us while we ate and we shared a conversation.  Having a child with impairments alters your life forever, there isn’t an end point, not remission, or cure or death.  This couple built a life around their son.  As we drove away I pondered the question I am most fearful of.  What happens when we are gone?