Rory Gardiner's Webpage

24, Dec, 2009

Wednesday 23rd December 2009

We want to wish everyone who has supported Rory, and our family, in 2009 a Merry Christmas and a happy and healthy 2010. Words cannot express how much your support has meant to us, and thank-you seems to fall way short. We feel you around us every day, and we are grateful for your love, strength and generosity. We would have struggled without you. So over the net we are sending our love and hope you can feel our joy because Rory is still with us. xoxo

We have made it to Nana and Poppa Honnor's house in New Plymouth! We left at 4am this morning and arrived at lunch time, a trip of a little over eight hours. We were fortunate the road was relatively quiet, and the boys travel well. They have made the trip many times. They pass the time playing their Nintendo's, reading, drawing, listening to music, and looking out the window. We stopped for breakfast in Pokeno, and morning tea at a strawberry garden at Piopio which has the best berry soft serve icecreams. It was a clear day as we approached the Naki and you could see the mountain from Mokau up the coast. Poppa and Uncle Guy arrived home at lunch time to say hello. We walked around the corner to the Hospice shop to pick up Nana who was volunteering. Rory walked almost the whole way holding Sean and I's hands. Unfortunately there were some tears in the Hospice shop when Rory was separated from Sam and I by accident. Rory thought he had been left behind and was frightened. I had to hug him tight for a long time. It has taken us all afternoon to unpack while the boys have played.

Yesterday (Tuesday) Sean took Rory to the Child Health Clinic so Dr Ollie could check the Hickman line wound and dressing. It is healing well. The steri strips were replaced by Nurse Layoni. Hopefully the steri strips can come off next week and he will be able to have a swim. The visit to the dental nurse to get two small fillings in his molars was a disaster. Rory wasn't happy about having the injection in his mouth and the dental nurse lost her nerve and wouldn't continue as she didn't want to hurt him. This made me angry as Rory now has to wait for an appointment in the New Year, and I will have to psych him into the treatment. It makes me angry when people look at Rory and assume he can't handle what is occurring in his life so allow him to opt out. The more he is treated like a normal boy the stronger he will be. Instead of feeling like he had accomplished something, like he was brave and grown up, he came away feeling small, angry and afraid. Sean and Rory called into the Children's Ward to get some beads of courage from Nurse Rai. We spent the afternoon packing the car and trailer, and then enjoyed our last dinner for a while with Grannie and Grandad Gardiner. The boys are going to miss them very much. It feels strange being away.

On Monday Rory and I dropped Sam at our friends the Millers so Sam could stay the night with Lewis. It was a very quiet day. Rory was afraid to go to sleep at night without Sam in the room. I sat with him for a while, then did some jobs in the adjacent room so he could hear me moving around while he fell asleep. It is hard forcing him to tough it out on his own when I all I want to do is cuddle him and block out the world, but doing so makes him stronger and more confident within himself. Each small step is a step towards finding himself.