1st October 2024
In support of Down Syndrome Awareness Month, we are delighted to share this Voices blog by Chris Read, a singer and songwriter. Chris shares his experiences about being the parent of a child with Down Syndrome which he has skilfully captured in his song ‘Every Atom Of You’ being released today, the first day of Down Syndrome Awareness Month.
Chris Read
Hello, my name’s Chris, I’m a singer and songwriter based in London, working mostly in film and TV music. I was invited to join the iHV SEND conference earlier this year and I’m delighted to be joining again for the annual iHV Leadership Conference on 4 December 2024.
As I said at the SEND Conference in March, my grandma was a health visitor, my mum is a midwife and my wife is a social worker, so I felt very comfortable surrounded by amazing people who have devoted their lives to serving others – and I assume lots of you reading this count among those – so thank you!
Some of my interactions with health visitors as a father have been prompted by my second child’s diagnosis of Down Syndrome. And as my wife navigated the journey of Educational Health Care Plans, physiotherapy and other provisions, I turned to what I know best to process the life change – songwriting! Perhaps less practically useful than working out how to be an effective service-using parent, but hopefully emotionally useful in some way.
My day-to-day life involves writing songs and scripts, mostly for other people’s projects, so it was both a joy and a struggle to sit down and try to capture something so personal.
The song that came out in the first few months of Theo’s life is called ‘Every Atom Of You’, because I wanted to write about him in a way that went deeper than the chromosomal difference that many people will identify him by as he grows up. The atom has always fascinated me, the beautiful mini solar system in the foundations of all living things.
The song was originally called ‘what’s so great about an easy life?’, which was prompted by the many conversations that would name Theo’s diagnosis as ‘so hard’. I suppose it’s true that it is so hard, but it’s quite a weighted truth, which doesn’t give much chance for nuance – like the way it will be a struggle to get him dressed and out of the house, but then he will smile at a stranger on the tube like they’re an old friend. Or the way that, even though we’ll be changing his nappy longer than most children, afterwards he will give a full-body-weight hug, for many minutes, to my sister as she’s sitting with us at breakfast. She later called him ‘the best hangover cure’.
“The doctor’s talking behind a furrowed brow
You would’ve thought he’d be used to this by now
I smile at him and say ‘it’s alright,
I once wanted an easy life
But that’s a bubble and you’re not the first to burst it’
Every atom of you, to me, is perfect”
That’s the most healthcare-focused line in the song – I’m trying to illustrate how good intentions can be misunderstood by furrowed brows and language like ‘I’m so sorry’ or ‘that’s so hard’. Change can be confusing in third-person, as well as for the person going through the change, and can make people project their own things onto the ‘change-ee’. I’ve found a fair amount of joy can come from assuming everyone has the best intentions in their interactions with others. It’s usually true enough to make the assumption worthwhile and, the few times that it isn’t, I can still smile and walk away.
The song is the first track on a 4-track Extended Play (EP), which comes out today, on the first day of Down Syndrome Awareness Month. I hope you enjoy it!
To hear the EP – click here.
I’m looking forward to seeing as many of you as possible at the iHV Leadership Conference on 4 December 2024, where I am excited to be performing again. This conference is all about driving change and I may have a little star guest performer of my own – but there will be no more spoilers at this stage!
