“All of a sudden she went downhill. She woke up in the middle of the night screaming the worst scream with the most acute pain. Beth has a high pain threshold but I’ve never seen pain like this. We rushed her to Lismore Base in an ambulance and they tried to give her an MRI but the pain was too intense. They flew her down to Westmead Children’s Hospital where they put her under a general anaesthetic so they could give her an MRI. While she was under they found that basically her head had fallen off her spine.
They needed to stabilise it so while she was under they put her in a halo traction which is a metal rim that goes around your head and they actually screw it into the skull. At the moment that is attached to a vest around her chest to keep it stable. They wanted to perform that while Beth was still under rather than wake her up, remove the breathing tube, etc., so I had to sign the consent for her to have that done. It was so awful when she woke up. About 12 hours later her whole right side of her body was paralysed. She was already a bit numb which they originally thought was just swelling. They rushed her into surgery again where they performed 3 surgeries. They decompressed it again, fused it all together with metal so now she has lost motion in her neck. They tried again and when she woke up she’d lost all movement in her body. That was 2 weeks ago. A tiny bit of movement has come back in her left side. Her right side just had a tiny movement in a finger. They said not to even expect weekly changes. They don’t know what will come back.
She started Yr 7 at Nimbin because I’d heard good things about it and it was a small school. There was no bullying and the kids are quite quirky. I couldn’t rate it high enough. She’s had a normal high school experience there. A lot of the kids had come from the Steiner School out at Blue Knob and they’re just beautiful kids. Beth is 17 and supposed to be sitting her HSC this year. I was just so relieved that she’d carved out this normal teenage life for herself. I mean you’ve seen her, she’s so funky and she’s got such good taste in clothes. She’s spunky and gorgeous but for someone who’s had such limited mobility in her legs to then lose her arms……
We’ve been here at Westmead for almost 3 weeks now. I think we’ll be here for months and months. She doesn’t have any control over her bodily functions now so it’s just…. So much. She was independent before. I never thought she would get to that point of independence but she would go partying with her friends. She has such good friends. They helped her with her chair and she would go for weekends to her mates.
I work here in Lismore for Sprung which is a dance troupe for people with intellectual and physical disabilities. I have been performing my whole life and I guess just from being a mum of a person that has a disability, I’m a really big disability activist. That job came up with Sprung and I don’t think there’s any other job in the world that I’m more suited too. Also, because I’m not good at sitting still. Nothing with Sprung is ever the same, so many changing emotions and I get to dance and be joyful everyday I go to work. I had an artist friend say to me, Why are you so happy all the time? I don’t wake up every morning happy. I have heaps of shit and I find joy is like the ultimate resistance for a world that’s kind of f#cked up. I’ve kind of built my life in that way. Since I’ve been down here I’ve had so many messages from my dancers at Sprung. They have such a huge capacity for empathy. I teach dance and physical theatre. There’s also a professional level so I’m assistant producer for their new show that’s going on at Norpa. Luckily I had done most of the work before I came down here. I manage their social media so I can still do that while I’m bedside. I teach 2 online classes with the Auslan signing choir and I teach an online dance party.
I think that the 17 years that have come before have built Beth up to be so resilient. She’s coping ridiculously well for someone in this position. Full credit to her. She can still eat and taste. She requested lamb shanks so I slow cooked them here at the hospital for 24 hours. They were amazing. I decided I am going to cook her all the things she loved the most in her childhood. It’s one way I can bring comfort.
Yesterday we got a care package from Lismore. My friend Zoe sent a message out for friends to contribute. I got a Lismore lantern parade hoodie, a bunch of cool op-shop clothes, hippy socks, fancy local chocolate, Byron Chai, sand and shells from Sharpes Beach, a Himalayan salt lamp and my favourite wine, adrenal tonics, vitamins, apothecary goods and more. It’s the most Lismore care package ever and it’s so good.
I have a beautiful man now and he is down here. His name is Anthony and he’s a music teacher at Richmond River. We met when I was working at Flock. It was a really long flirtation. He used to come in the mornings before work to get his coffee and donut. He’s so beautiful but he was so obtuse when it came to picking up signals. I was hardcore flirting and it took him a long time to ask me out. He has been sleeping next to Beth every night here in the hospital so I can sleep. I have a room at the Ronald McDonald House next door so when I get over there in the morning, my head is clear and I can deal with the doctors. I know her body so well. He is just divine. We’ve been together 2 years. He’s kind. That was one of the things I wrote down after that 2 years of being alone, the top thing was I want to date someone who’s kind. It’s really hard to work out how to be attracted to kind when you’ve always been attracted to the bad boys. Kind is just everything.”
