How do you tell your kids bad news?
There is, of course, no magic bullet or right answer to that question. But the question was one that worried my wife Kate and I.
In 2009, aged 43, I was diagnosed with early onset Parkinson's Disease (PD). At that time we had just started our family and had an 11-month-old, Pearl (who's now four), and her four-year-old sister, Lily (now seven).
Parkinson's is a degenerative, neurological disorder with no known cure. One of the idiosyncrasies of PD is no two people have the same combination of the motor symptoms (tremor, facial masking, slurred speech, etc) or the many non-motor symptoms (fatigue, pain, depression, cognition, memory, motivation etc).
What is not in question, though, is that the lack of dopamine affects both physical movement and emotional life and that many people suffer from depression as they deal with - what neurologist Barry Snow calls - "a very tough disease".
As we recovered from the shock of the diagnosis one of the many issues we faced was "how do we tell the kids?".
It was difficult enough to tell friends and family, let alone to figure out how to break it down and make it accessible for the children.
The first thing we did was to make it normal. We invented a persona called 'Parky' and when I was struggling to tie the girls shoe-laces or if I was just tremoring badly we'd all say "uh-oh there's Parky!".
I also wrote a poem in 2010 called Smaller. The defining message being that whilst Parkinson's has forever changed me and my body, I was still my own man. The poem became a starting point for deepening this conversation with my circle of friends and children.
Initially, I investigated publishing Smaller as an illustrated book. And it was while investigating that option that I was introduced to renowned children's illustrator Ross Kinnaird. Ross very kindly drafted some images to match the words in 2011. But we went no further.
I then put the poem on Facebook and received heart-warming feedback from friends.
Subsequently I heard about the Worlds Parkinson's Congress (in Montreal, October 2013) video competition and I knew I'd found a way to deepen the understanding among those with Parky and their friends and family.
We got a team together and story-boarded the poem. In doing that I mooted using Lily as the voice, introducing and reading the poem. Everyone seemed to like that idea (especially Lily) and we scripted it accordingly.
Ross Kinnaird drew all the animation and friend and designer David Craggs created the finished feature. Ross, David and the team at Franklin Road Studios all offered their time and creativity in making Smaller free of charge.
The last piece of the jigsaw puzzle was the audio track. Lily had been practising for a week (helped by Pearl) but going into Franklin Road Studios was a big adventure. Involving Lily in the audio production meant she engaged more with my Parkinson's in a creative and fun way.
So, I don't know how to tell kids bad news. But making it simple and engaging them in a project sure helped us.
Read my article on stuff.co.nz
