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Rory Gardiner's Webpage

11, Aug, 2013

July 2013 update


The boys have been grappling with growing up issues and as a mother it is hard to step back so they can develop independence and resilience.  You want to be there to make sure they are safe and so you can be part of their lives, but this is not always the right thing to do.  The boys have to learn some lessons on their own.  On several occasions I have had tears in my eyes as I have stepped back.  When they are home keep the lines of communication open, and make sure they know Sean and I have their backs always.

The biggest change for Colt over the last couple of months has been the transition from in Home Childcare (Porse) to Inglewood Community Childcare.  Sharon and her husband John have moved to Australia.  Sharon and the children in her care have been such a big part of Colt’s life.  It was sad to see her go.  The children had a farewell party, and there were hugs, presents, and photos, and I wrote Sharon a reference.  We wish her and John all the best on the next stage of their journey.  We were lucky Inglewood Community Childcare had space for Colt and we made several visits during the second week of the school holidays.  Last week Colt attended on his own and upon drop off he was upset and bewildered.  The teachers comforted and distracted him, but I felt like I had abandoned him.  It has been easier this week.  Yesterday Colt chose some books and hopped up on the couch with teacher Ann and I gave him a kiss and left.  I watch him for a little while through the window when I arrive in the afternoons and he is always calm and busy.  He runs to me and throws himself into my arms when he spies me.  Colt and I continue to attend Playcentre on a Monday morning.  Nana and Sam have also been.  The theme this term is Aotearoa, and last week I was on Duty.  I led a walk in a local bush reserve (in the rain) and when we got back to Centre we made a tea bag garden and weta houses.  Sean brought in his stuffed possum and ferret from work and gave a talk which was a big hit with the children.  Colt spent a day with Nana in the holidays and loved going to Chipmunks where he throws himself down the big slide scaring Nana.  Colt has had a mild bout of hand foot and mouth disease which he unfortunately gave to Rory

A number of things have unsettled Rory recently.  He has had two ear infections in his left ear likely due to the hearing aid mold rubbing.  This has meant he hasn’t been able to wear his hearing aid so has struggled to hear.  He has an appointment at the Hospital in a couple of weeks to get a new mold.  Rory caught hand foot and mouth off Colt and the symptoms were a lot more severe.  His feet were quite blistered and sore, and he felt miserable for several days so was away from school.  He was going to miss his class photo but Sean took him in so he could be included.  Rory was absent from his class photo in 2009, the year he was diagnosed with cancer.  His class mates held up a life sized photo of Rory’s head so he wouldn’t be excluded.  We have made it a priority for Rory to be in the class photo every year since.  Twice he has been unwell on the date so one of us has had to take him to school specifically for the photo.  Rory has experienced some bullying at school, and came home on Friday wishing he didn’t have the life he has.  It is very important to Rory to fit in, to be ‘normal’, liked, and included in the activities of the ‘cool’ kids.  I feel a lump in my throat when he asks “why did I have to get cancer?”, and say “I don’t want to be me, like this with no hair, I want to be the old me.”  I tell him I don’t know why he got cancer but there is nothing we can do about it.  We have to accept it happened, and he has to know he is still a great person for lots of reasons.  He is bright, cheeky, determined, loving, hard working, and good looking.  I tell him the people who matter are the people who love him and accept him as he is.  They value and include him, and those who don’t aren’t worth worrying about.  Rory has also been having difficulty at guitar lessons and kapa haka.  He has limited strength and control in his left hand and arm which has made playing the guitar a struggle.  Mastering the actions at kapa haka, while singing, is a huge challenge for him.  He has had several down days where he feels like he sticks out, and wants to give up.  We have withdrawn him from guitar lessons and are working with the school to improve things for him at kappa haka.  There have been lots of positives too.  Rory has enjoyed playing soccer this winter, and the team finally had a couple of wins after a number of losses.  Rory has also played in the Inglewood Primary senior team for inter-school soccer.  Colt and I watched him play cousin Sacha at Vogeltown Primary one afternoon in the rain when the pitch was sodden with water.  I have attended Parent-Teacher interviews for Rory and numeracy remains my number one concern.  It is the subject which many medullo children struggle with.  I think national testing later this year will show Rory is below where we think he is at, especially given the time constraints around testing.  Rory was chosen to attend the Assist (gifted kids) Science programme for two days at Stratford Primary, and a Taranaki-wide Leadership Conference.  We were pleased it was recognised he has leadership potential even though he isn’t the best at sports or academic work.  Rory is currently putting time into his speech ‘Everyone should ride roller coasters’.  I have reviewed Rory’s Health Care Plan for school, and taken him to his annual eye appointment where thankfully everything was normal.  I have been working my way through a scientific research paper from St Jude Children’s Research Hospital in Memphis, USA on health outcomes among adults treated for childhood cancer.  The summary states ‘the percentage of survivors with 1 or more chronic health conditions prevalent in a young adult population was extraordinarily high’.  For the remainder of his life Rory will need to be subject to health monitoring, both for conditions which could lead to death if not detected and treated early, and for those that if treated would improve his quality of life.