‘If you can help Katie and Beth please donate. They have a very long road ahead so every little bit helps.
I always take my own photographs but Katie and Beth are in Sydney. I loved this photo so much even though it’s a few years old. Credit to Unicorn Studios Photography.’
They needed to stabilise it so while she was under they put her in a halo traction which is a metal rim that goes around your head and they actually screw it into the skull. At the moment that is attached to a vest around her chest to keep it stable. They wanted to perform that while Beth was still under rather than wake her up, remove the breathing tube, etc., so I had to sign the consent for her to have that done. It was so awful when she woke up. About 12 hours later her whole right side of her body was paralysed. She was already a bit numb which they originally thought was just swelling. They rushed her into surgery again where they performed 3 surgeries. They decompressed it again, fused it all together with metal so now she has lost motion in her neck. They tried again and when she woke up she’d lost all movement in her body. That was 2 weeks ago. A tiny bit of movement has come back in her left side. Her right side just had a tiny movement in a finger. They said not to even expect weekly changes. They don’t know what will come back.
She started Yr 7 at Nimbin because I’d heard good things about it and it was a small school. There was no bullying and the kids are quite quirky. I couldn’t rate it high enough. She’s had a normal high school experience there. A lot of the kids had come from the Steiner School out at Blue Knob and they’re just beautiful kids. Beth is 17 and supposed to be sitting her HSC this year. I was just so relieved that she’d carved out this normal teenage life for herself. I mean you’ve seen her, she’s so funky and she’s got such good taste in clothes. She’s spunky and gorgeous but for someone who’s had such limited mobility in her legs to then lose her arms……
We’ve been here at Westmead for almost 3 weeks now. I think we’ll be here for months and months. She doesn’t have any control over her bodily functions now so it’s just…. So much. She was independent before. I never thought she would get to that point of independence but she would go partying with her friends. She has such good friends. They helped her with her chair and she would go for weekends to her mates.
I work here in Lismore for Sprung which is a dance troupe for people with intellectual and physical disabilities. I have been performing my whole life and I guess just from being a mum of a person that has a disability, I’m a really big disability activist. That job came up with Sprung and I don’t think there’s any other job in the world that I’m more suited too. Also, because I’m not good at sitting still. Nothing with Sprung is ever the same, so many changing emotions and I get to dance and be joyful everyday I go to work. I had an artist friend say to me, Why are you so happy all the time? I don’t wake up every morning happy. I have heaps of shit and I find joy is like the ultimate resistance for a world that’s kind of f#cked up. I’ve kind of built my life in that way. Since I’ve been down here I’ve had so many messages from my dancers at Sprung. They have such a huge capacity for empathy. I teach dance and physical theatre. There’s also a professional level so I’m assistant producer for their new show that’s going on at Norpa. Luckily I had done most of the work before I came down here. I manage their social media so I can still do that while I’m bedside. I teach 2 online classes with the Auslan signing choir and I teach an online dance party.
I think that the 17 years that have come before have built Beth up to be so resilient. She’s coping ridiculously well for someone in this position. Full credit to her. She can still eat and taste. She requested lamb shanks so I slow cooked them here at the hospital for 24 hours. They were amazing. I decided I am going to cook her all the things she loved the most in her childhood. It’s one way I can bring comfort.
Yesterday we got a care package from Lismore. My friend Zoe sent a message out for friends to contribute. I got a Lismore lantern parade hoodie, a bunch of cool op-shop clothes, hippy socks, fancy local chocolate, Byron Chai, sand and shells from Sharpes Beach, a Himalayan salt lamp and my favourite wine, adrenal tonics, vitamins, apothecary goods and more. It’s the most Lismore care package ever and it’s so good.
I have a beautiful man now and he is down here. His name is Anthony and he’s a music teacher at Richmond River. We met when I was working at Flock. It was a really long flirtation. He used to come in the mornings before work to get his coffee and donut. He’s so beautiful but he was so obtuse when it came to picking up signals. I was hardcore flirting and it took him a long time to ask me out. He has been sleeping next to Beth every night here in the hospital so I can sleep. I have a room at the Ronald McDonald House next door so when I get over there in the morning, my head is clear and I can deal with the doctors. I know her body so well. He is just divine. We’ve been together 2 years. He’s kind. That was one of the things I wrote down after that 2 years of being alone, the top thing was I want to date someone who’s kind. It’s really hard to work out how to be attracted to kind when you’ve always been attracted to the bad boys. Kind is just everything.”
‘If you can help Katie and Beth please donate. They have a very long road ahead so every little bit helps.
I always take my own photographs but Katie and Beth are in Sydney. I loved this photo so much even though it’s a few years old. Credit to Unicorn Studios Photography.’