Kane’s story: Pete’s music therapy perspective

“Kane was very young when I first met him. Most young people with mitochondrial disease are in a very low state of consciousness and when I first met Kane, that was what struck me most, his low energy. He was also prone to a lot of seizure activity. I remember Kerri telling me in one day he’d had between 20 and 30 seizures. He didn’t interact much, but music was something that he did respond to. He had little in the way of intentional movement, so the type of work I did with him I like to think of as a music cuddle. You create a beautiful soundscape for them. 

“There was no knowing exactly what Kane could understand, and as a therapist, we have to embrace the not-knowing and watch very carefully for micro-signs. Kane usually had his eyes closed, but when he heard music he might move his head slightly or open his eyes and track the movement of a sound. We worked out quite early on that music seemed to mitigate some of his seizure activity, so Kerri and Craig often had music playing for him. We know that music activates more parts of the brain than any other activity - we can see the evidence of this during functional MRI scans. Some researchers would argue that this leads to better synaptic connection, better ability to communicate, all sorts of things. I certainly felt that there was something happening on a neurological and physiological level that was really regulating for him, and I do like to think music therapy contributed to a better quality of life for Kane.

“So many people look at a child like Kane and they immediately see what they can’t do, and I’m the opposite of that. I’m only interested in what he can do and finding out what we can do together. So much of the work is about finding meaningful ways of connecting, and letting the children know that they’re valued, seen, recognised and heard. It’s about helping them have their own voice, so you have to find out what they can do. Maybe they only have movement in their fingers, for example, so perhaps they can use little bells to find their voice.

“Later, I did sessions with Kane and his family when he was at Demelza for end of life. Kerry and Craig had a family song for Kane, which was ‘You are my sunshine’. Whenever I go into an end of life session, I will always talk to the family to check whether there are things they want me to do or not do. And that was one of the first things I asked if they wanted – it was such a special song to them. When I sang it, it elicited a lot of tears, a lot of emotion, but I felt that the song was cathartic for them. 

“Therapists often talk about putting our emotions, those strong, jagged emotions, into something safe, and when you have a family song like that that’s what we’re doing - allowing the song to be the container. Humans have a tendency to do this naturally, because music seems to be the perfect vessel for emotions. We have music, rhythm and melody before we have words - the first thing we hear in the womb is our mum’s voice and heartbeat.

“That moment, when I sang ‘You are my sunshine’, was hard. As a therapist, it’s a balancing act of allowing yourself be part of what’s going on but not being engulfed by it. It’s difficult. Particularly in those moments of high emotion - I’m usually singing and the voice is where you first notice emotion, you can feel your voice catch, but you have to be focused and remember you are there as a professional. If I break down at this moment in time, that’s not supporting this family. My job is to hold that stuff somehow, as hard as that may be, and it really was hard. I saw Kane a few times when he was at end of life and we sang that song every time, and it never got any easier. There’s such depth of meaning for them as a family. Singing the words ‘don’t take my sunshine away’ in the knowledge that he was going to go away... it was difficult.

“When I’m working with young people at end of life, what’s most challenging is the family members’ responses – their grief, their anxiety, their fear. I could just see how hard it was for Kerry and Craig, and for Harley too. It can be really difficult, but what we try to do is allow the music to hold or contain these big feelings. Endings are difficult, but they’re also what make us human. Ultimately, life is about death. It is the one facet of our humanity that draws us all together. It is because we end, because we are finite, that we have love, joy, laughter, sadness, all of these things. Emotions are our signposts, our waymarkers throughout life, and it’s the way we respond to that ultimate end that defines what we are and who we are. Ending is hugely important.

“There are no adequate words which can truly express my feelings after the death of a child and, for me, this is where music comes in. It’s too much otherwise. Music can give us a place to hold all those emotions and create meaning, but I don’t ever think we’ll ever truly understand the connection between humans and music. It is uniquely human.”