“ I grew up in Port Stephens, left home and school when I was 16. I was a really good student but I was diagnosed with ADHD as an adult which explains a lot of things. I was just bored. I travelled around Australia, worked down the snow and did a lot of theatre and activist stuff. I was a bit of a wild, crazy child. I moved out to Jiggi with my mum who had separated from my dad at the time. They had this really on and off relationship. Mum had bought a farm out at Jiggi and I moved with her when I was 19. I helped her set up the farm and that was my first experience of Lismore and Nimbin.
I went backpacking overseas on a working holiday in Ireland where I lived for a few years. Randomly I worked for the Irish supplier of Birkenstock shoes. The shop was a hippy shop called Woodstock and it was basically like Lismore in Ireland.
I travelled around Europe and I fell pregnant to an English lad I was seeing at the time. He was a Musician. I’ve always had a thing for emotionally unavailable musicians (laughs). He was lovely, he proposed to me and wanted me to stay but I freaked out. The weird thing was I never saw any children out in the street. It rained a lot and not seeing kids playing was such a strange lifestyle in comparison to what our childhoods were like here in Australia. I grew up on a farm when I was really little running around in my knickers. I thought ok, I’m going to go home and have this baby with the support of Mum and Dad who were back together again.
My plan was to have my baby, strap her on my back and keep travelling the world. I came home when I was 3 1/2 months pregnant and didn’t tell anyone except my parents and they were beautiful. They have 13 grandchildren between them. My dad starting converting an old dairy on the farm into a house for us.
I went for my first pregnancy ultrasound and the person scanning called in another person and then their supervisor and they kept measuring. They knew the measurements didn’t add up so they sent me to a specialist in Brisbane. He was this old dude sitting at a desk surrounded by books. I was so hippy at the time. The specialist misdiagnosed my baby with a condition called Achondroplasia which is like Dwarfism, He actually took a book off his shelf and showed me a picture of a sausage dog and he basically said this is what your baby will look like. He was really condescending and it was such a horrible experience. So that’s what I thought would happen. I had nightmares about it.
I came back and luckily I had supportive parents which helped a lot. I found a Paediatrician, Dr Ingall who I saw before I had my baby. My daughter Beth was born at Lismore Base Hospital when I was 21. They actually broke her bones delivering her. They didn’t know then that she had brittle bones. Luckily she was breech so I had a Caesarian which wasn’t my plan. I had this dream of having a natural home birth with whale sounds (laughs) but anyway, she may not have survived if she was born naturally.
Dr Ingall diagnosed her not long after she was born with Osteogenesis Imperfecta which is a brittle bone disability. Her bones break so easily. I’d never heard of it, there was not really any internet. They sent me home with Beth and a one page fax sheet on what the condition was and what I could and couldn’t do. Basically, I couldn’t pick her up under her arms. They used to call them cotton wool babies because they are so fragile. When she was born she had her tiny arm in a sling. She broke her arm, her collarbone and a rib just being born by Caesarian. She continued to break bones constantly. I didn’t know what I could and couldn’t do. I broke her arm just putting her into a little Bonds onesie. Femurs were the worst, thigh bones…..so painful. The only way you can set femurs is in a full body cast or in traction so in her toddler years we spent 6 weeks at a time living in hospital. Lismore summers in full body casts, so full on. I still see those nurses who are almost like my second family.
I decided I wanted to do a degree in Environmental Science so I was living at the hospital and studying. Half way through my degree I wanted to go back to acting. I have such a passion for the environment but I have such an artistic side so I’ve been a bit tied between. I finished my degree but it took me 10 years. I started a company where I taught Environmental Science through the arts which I did for quite a while. I work solely in the arts now.
During the course of Beth’s life she has broken hundreds of bones. When she was really young, everytime she had pain it was a broken bone. It would be a different kind of cry and we’d end up in emergency. A lot of times they can’t see the break because her bones don’t have the density and they lack collagen. When we fall our bones can sort of bend to a certain point but Beths are so brittle, she basically has a break or fracture all the time.
Beth is so incredible. She’s always been highly intelligent and I guess from being in hospital so much, she has a lot of patience. I taught her to read really young so she now speed reads. She reads a book, slams it down…next! She’s always been an amazing writer. I lot of people think I’m extroverted but I’m really not. I need my alone time so Beth and I are very similar in that way. She’s quite afraid of people now as she’s had a lot of people fall on her just because she’s so low in her chair and people don’t notice her. People can be quite condescending in the way they talk to her. A lot of people see someone in a wheel chair and think they have a mental disability. Beth is smarter than most of us. She was an extremely happy kid even through all this.
We moved down to the South Coast with my partner at the time and I worked in the Royal National Park teaching environmental arts. Beth went to a really small school and the community was beautiful there. She’s always had really good friends. It’s something I always worried about for her but she’s never had a problem and she’s never been bullied. I think her personality has really helped her rise above that. Beth loves swimming and snorkelling. Water is her freedom. There was a point in time where she walked a little bit but her legs just kept breaking and she made the decision as she got older that she didn’t want to do it anymore. She has rods all up her legs and they did spinal fusion on her spine because she has Scoliosis as well so it was breaking at the point where it was most bowed. She’s had so many operations.
