Rory Gardiner's Webpage

09, Apr, 2010

Friday 9th April 2010

I watch the boys a lot.  I’m not sure when I first started doing it but I think it must have been when the fog cleared a little at the end of the surgical phase of Rory’s treatment.  Having a child diagnosed with a life threatening illness is something of an epiphany.  Suddenly you realise what life is all about, and what is most precious.  You cease to take anything for granted and value all experiences soaking them up like a sponge.  Both boys are under the weather with change of season/holiday viruses.  Rory has stabilised, but Sam has gone downhill.  When they are unwell it makes me anxious, and on high alert.  I have been up to Rory in the middle of the night due to coughing fits for the past two days.  It makes it hard to get motivated for a morning run!  I went out alone this morning as Sam wasn’t up to it, and I managed to cover the 10km block.  We decided to make the most of the fine weather and get some fresh air by heading up Mt Taranaki to walk the Ngatoro Loop track through goblin forest.  On the drive to the North Egmont Visitors Centre a kukupa flew low beside the car.  It was beautiful in the forest, the air was clear, it was quiet, and the walls were many shades of vibrant green.  The sun shone down into the open mossy glades and it was like being in a different world.  Walking was hard work for Rory as the ground was uneven, and the steps steep but he persevered.  We took it at his speed stopping regularly for breathers.  He made it along most of the 45 minute track holding my hand.  I only carried him for about 5 minutes.  After lunch we played nine holes of golf at Kaitake golf course with Nana Honnor.  Rory walked and played the odd holes (5).  I pushed the buggy.  Nana played a good round and Sam had some excellent shots, being on the green for one on the 9th hole!  Rory never gave up.  He easily had four times as many shots and battled air shots and being unbalanced.  He remained patient and calm.  It is too easy to think he is fine and getting back to normal.  The Neuropsychologist said mentally and physically he is suffering extreme fatigue as a result of the treatment.  There is no way to understand or appreciate what life is like for Rory.  I know this afternoon on the golf course was a massive effort for him and to see his strength and determination caused a tightening in my chest.

We woke on Wednesday to the first snowfall on Mt Taranaki for 2010!  It was beautiful.  No wonder it had been so cold!  Rory continues to get up at 5.30am.  He was coughing on Wednesday morning so came back to bed with me for an hour.  We talked, cuddled and played games.  We spent the morning towning around.  I took Rory to the emergency doctor who said his cough/cold is viral so there is nothing I can do.  In the afternoon I took the boys to Brooklands Zoo.  They enjoyed watching the Capuchin monkeys.  We walked down to the Bowl and fed the ducks.  As soon as we started throwing out bread ducks walked, ran and flew over enmasse.  There would easily have been 150.  We walked through Pukekura Park to the playground where both boys had a slide, swing and a climb on the fort (my heart was in my mouth as Rory climbed up and down the ladder).  Rory (no. 1 chef) helped me make pizza for tea when we got home. 

Yesterday (Thursday) I was up to Rory at 1am and 5.30am.  Sam got up with a cold.  Neither Sam or I felt like doing 10km so we went for a gentle walk/ride for an hour.  We called in at Rugby Park where they are doing work on the grounds in anticipation of the All Blacks vs Ireland game in June.  We managed to find some wild dahlias and took Nana home a bunch.  At 10.30am we met Wendy, Logan and Mikayla at East End surf club.  Sam and Logan used their rip sticks (like a skateboard only with two wheels) along the coastal walkway to the wind wand playground.  Sam and Logan are only a month apart in age and love each others company.  Rory walked a bit and rode in the buggy.  Wendy pushed Mikayla who is now 16 months old and totally adorable.  All the kids had a swing at the playground and we walked back.  I dropped Rory’s glove in between the huge breakwater boulders and couldn’t reach it to retrieve it.  Wendy produced a bike pump and fished it out on the end.  When Logan and Sam came back to see what we were doing we commented we were saving the world – it’s what mums do!  We had lunch back at Nana’s.  She had made her delicious cheese scones.  The boys played together after lunch while Mikayla investigated everything.  She and I sat down and played with the Barbies.  Wendy and I had a stroll down memory lane at the stuff Nana had saved from when I was a girl.  When they left Wendy and Logan left us with some bags of clothes which Logan had grown out of.  Rory was thrilled with the camo clothing and Star Wars tshirts!