Journey

I watched Rory at the supermarket check out this week.  He had a packet of chips on the seat of his walker which he wanted to buy.  He had to let go of the walker to find the wallet in his satchel.  He swayed and wobbled and struggled to get the wallet out.  He wanted to pay cash and swipe his Onecard but there were too many things to co-ordinate so I did it for him.  After paying had to manage the change.  All of this took a long time and there were people queued behind us waiting.  During financial transactions Rory only has a basic understanding of what items cost, whether he was charged the right amount and received the correct change.  Even the simplest of tasks, which we do every day, are a challenge for Rory.  Over the course of his life I have spent a lot of time with Rory but I haven’t walked in his shoes.  We strive for the best for his life.  We have built an impressive support scaffold around him so he has the best chance of success.  I asked Rory today what life is like.  He finds joy in simple things; “getting something right, being active, building things at the Men’s Shed, having a cup of tea, hanging out with my caregivers”.  He feels frustration when; “things don’t end up the way I wanted them to be or when Colt is annoying”.  I asked him if I could wave a magic wand what would he change; “to walk again and be stable because my legs won’t do what I want them to”, to look normal “with hair and not have a reshaped face” to feel energy rather than fatigue in the afternoons.  These aren’t very big things to wish for. 

The second week of the school holidays has been slower paced and quieter.  Sean took Colt away for one night to go hunting and Sam for another.  Rory has enjoyed the movies and Dogy Day care with Tash and time out in the community with Deanne and I.