When she was in Year 5 they found this extra condition where her spine was slowly moving up into her skull which was putting pressure on her brain. They have been monitoring that and we knew it would get to a point where they would have to operate. That was supposed to happen in April this year but it got postponed because of Covid so they did it in August. What they did was go in through her nose, take away everything in there and they shaved down the top part of the spine to release that pressure. She was already getting really bad headaches and if left it affects sight and movement so they try and stop it before it gets to that point. They sent us home to try and recover from that and she was slowly getting better.”
I went backpacking overseas on a working holiday in Ireland where I lived for a few years. Randomly I worked for the Irish supplier of Birkenstock shoes. The shop was a hippy shop called Woodstock and it was basically like Lismore in Ireland.
I travelled around Europe and I fell pregnant to an English lad I was seeing at the time. He was a Musician. I’ve always had a thing for emotionally unavailable musicians (laughs). He was lovely, he proposed to me and wanted me to stay but I freaked out. The weird thing was I never saw any children out in the street. It rained a lot and not seeing kids playing was such a strange lifestyle in comparison to what our childhoods were like here in Australia. I grew up on a farm when I was really little running around in my knickers. I thought ok, I’m going to go home and have this baby with the support of Mum and Dad who were back together again.
My plan was to have my baby, strap her on my back and keep travelling the world. I came home when I was 3 1/2 months pregnant and didn’t tell anyone except my parents and they were beautiful. They have 13 grandchildren between them. My dad starting converting an old dairy on the farm into a house for us.
I went for my first pregnancy ultrasound and the person scanning called in another person and then their supervisor and they kept measuring. They knew the measurements didn’t add up so they sent me to a specialist in Brisbane. He was this old dude sitting at a desk surrounded by books. I was so hippy at the time. The specialist misdiagnosed my baby with a condition called Achondroplasia which is like Dwarfism, He actually took a book off his shelf and showed me a picture of a sausage dog and he basically said this is what your baby will look like. He was really condescending and it was such a horrible experience. So that’s what I thought would happen. I had nightmares about it.
I came back and luckily I had supportive parents which helped a lot. I found a Paediatrician, Dr Ingall who I saw before I had my baby. My daughter Beth was born at Lismore Base Hospital when I was 21. They actually broke her bones delivering her. They didn’t know then that she had brittle bones. Luckily she was breech so I had a Caesarian which wasn’t my plan. I had this dream of having a natural home birth with whale sounds (laughs) but anyway, she may not have survived if she was born naturally.
Dr Ingall diagnosed her not long after she was born with Osteogenesis Imperfecta which is a brittle bone disability. Her bones break so easily. I’d never heard of it, there was not really any internet. They sent me home with Beth and a one page fax sheet on what the condition was and what I could and couldn’t do. Basically, I couldn’t pick her up under her arms. They used to call them cotton wool babies because they are so fragile. When she was born she had her tiny arm in a sling. She broke her arm, her collarbone and a rib just being born by Caesarian. She continued to break bones constantly. I didn’t know what I could and couldn’t do. I broke her arm just putting her into a little Bonds onesie. Femurs were the worst, thigh bones…..so painful. The only way you can set femurs is in a full body cast or in traction so in her toddler years we spent 6 weeks at a time living in hospital. Lismore summers in full body casts, so full on. I still see those nurses who are almost like my second family.
I decided I wanted to do a degree in Environmental Science so I was living at the hospital and studying. Half way through my degree I wanted to go back to acting. I have such a passion for the environment but I have such an artistic side so I’ve been a bit tied between. I finished my degree but it took me 10 years. I started a company where I taught Environmental Science through the arts which I did for quite a while. I work solely in the arts now.
During the course of Beth’s life she has broken hundreds of bones. When she was really young, everytime she had pain it was a broken bone. It would be a different kind of cry and we’d end up in emergency. A lot of times they can’t see the break because her bones don’t have the density and they lack collagen. When we fall our bones can sort of bend to a certain point but Beths are so brittle, she basically has a break or fracture all the time.
Beth is so incredible. She’s always been highly intelligent and I guess from being in hospital so much, she has a lot of patience. I taught her to read really young so she now speed reads. She reads a book, slams it down…next! She’s always been an amazing writer. I lot of people think I’m extroverted but I’m really not. I need my alone time so Beth and I are very similar in that way. She’s quite afraid of people now as she’s had a lot of people fall on her just because she’s so low in her chair and people don’t notice her. People can be quite condescending in the way they talk to her. A lot of people see someone in a wheel chair and think they have a mental disability. Beth is smarter than most of us. She was an extremely happy kid even through all this.
We moved down to the South Coast with my partner at the time and I worked in the Royal National Park teaching environmental arts. Beth went to a really small school and the community was beautiful there. She’s always had really good friends. It’s something I always worried about for her but she’s never had a problem and she’s never been bullied. I think her personality has really helped her rise above that. Beth loves swimming and snorkelling. Water is her freedom. There was a point in time where she walked a little bit but her legs just kept breaking and she made the decision as she got older that she didn’t want to do it anymore. She has rods all up her legs and they did spinal fusion on her spine because she has Scoliosis as well so it was breaking at the point where it was most bowed. She’s had so many operations.
When she was in Year 5 they found this extra condition where her spine was slowly moving up into her skull which was putting pressure on her brain. They have been monitoring that and we knew it would get to a point where they would have to operate. That was supposed to happen in April this year but it got postponed because of Covid so they did it in August. What they did was go in through her nose, take away everything in there and they shaved down the top part of the spine to release that pressure. She was already getting really bad headaches and if left it affects sight and movement so they try and stop it before it gets to that point. They sent us home to try and recover from that and she was slowly getting better.”