“I came to Lismore about eleven years ago. I’ve been in the same house the whole time. I purchased this house as soon as I looked off the back deck. The view is incredible. It didn’t really matter what the house was like, I loved the out doors. Originally I came here for work on a short contract but as soon as I arrived I stayed. I love it here.
I was born in coastal country, lived in the city, travelled all over the world. Actually when I was little we had a pool. I spent a lot of time sitting at the bottom of the pool blowing bubbles (on purpose) and my mum was like…mmm, I think we need to take you to learn to swim so I don’t have to sit out here for hours watching you. She took me to learn to swim and found out fairly rapidly that I had some talent for swimming. I went on to do lots of touring and travelling overseas and that’s my world ranking in Butterfly (pointing to certificate). I had a couple of world rankings. One in 200m Butterfly and one in 100m Butterfly in Opens and also for my age group. They are Top 20 rankings. I got to travel the world. One of my first trips was to Germany to swim in the Solar Cup. Myself and five other young Australians went over and we won the Cup. We travelled all through Europe and that was amazing but also gave me the travel bug which never left. It’s an expensive hobby but so worth it as it creates a very well rounded world view and it sparks curiosity.
I came from a really physical world where physical performance was measured and rewarded and then I got an injury 6 weeks before the Barcelona Olympics so that was the end of that. The universe had other plans. After I recovered I found my mojo was kinda gone and I didn’t really have the support structures to help me get through that physically and emotionally. I retired at 18, finished high school and went to work, studied, travelled, lived overseas for a year, came back and bought a house, got married and had kids.
I didn’t realise I wanted kids till I had a miscarriage and then I knew I wanted a child. I have three. My eldest son Sam has Cerebral Palsy. He is just about to turn fifteen. He had a stroke when he was born so it affects his leg and his arm on his right side. He has just done a stand up comedy piece at the Byron Comedy Festival. He is hilarious. We went to China for two weeks together to celebrate his 15th birthday and Christmas for the next ten years (laughs). My second son Ashton has a rare non hereditary genetic condition called Atypical Rett Syndrome. It normally only occurs in females so male babies generally don’t survive past two. Ashton is just about to turn thirteen. He is the second person in the world diagnosed so having a prognosis is really difficult. It is caused by spontaneous deletion or mutation. It can happen to anyone. My daughter Eliza is seven and she’s very spirited, emotional and dramatic (laughs). When Ash was little he had eight surgeries before he turned one so quite traumatic, lots of time in hospital. He uses a wheelchair for mobility. He can’t stand, he can crawl and can reach for objects though he has no safety awareness. He’s non verbal but he communicates with gestures and an iPad. He really is…and this is not just his mum saying it because I’m biased but he is joy and love personified. He is an absolutely gorgeous human being. His soul is amazing. He goes to school here in Lismore at Wilson Park. He loves going to school every day.
I think one of the hardest things for me to witness and also one of the most beautiful is Ashtons love of sport, particularly football. He’ll sit under the TV on his bottom with his legs out and he’ll run and pant. We actually have to turn the TV off for him to have a break because he gets so hot and sweaty. He feels like he’s running. We play Soccer on our knees with a bunch of socks pulled together ion a ball. He laughs and his siblings join in. Woody the dog is blind, Daisy dog is a rescue so she’s a bit emotionally challenged. It’s kind of like everyone in our house has something, diagnosed or not. Actually my daughter gets a bit jealous sometimes because she doesn’t have the special shoes that her brothers have. She’s like…Where’s mine? (laughs) She’s good fun!
Ashtons deletion of Chromosome 14 connects us with other people in the world where they have things missing on Chromosome 14 as well. Because it’s rare everything that affects Chromosome 14 is rolled into the one foundation which is called International Ring 14 and they are based in Italy so every couple of years I have to go to Italy for a genetics conference..so tough(laughs). It’s in the Pipeline to start a support group for that foundation here in Australia, I just need more hours in my day. I just finished my Masters 3 weeks ago in Applied Project Management. I work from home but I’m also working as a support co-ordinator during the week to help participants in the NDIS manage their plans and connect to the services in the community. Having a disability doesn’t close doors. It can actually open doors and can take you on an adventure that you never thought possible. Ashton turned five on the top of the Spanish steps in Rome. We travelled through Tuscany and went to a special camp for all access, all abilities and that really stayed with me. I can’t build an entire camp but I have a house and I can do something like that here.
He does lots of things that other kids do but as he got older there was lots of stuff he didn’t get to do or the invitations were fewer, especially to birthday parties and while his brother and sister go to sleep overs, he never gets invited. I remember one of the trips I did when I was swimming was to Darwin and we were billeted out to different families. I was billeted to a family from India and being a kid from coastal country NSW I hadn’t had a lot of exposure to that culture. I thought it was amazing but overwhelming at the same time. In that situation I had to learn to say I would prefer fruit and toast for breakfast not last nights curry as I had to be mindful that I had to swim and perform. I was able to articulate that but he doesn’t get the opportunity to learn those things where he’s safe and not too uncomfortable. So I thought, there’s other kids out there that don’t go to birthday parties or sleepovers so I’m going to do that here.
It’s a generous size home. Everyone has their own space and it’s filled with gratitude and love, feelings of belonging, rather than stuff. Sure, there’s toys and heaps to do but it’s really about hanging out with each other. That’s something that also gets missed in modern times. People with disability usually have routined, structured lives and sometimes they don’t want to. The idea is young people just come here and hang out. I renovated the granny flat and made it fully accessible like the rest of the house. We have an elevator and the bathrooms are fully accessible. We made sure the garden is too with raised garden beds and concrete paths for wheel chairs. You can go anywhere you want really. We have additional safety features throughout the house and there is a carers space for someone to sleep separate but close by to the young persons space. There’s a kitchen so they can retreat down there for quiet time or they can come up and be involved with the family. We cook together and we eat together at this large table. We have music on. Last night we played charades and we have a fire pit and pizza oven outside where we sit under the fairy lights and play games or toast marshmallows. We might sit down and watch a movie. There is space for at least 10 people. We can sleep four at once at the moment. We do all levels of care. It’s the higher needs people that find it hard to find somewhere to hang out and that’s what the issue is with Ash…One is there’s somewhere to go and two, do I trust where he’s going to go? We looked around and couldn’t find anywhere so it’s the first of it’s kind and pretty exciting that it’s here in the Northern Rivers. It’s called ‘Just Like Home.’
This community is amazing to be a part of. I ran for local government for Council many years ago. You can do anything in the Northern Rivers and you meet so many amazing people and those connections last a lifetime. I knew as soon as I came here that I wasn’t leaving. I lived in Coogee and Randwick and as soon as I came here it was friendly, I fitted in, it’s an hour to the Gold Coast, I can travel anywhere, great Doctors and services but it was the community, just amazing. It felt like home.”