Sam is away this weekend in Tongariro on Central Districts winter camp with Canteen.  The activities list includes; snowboarding, skiing, paint ball, swimming and hot pools, and arts and crafts.  We expect him back tonight exhausted with lots of stories to share.  After attending the Canteen Taranaki 2012/13 AGM Sam stood for the Committee for 2013/14.  It is good for Sam to be around other teenagers who have had cancer impact their lives.  I don’t think he realises the impact cancer continues to have on all of us, and we don’t know what is around the next corner.  I have attended a number of meetings at Inglewood High; career and subject choice evening, Year 9 boys behavioural meeting, and parent-teachers interviews.  Sam is passing all subjects, and achieving merit and excellence in some areas (PE, music, science, maths) so I can start to see the beginnings of his career path.  He is worried he doesn’t know what he wants to do when he grows up but I tell him there is no hurry, it will show itself in good time.  Right now he needs to focus in class, and produce work to the best of his ability.  We have recently been reminded we now have a teenager in our house as twice groups of girls have shown up at our door, and Sam accidentally broke a window at school during a silly altercation with a couple of boys in his class.  We received the bill.  We have had talks about honesty, boundaries and being the better man.  Sam loves the soccer season and their team is currently third on the U15 table for the season.  Sam made it to the second rep trial for the Taranaki under-15 soccer team, but missed out on selection.  This is the second time this has happened and he was very disappointed.  He is keen to attend any training clinics and try again in 2014.

Our adventures as a family continue.  The wetter weather has seen us out and about close to home.  We had a walk around Lake Rotomanu, fed the ducks and geese, and watched the remote controlled cars whizzing around the neighbouring club track.  We have cycled the length of the New Plymouth coastal walkway from Ngamotu Beach to Bell Block and back (23.5km).  Colt loves being on the back of my bike chattering about everything we go past.  We took Jason, Wendy, Logan and Mikayla out to Everett Park for a walk after pot luck lunch at our place.  It was great to see them again and catch up on the news.  Logan and Sam talked Year 9 boy stuff while Colt and Mikayla played happily together.  Rory cruises between everyone.  One afternoon during stormy weather we had a power cut which meant dinner by candlelight.  The following day Nana and I took the boys and their cousins Sacha and Corbyn for a walk in Pukekura Park.  There was fallen debris everywhere, and the Parks staff were cleaning up.  We spent a cold day goat hunting in the rain at Mangamingi, and in complete contrast spent a hot sunny afternoon tramping at Whitecliffs.  The boys found a tiny jellyfish swimming in one of the rock pools,  It was simple, delicate and beautiful.  I am currently reading ‘Children of the Forest’ to the boys.  It is a true story from the life of Alfred Messenger who loved at the military garrison at Pukearuhe (White Cliffs) from 1883-1885 when he was a small boy.  As Sam and Rory boys know Whitecliffs well it is easy for them to put themselves in Alfreds shoes almost 130 years ago.  I organised a community planting day at the Herekawe Stream in July for the Taranaki Tree Trust.  A total of 770 native plants were planted by 70 volunteers including Nana and Poppa, Sean and the boys, in a productive couple of hours one Saturday afternoon.

Our two biggest adventures have been in places we haven’t been before.  Sam and Rory flew to Whangarei and spent the first week of the school holidays staying with Grannie and Grandad Gardiner.  The week was spent fishing, catching possums for fur plucking, shopping, watching movies, playing games, and enjoying time together.  Mother Nature meant they stayed a day longer as their flight was delayed 24 hours due to fog at Auckland airport.  The weekend the boys were away Sean and I decided to take Colt on a road trip.  We drove north to Waitomo then headed inland, stopping at some of the areas famous natural wonders; the Mangapohue Natural Bridge, a 17m high arch over a limestone gorge with a stream running throughit; Piripiri Cave, a glow worm cave with stalactites and stalagmites which from the outside appears as a dark black hole in a cliff face; and Marokopa Falls which cascades down terraces 35m high.  We continued west to Marokopa, then over the hill to Kiritehere Beach where we investigated the fossils in the rocks at the southern end.  We drove south to Awakino along the western side of Whareorino Forest which we vowed to return to explore at a future date.  One of the highlights was the surprise discovery of Waikawau Beach.  In 1911 three men with pick axes and shovels dug a tunnel through the standstone cliff to allow stock access.  It is the only publicly accessibly part of the coast between Marokopa and Awakino, which are almost 60 km apart by road.  The beach is isolated and beautiful, completely enclosed by cliffs, and definitely a place worth a re-visit in summer.  During the 2012/13 summer we made it up to every hut on Mt Taranaki so now we are exploring the tracks which go around.  Two weeks ago we attempted the track between the Stratford Plateau and the North Egmont Visitor Centre.  Our first stop was at the Manganui Ski Field where the boys had fun sliding in the snow on plastic boards we had carried up.  The track to North Egmont is a gradual climb, interspersed with climbs up and down ridges.  It reaches the tussock layer and goes around to meet Tahurangi Lodge.  The track was over knee deep in snow in places, and in others iced over.  Once we got into the tussock layer it was not well marked, and cloud rolled in.  It was hard going.  We got over 90% of the way there and realised we couldn’t get around the last bluff to the hut as it was too steep and slippery so we had to turn back.  It was a wake-up call for us.  Although we had sufficient warm and wet weather gear, food and water, we hadn’t told anyone where we were going, and we didn’t have crampons for our boots or an ice axe.  We also hand not checked the condition of the track prior to leaving.  Many times we have commented on the stupidity of people rescued off our mountain, but this time we had put ourselves at risk.  We were lucky to get off the mountain safe and unhurt.  It was a lesson learnt.

Happy Birthday to my niece Sacha and my good friend Dianne.