“I can see from his reaction that as soon as she comes in he knows she’s here for music. He hears the wheels on her case; we call it the Magic Case!” says Toni. Her 11-year-old son Joe receives weekly visits from Noah’s Ark’s Music Therapist, Kirsty Ormston, who arrives with her case full of instruments ready to make some noise!
Joe has experienced multiple health problems throughout his short life. He was born prematurely with a rare syndrome called Cardiofaciocutaneous Syndrome (CFC Syndrome), as well as a hole in the heart and respiratory problems. Then, at ten months, Joe suffered a seizure, which led to brain damage. He was never expected to live beyond his first birthday and on more than one occasion doctors advised switching off his life support, but Joe has defied all predictions. According to Toni, “I feel like he’s a kind of Mr Invincible! He’s overcome so much.”
For Joe and his mum, the Thursday visits have been life-changing. “Before Kirsty was on board, I wasn’t really giving Joe choices,” says Toni. “When I saw Kirsty letting him choose between the tambourine and the shaker, Joe seemed to look in one direction. I was watching Kirsty and learning from her.
“I got used to seeing a list of things Joe can’t do, but no one had focused on what he can do, which is smile, communicate through music and make choices. I saw it with my own eyes, when I saw him with Kirsty. So, we’ve started doing it with him now, even down to which cake he wants to make – we tell him ‘Joe, go for the chocolate mix!’”
It’s clear that Joe loves music but his weak immune system means going out and about to groups has risks. Plus, car journeys are unsettling, so the simple act of getting to a venue means that by the time Joe is ready to take part, the activity is just about over. Says Toni: “Kirsty is the first therapist we’ve had at home and it’s exactly what we needed.
“Joe went to school for four years but school didn’t seem to be working out so I home-school him now. That’s why it’s so good to have Kirsty; because it’s just me doing everything – I’m physio, I’m nurse, I’m mum, I’m social worker, I’m teacher. It’s nice to have someone with a different voice and different ideas who can communicate with Joe in a completely different way.
“Kirsty is probably the only person who isn’t a member of the family who has contact with Joe. It’s great to see him building a relationship like he has with Kirsty over such a short period of time.”
When hospice care was first suggested to Toni she was hesitant: “When Joe was ten-months-old the doctors said ‘we’re referring you to a hospice’ and left brochures on the table. I didn’t even look at them. As far as I was aware, a hospice was a place a child went to spend their final few days.”
But a conversation with another mum got her thinking. “She opened my eyes about hospice care not being what I had imagined at all. She made me think I should give it a chance.
“With Noah’s Ark, I know I can relax, let my guard down a little bit because I’m in a safe environment.”
And while Toni relishes the benefits of having Kirsty come to Joe, she is looking forward to seeing him spend time in the new hospice building, “because of the social aspect really, as Joe spends so much time at home. It’ll be nice that he’ll already know Kirsty and the hospice will have more space and equipment; space for music therapy groups. That would be new for me, to see Joe with another child, with music, to see how they bounce off one another.”
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