Rory Gardiner's Webpage

21, Feb, 2011

Monday 21st February 2011

Small miracles are a bit like mushrooms, they rise up at random, without warning, without input, and defying explanation.  Both are an unexpected gift.  A small miracle happened with Rory a week ago.  At lunch time, while his Teacher Aide was busy completing a task for the teacher, Rory walked onto the school field to join a game of soccer the boys were playing.  Rory has hung out close to his class room at lunch breaks since we moved to Inglewood.  He has stubbornly refused to move more than a few metres away.  We (his Teacher, Teacher Aides, Sean and I) have tried everything to get him to move but he has stubbornly refused, getting distressed when we applied pressure, so we left it.  And now it has happened.  We are very happy for Rory.  It may sound like a small thing, but Rory, and many of the other medullo kids, struggle to keep pace with their peers because of their physical/cognitive difficulties, and a fear of being hurt (and being subject to more treatment in hospital).  The disparity widens as they grow up so many medullo teenagers are socially isolated with few friends.  There is much anguish for them, and their parents, as cancer continues to take from their lives.  We are determined to give Rory as strong and broad a foundation we can so he has a happy fulfilling life. 

Both boys have been subject to national standardised testing this past fortnight.  The results threw up issues for both.  Sam’s results were above average, and his science result was exceptional.  His teacher is keen for him to join the Assist programme at Inglewood Primary for gifted kids.  We were very proud to hear this.  Rory’s results were lower than I expected as he went through the testing unsupported i.e. without someone to read/listen or write for him, and was not given extra time.  Rory needs extra time, and support, for there to be an accurate measure of what he knows and can achieve.  How assessment is conducted will be an issue for Rory his whole life.  I have a meeting with the school next week.  I have reviewed Rory’s Health Care Plan, and drafted a new IEP (Individual Education Plan) which the staff and I will finalise.  There always seems to be plenty of paper work for Rory.  I am also organising his return to Starship in the middle of March for an MRI, blood tests, audiology check, and an appointment with his Oncologist Dr Stephen. 

Sam has commenced Technology now he is an Intermediate student, beginning with Art.  The class walks down to Inglewood High School for these lessons.  Both boys have had mates over after school the past two Fridays.  Our house has been alive with the rowdy energetic activity of 5-6 boys; pizza eating, nerf gun wars, lego building, playing on the tramp, ball and water games, plus a little time on the Playstation and Nintendos.  I like the boys company and I am a far more relaxed mother than I was 10 years ago.  Colt is now two month old.  He loves being in the front pack on the trips between home and school, and during our adventures.  He is a nosey parker often looking around, then falling asleep on my chest when he is tired.  He sleeps through the night and has grown into three month sized clothes.  He has started knocking the toys on the play gym with his hands.  I am looking into the possibility of having him looked after by a PORSE Home Educator in Stratford one day per week so I can return to work, yet still breast feed him.  Colt and I went to work together at TRC for three hours last week.  I got a lot done but it was hard work!

We have decided to apportion our weekends into one day of adventure and one day of recovery with jobs to keep our home running.  We have recently explored a couple of new places.  We went rock hopping along the coast from Back Beach to Oakura Beach.  We have tried this once before but had to turn back after an hour.  This time we made it to Tapuae Beach, 2km short of the full distance.  There were heaps of crabs, and we saw a Reef Heron perched on a rock.  It was a hot sunny morning and it was harder going than we thought.  The boys and I used Harakeke sticks for balance, but after three hours at a slow pace with lots of stops Rory was knackered.  Luckily Nana picked us up and chauffeured us back to our car.  We learnt a valuable lesson and reckon it will be third time lucky.  We have explored a new section of Everett Park which contains a glow worm cave.  It is a giant rock overhang, damp, and full of lush green vegetation.  It had amazing energy.  The boys went for a swim in the river, and then we checked out neighbouring Vertical Horizon outdoor camp where we are going to have Rory’s birthday at the end of next month.  On Saturday we had a fantastic tiring day walking the northern section of the Whitecliffs walkway south from Tongaporutu.  The gravel track runs through private farmland below high papa faces on a cliff top above the sea.  After 4kms it comes out on a beautiful secluded beach at the mouth of Waikororoa Stream.  There is a phenomenal cave in the cliff which opens out to a huge natural amphitheatre on the edge of the waves.  The boys had a refreshing swim.  We walked a little further to the bush edge and checked out Te Horo stock tunnel.  It was opened in 1889 after being dug by hand, and is 80m long.  It is a low tunnel in the base of a cliff and was the main overland bush and beach route from New Plymouth to Auckland.  It was used for sheep and cattle, and was the mail route until 1909.  It is now closed, and restoration is dependent on the outcome of legal action between the landowner and the District Council.