Journey

School holidays are great.  They provide us with an opportunity to have wonderful mini-holidays as a family.  The cost is a second shorter week where I play catch up at home and at work.  This week Rory and Colt and have been shuttled between Natasha, Rob, my good friend Shelley and Nana Honnor.  Working under pressure creates additional challenges for Rory and I.  He is incredibly slow, whereas I am operating at high speed.  He needs a lot of help and support which is a continuous disruption and demanding of me.  It is hard for Rory to have to rely on others to achieve some independence “Its not my fault I have disabilities and can’t do things for myself”.  It is hard for me to have a 19 year old son who often functions like a toddler.  I feel guilty for the times when I have had enough.  We both get irritable, frustrated and suffocated.  Rory’s independence will always be a continuous challenge.  He wants to do more for himself, and we want this for him, but the risk of injury is high.  The outcome is potentially significant i.e. broken bones, head injury, hospitalisation.  The level of care and support Rory needs could escalate.  It is a horror we don’t want to contemplate for Rory or ourselves in future. 

Rory is looking forward to going back to school tomorrow to show everyone his Ta Moko and share what he did over the holidays.  Plus he says “I have done everything I can at home”.  Colt would rather stay on holiday!

Rory had an appointment with Orthopaedic Ankle Surgeon Dr Pandit this week.  The MRI of his ankle was fine but 10 years of impaired balance and co-ordination, coupled with the Cerebellar Ataxia, has resulted in flat feet.  The arches of his feet have collapsed so his entire foot is coming into contact with the ground.  It creates additional strain in his ankles and knees, resulting in injury when he trips or falls.  Dr Pandit is referring Rory to a specialist who can build improved orthotics for him. 

Thank you to Sam and Caitlyn for the voucher so Sean and I could have a soak and a massage at the Taranaki Thermal Spa.  Thank you to Nana Honnor for keeping an eye on Rory and Colt .