Rory Gardiner's Webpage

07, Feb, 2010

Sunday 7th February 2010


One thing we try not to do in our house is put off things.  The ever present threat of cancer means time is precious.  To put off we want to do may mean losing the opportunity for ever.  One of the things Sean and I have talked about is taking the boys to Waitangi on Waitangi Day so they would have a greater understanding of the development of Aotearoa.  For the past ten years there has been an excuse so this year we decided to seize the day.  I am glad we did.  It was my first time too! 

On Saturday morning we drove to Haururu Falls and parked the car in a paddock.  We caught the free shuttle to Waitangi down the back road past Mt Bledisloe which used to be my kiwi listening spot when I worked for DoC in Kerikeri.  We took the buggy with us as Rory wouldn't have lasted all day on his feet.  We had a walk around the Treaty grounds, stopping to go into whare full of beautiful carvings and tukutuku panels and the Treaty House.  At midday we watched the Navy sailors drill at the flagpole.  The 21 gun salute was very smoky and very loud.  You could feel the firing of the guns in your chest.  Sean and Rory enjoyed the smell of the cordite.  The sailors wore yellow safety balaclavas to protect their faces.  At Hobsons beach we sat in the sun to watch the performers on stage; kapa haka, comedians and singers.  There were plenty of food stalls selling kiwi kai; barbeque, watermelon with cream and icecream, hangi, fry bread, freshly squeezed juice, slushies, scones, corn, candy floss.  We walked across the bridge to Te Tii to get a close up look at the two large navy vessels moored in the bay and the many waka being paddled, including Ngatokimatawhaorua, the largest maori war waka in Aotearoa created from two kauri felled in Puketi Forest.  There were a variety of stalls selling merchandise.  I thought the t-shirt Wahine Toa ... Ngati Licious was very appropriate!  It was a hot sunny day and the atmosphere was relaxed and unhurried, people were happy and enjoying themselves.  I saw and heard people from many different countries in amongst the crowd of 30,000.  Intermingled with the community was the media, and protestors flying both Te Tino Rangatiratanga and the United Chiefs flags.  It was a great way to spend Waitangi Day and for me gave it meaning.  I would recommend it, and we will definitely be back. 

There was a surprise waiting for the boys when we returned to Whakapara hot and tired.  Grannie and Grandad had bought the boys their own bows and arrows, proper junior sports versions.  Sam and Rory have expressed an interest in shooting with a bow, and discussed it seriously with Grandad as a precursor to getting an air rifle when they are older.  Both boys were shocked and thrilled and immediately went outside for their first lesson and target shooting under supervision (of the two big boys Grandad and Sean). 

We have had a quiet day at home today.  Sam and I went for a run/ride on Saturday morning and were thrilled to knock two minutes off our time, but this morning the activity of the week got the better of me and I ended up walking 1/3 (Sam even offered me his bike!).  Rory completed his daily therapy, and we made another visit to the storage unit which contains 90% of our gear.  It seems there is always something else we need (half of which we can't find) and something we don't.  It is a strange way to live.  This afternoon the boys have had a long session with their bows and played the PS2.  I have named and covered all their new books for school (with the help of Sean and Grannie), done some baking, and waded through some of the administration of our lives.

Both boys have loved being back at school this week, and the three of us accept commuting as something which comes along with it.  On Thursday afternoon the children began with silent reading.  Many of the books in the class were chapter books and I could see they were above Rory's level.  After demonstration by Miss Hallet about hot and cold colours the children started their name labels using pastels.  Rory was bothered by children standing close around his desk as the teacher demonstrated.  The teacher would ask the class to move back but as they crept in he grew frustrated and unhappy but didn't take action, so I had to intercede.  I regularly see little things getting to him or overwhelming him during the day but he seems unwilling or unable to effect change.  I'm not sure why.  Possibly because he doesn't want to make a scene, or feels he can't control what his peers do, or does not have the confidence to do look after himself.  It is something I am keeping an eye on and thinking about.  

On Friday Rory volunteered to be Art Monitor and picked Ben to assist him.  The majority of the class went swimming and Rory stayed back to work on his name label.  The other non-swimmers stayed with him and there was a quiet humming atmosphere as they all worked away chattering.  At morning tea Rory played with the Skyball (thanks Lyn!) with his friends.  I have put a plastic box under Miss Hallets desk with Rory's name on it.  It is full of gear he can play use with his friends during break; Frisbee, Nerf mega howler, Skyball, Velcro mitts and tennis ball, small soccer ball.  Only Rory can take gear out of the box.  The aim of the gear is to provide him with ways of actively interacting with his mates in a way which is within his capacity i.e. the gear is large and soft so easily thrown and caught.  After morning tea the children were brain storming with Miss Hallet for a piece of writing about themselves.  It was pleasing to see Rory putting up his hand to volunteer information "I've got tattoos on my back but you can't see them"  Some of his favourite things were sushi, smoothies, Scooby Doo, and the Taranaki thermal spa.  Before lunch the middle syndicate had waiata in the hall.  Rory is struggling to sit on the floor of the hall cross legged as it hurts his left ankle which still has nerve damage as a result of the chemo drugs.  I am working on a pillow for him to sit on as he needs to be seated amongst his classmates to fully participate.  After lunch we went for a swim at the new Dargaville pool with the special needs students.  The facilities were bright and the water was warm.  Rory and I enjoyed it.  As we got changed Rory and I talked about the special needs children and Rory's place within the community of his peers.  I explained to him we are all different, no two people are the same.  None of us are perfect, we are unique creations.  Sometimes because of the way we are made, or born, or because of a bolt of lightning out of the blue our bodies and minds do not function the way they are supposed to.  My eyes don't work properly, and when Sam was born he was whisked away to the Special Care Baby Unit at Whangarei Hospital because he was premature and couldn't breathe.  Our disabilities are part of who we are and in no way make us lesser people.  We need to accept our differences and find our own place in the world.  We have to be kind and tolerant and warm, as we want others to be for us.