Rory Gardiner's Webpage

13, Dec, 2009

Sunday 13th December 2009


I look forward to the day life's not a battle, when I can feel positive because there is a good chance what I wish to happen, what needs to happen, will happen.  I called Starship on Friday to see if Rory was still on the theatre list for next Thursday afternoon to have his Hickman line removed.  The response was not positive.  The list is very full and his place uncertain.  I suspected this would happen but it still threw me into a spin.  I sent Dr Stephen an email outlining my concern, and the reasons why we wanted Rory to have the line out sooner rather than later; he has waited four weeks, there is a continual risk of infection, it is a hindrance to his recovery (physical, mental and emotional), our imminent move to New Plymouth and the need to connect with a medical team, and the organisation of our lives which allowed us all to be there next week to support Rory.  Dr Stephen was optimistic about Rory's operation but nothing is definite.  Inserting lines takes priority, and if the theatre list is so long it takes all day to get through Rory will get bumped.  We would then have to make Plan B which would be complicated by the Christmas/New Year holidays.  It's hard to contain your feelings when you are powerless to affect the outcome of serious decisions which affect your children.  You have to force yourself to stay calm and accept what comes, rather than fly off the handle and scream and cry out of anger and frustration.  I find this difficult to do.  I took more than a few deep breaths.  Sometimes it is hard to be positive, to believe what is best will happen, because it doesn't always.  If you have believed the best the let down is a long fall with a hard landing at the bottom.  We will take a share of Dr Stephen's optimism and stick with our plan to head down on Wednesday and hope the operation occurs on Thursday. 

On Thursday night Sean and I went to the OSNZ (Ornithological Society) pot luck Christmas dinner.  It was good to see everyone again but we have all gotten older.  As I looked around the room I wondered who is going to replace these interesting knowledgeable passionate people who have studied and cared for NZ birds for decades.  I felt sad because it may be the last time I see the Northland team.  As Sean and I contemplate a move to Taranaki I realise there is much I love about Northland, and it won't be as easy for me to leave as I thought it would be.  Sean and I have talked ourselves round in circles about how we could make life work from here.  We have even drawn a diagram with the key issues, and the pros and cons of each location.  There is one big unknown in the middle of all the scenarios - Rory's future.  He will not be able to return to school alone, and he will not qualify for a teacher aide.  This means one of us will have to be in the classroom with him every day, and we don't know for how long.  This parent will have to spend time and energy working with his teacher, learning about how best to enable his learning, and what long term effects may surface and how to manage them.  They will also have to support Rory's physical therapy.  Caring for Rory and supporting him will be a full time job.  It will likely be mine.  My career will have to go on hold, which leaves Sean to hold us up financially.  This will likely require a change in his career as contracting is too unpredictable, and does not have built in protection such as leave. 

On Friday I worked at Whangarei District Council.  Sean took Rory to the Child Health Clinic at Whangarei Hospital as he had woken two days in a row with a mucky eye.  We had also noticed a change in the colour of the skin on his lower legs and feet when he was in the shower in response to the heat.  Dr Ollie said his eye was fine, and the discolouration (purple with pink spots) was due to a change in his circulation which was likely brought on by the chemo.  It is something to keep an eye on as one of the long term effects of the treatment he has received is strokes caused by blood clots. 

Yesterday (Saturday) we all had a quiet day at home.  Grandad Gardiner and Sean went fishing (at 3.30am!) and came back with some kahawai, snapper and blue maomao for tea.  We had a visit late in the afternoon from Auntie Lale, Uncle Bill and cousins Max and William. 

Today Sean, Sam and I went goat hunting.  I felt sad as I watched Rory waving good bye to us on the deck.  In the past we would never have left him behind, it would have been the four of us making our way through the bush together.  But Rory isn't up to it at the moment, and while Sean and I carry him short distances on occasion it would be totally impractical while hunting.  I enjoyed being in the bush, the view from the highpoints, the fresh air and exercise.   It was fine and warm and we got onto three small mobs of goats so Sean got 18 animals.  Sam was out of practice being in the bush.  A year ago he would have moved through like a mini version of Sean, today I had to teach him all over how to move and behave.  It didn't take Sam long to remember, although he was nervous sidling around the steep ridges which surprised me given he had been fearless at Adventure Forest last weekend.  Rory had a neat day with Grannie Gardiner.  He was number one chef baking bread and a sponge cake which we enjoyed for dessert, made models with the playdough, cleaned the radishes out of the garden, drew a neat picture for Sam of a cowboy with his horse, and played the Playstation.  Each day he completes his Neuro-Developmental Therapy which takes about half an hour.  For the left handed activity yesterday we did a large wooden puzzle from the Jungle Book.  He derived a great sense of satisfaction from using his left hand to fit the pieces.  Today he played Hyperdash with Grannie and beat her!