Rory Gardiner's Webpage

22, Mar, 2010

Monday 22nd March 2010


I'm struggling a bit at the moment.  We have a lot of balls up in the air.  My blogs on Rory's website only skim the surface of the issues we face, and the difficult decisions we are forced to regularly make.  Some is too personal or too painful to share.  The blog is different to a diary which no one else reads.  It is an open book.  I am conscious all the time not criticise or offend anyone, or be unappreciative.  I keep to myself thoughts and feelings I know only those who are in our position would understand.  They would seem completely crazy, unwise, impractical, and occasionally dark, to everyone else.  Some days I feel my tears just under the surface.  Sean and I talk, and talk and talk some more but make little headway.  I struggle to make decisions, because I want to make the right decisions.  My heart regularly says to do one thing when my head says to do the other.  I often go round in circles.   I am conscious of how our decisions impact on those around us, the boys, our parents, extended whanau, and friends.  Sometimes I feel overwhelmed by the uncertainty and hardship which hang like clouds on our horizon.  It is difficult to navigate in these conditions, especially when we strive to provide the boys with love, and a sense of calmness, confidence and security. 

On Friday afternoon the children worked on A2 sized profile themselves for the walls of their new class room.  They may get to move in before the end of the Term.  The class is room 3 but are currently residing in room 7 while room 3 is renovated.  Rory worked silently on the floor on his own.  Trudi greeted me with a lovely surprise after school, the proceeds of her Tupperware raffle for Rory.  Windfalls like this help us manage financially as we support Rory during remission (Thank you Trudi).  After school Rory saw the Urologist and he will need a minor operation in the next couple of months. 

We took the boys to the St Francis Xavier Primary School gala on Saturday morning.  Sean and Sam took off for paintball, the coconut shy and food, while Rory and I rummaged in the toy and book stalls, and got a treat at the sweet stall (I have a weakness for home made coconut ice and chocolate fudge).  We met up with Kaye, Conor and Zac Wily who took Sam for the weekend.  After the gala they were going to see Alice in Wonderland at the movies.  After a quick lunch at Whakapara I went to work with Sean.  He was undertaking a goat control job for a forestry company.  It was a productive afternoon with 24 kills.  Unfortunately the last 7 were near the bottom of a gully and the only way to them was through thick gorse.  Gatorz only come up so high so my knees and thighs are like railway tracks.  Unfortunately when I slipped I put my hand in a crispy brown gorse bush.  My left hand is on fire and full of prickles.  Rory enjoyed spending the afternoon relaxing with Grannie and Grandad Gardiner.  He made a new lego creation, played a little on the playstation, watched a movie and played board games. 

Yesterday (Sunday) we had a quiet day at Whakapara.  In the morning Sean went for a training run and I went out for a walk with Rory.  We covered the length of McLennan Road (6km).  Rory walked for a total of 2km (in three bursts) holding onto my hand or the buggy.  He rode the rest of the way.  It was a warm clear morning.  We were lucky to have a stoat pop up onto the road in front of us rolling a hens egg it had stolen from a chicken coop inside the roadside fence.  It was very close and continued to roll the egg across the road.  Once it became aware of us it rolled the egg faster, but abandoned the egg on the far edge of the road as we took a step towards it.  Rory enjoyed having the neighbours dogs come out to greet him, and seeing two pigs up close to the fence.  We baked some muffins for morning tea when we got home.  The remainder of the day was spent odd-jobbing.  We have been lax with Rory's Neuro-developmental therapy programme over the past month.  We saw Therapist Ian Hunter at the end of February.  He assessed Rory and modified his therapy programme.  Since then we have been busy with Rory's Wish, and afterwards recovering.  We finally re-started on Sunday afternoon but it was a bit of a disaster.  Rory was tired, and it was hot.  He struggled with the exercises, and while he was comfortable with Sean coaching him he took my comments as criticism and cried.  I think it is too much for Rory having me as mother, teacher aide, and therapist.  I think he will do better with Sean as 'sport coach' with me as assistant for the patterning exercise which needs extra hands. 

It was back to school this morning.  It was quieter on the drive over without Sam, and quieter yesterday too.  It isn't the same without Sam.  It feels like there is something missing and our lives lack a certain spark.  It makes me realise how much we function as a family unit, and how important we are to each other.  I keep thinking about Rory's Wish.  He and Sam loved the holiday in Australia (our first as a family), and they have happy memories they will cherish, but it was over in the blink of an eye.  Family is forever.  I remember when Rory was born Sam was interested in his baby brother and enjoyed 'helping' care for him.  When Rory was a little older it was clear he adored Sam, and always wanted to be involved in Sam's world.  During Rory's treatment for cancer Sam provided something Sean and I couldn't.  He made Rory alive.  Both Rory and I were happy to see Sam playing at school with his mates when we arrived.  The school day started with assembly.  Sam stood up with the other swimmers who will represent Dargaville Primary at the Northern Wairoa swimming sports on Thursday.  The other children gave them a clap.  The class day started with writing; brain storming adverbs, and writing a conversation in pairs using speech marks.  At morning tea Kody came up to me and said he and Korie were trying to get Rory out onto the playground.  I grabbed the sky ball and took Rory over.  He and I played throw and catch and three other children joined in.  After morning tea the children completed a writing worksheet.  I worked alongside Rory prompting him and it went well.  At maths Rory's teacher had invented a new diagram for Rory to complete for his basic facts testing.  He was able to work through it while the other children were tested verbally.  It was a great success.  At lunch I took Rory and the skyball back out into the play ground even though Rory was not keen.  When the bell went there were a dozen children playing together.  Rory doesn't like the feel of the asphalt under his feet but he won't wear shoes (because no one else does).  He doesn't like the noise and activity of a lot of children around him, and he doesn't like not being able to throw and catch perfectly (although no one else can either).  He prefers to retreat and become reclusive but I won't let him.  Over time he will become socially isolated, and angry, as have many of the children who have survived medulloblastoma.  It will get harder during his teenage years.  It is also hard on his close friends who are torn between wanting to stay with him, and wanting to play hard out in the way boys do.  If Rory doesn't meet them half way he will be left behind.