Rory Gardiner's Webpage

15, Apr, 2010

Thursday 15th April 2010

The progress of our lives is measured with small victories; Rory surviving brain surgery, selling our house, Rory completing treatment, our family unit remaining intact, a clear MRI.  Yesterday a letter arrived from the Ministry of Education stating Rory is eligible for SHHNF (School High Health Needs Funding) until the end of June 2012.  I could have whooped for joy.  It means Rory won’t have to battle on at school alone.  I am not yet sure what is on offer, but it is most likely a Teacher Aide for a set number of hours per week to ensure he receives adequate care and equal access to education.  His teacher at Dargaville Primary is exceptional but there is no guarantee we will strike it lucky again.  Rory’s teachers will only be able to go so far to support his learning in a full classroom.  His needs are complex, unique, and will evolve with time due to cancer and the treatment he has recieved.  This funding will follow Rory no matter where we go and will provide some support, for a while. 

On Tuesday the boys and I made our way home from the Naki.  We left New Plymouth at 7.15am and were the first customers at the Piopio berry farm at 9am (for our favourite icecreams).  I ducked out of the car for muffins at Bosco’s in Te Kuiti and we didn’t stop again until Wellsford where we had lunch and refuelled.  We arrived back at Whakapara at 3pm after a short stop for some groceries.  The boys travelled well, reading comics and magazines Nana had stashed for them, looking out the window, playing CDs, drawing, and Rory had a half hour siesta.  Sean was waiting and happy to see us.

Yesterday (Wednesday) I went to work at Whangarei District Council.  My contract to complete the SoE report expires in four weeks.  I am starting to feel anxious about completing the last couple of chapters, but am determined to pull it together, for the Council and as something I can hang my hat on.  Sean went goat hunting so the boys spent the day with Grannie Gardiner.  They helped Grannie build a dresser for the bedroom, played the playstation, collected all the fallen feijoas from under the trees, Rory built the Lego Atlantis shark, and they had a visit from their cousins Max and William with Auntie Lale.  Sam had soccer practice at 4pm, and went home with his good friend Lewis Miller for the night.  When I got back from work Rory and I went out for a walk together to share our day.

Today Rory started the day with physiotherapy at the Child Health Clinic at Whangarei Hospital with therapist Catherine.  He enjoyed tackling the activities; climbing a wall ladder to collect bean bags and drop them in a bucket, walking up stairs and down a ramp, walking on a beam with support, balancing on the wobble board, stepping through a ladder, and sitting on a one-legged chair reaching up for quoits and placing them on a stand.  Rory has a tendency to tuck his upper arms and elbows in beside his body to stabilise himself, rather than stretch them out like a bird for balance.  After physio we made a trip to the storage unit.  We always seem to be carting gear back and forth.  We are still living out of boxes in a corner of Grannie and Grandad Gardiner’s.  With the change of seasons I have had to find winter bedding and clothing buried underneath our household effects.  I know when we packed up our lives in September we never anticipated we would be in limbo for so long.  Rory and I collected Sam from the Millers, stopping briefly for a chat with Denise.  It has been a quiet afternoon at home as I worked through some of the jobs on my to-do list.