Journey

The heart of science is measurement (Erik Brynjolfsson).

I am an Ecologist, so a scientist.  I continually measure, analyse and evaluate what I do, at work and within our family, to inform future direction.  This is so I, and the teams I work within, can achieve better results.  I am not afraid to change things, even if they have been in place for a long time.  This week my ability to measure was challenged.  On Thursday afternoon we completed a back-dated Needs Assessment for Rory with Fiona from ACC.  This was to measure the additional input Sean and I have had to provide, above what is considered ‘normal parenting’, for Rory as a result of his impairments.  To prepare I went back through the diaries I have written since mid-2017 to summarise what has happened to Rory and what support we have provided.  The synopsis felt clinical, simple and two dimensional but in reality it was the opposite.  I struggled to demonstrate to ACC the complexity and enormity of what was involved.  It wasn’t just the tasks we performed.  As Rory’s primary carer I poured myself into his life and did my utmost to ensure he received the best of what was available.  How do we measure this value-add and what it has cost?  Maybe we can’t.  Maybe we don’t need to.  Being Rory’s mother has enriched my life in ways I cannot begin to describe.  I only have to look at my son to feel pride.  I know he has a good life in spite of everything.  As long as I am on this journey with Rory I will continue to fight for him.  That is what good mothers do. 

Rory’s weekly programme continues thanks to the wonderful people who support him; Phil, Caleb, Tash, Peter, Deanne and Sean.  The ACC appointments are interspersed within our week.  I have had a phone call with Jes to discuss our progress and Sheila visited to share tips for Rory’s speech.  He needs to work on using a strong voice with an open mouth so he can be heard and understood.