“I call it the most heartbreakingly beautiful year of our lives” – A Mother’s Mission To Honour Her Eight Year Old’s Legacy
"One day we went to get an eye test, and seven days later Levi was having a biopsy on a tumour in his brain", Kathryn Wakelin tells us about her seven year old son. "Two weeks after that, we were told Levi would die, soon and very cruelly, from a rare and aggressive brain cancer we had never heard of. It was a very rapid and shocking introduction to a new world we wanted no part of…"
It's a cliché to call it every parent's worst nightmare, but that is the reality Kathryn and her family found themselves in. The next year saw them weather Levi's treatment and worsening condition, trying to at once savour their time together, protect their other two children from the full force of their grief, and continue to put one foot in front of the other even as their world tipped off its axis. "I call it the most heartbreakingly beautiful year of our lives", Kathryn says.
Levi's eighth birthday was his last. But his legacy lives on, not only in the beautiful memories of those who knew and loved him, but in Levi's Project, a research project run by scientists at the Children's Cancer Institute. Levi's Project aims to develop Australia's first-ever treatment program for DIPG – the rare condition that took his life. So far, Levi's Project has raised $2.6 million for DIPG research.
It's a mission that Kathryn and her family will continue to drive. We spoke to this incredible mother about Levi's story, how best to support families in grief ("'Let me know if there's anything I can do' is not helpful when you don't even know what you need", she says), and what life looks like for her family, with a piece missing.
"A life means something", Kathryn says with conviction. "His certainly has."
Tell us a little bit about your beautiful family.
My husband Ben and I have three children; Olivia, 11, Levi, forever 8, and Archie, 7. We also have two fur babies – Milo, our chocolate Labrador, and Cuddles, our Siberian kitten. We live in Sydney's Sutherland Shire.
Can you tell us about Levi?
Levi was a such a sweet and sensitive soul. He radiated gentleness, both in his personality and the things he was drawn to. He was devilishly handsome, with big brown eyes he would bat at me to get what he wanted. He was enviably athletic, one of those kids who was annoyingly good at most sports he tried, especially soccer. He adored his family and friends.
Doctors found a mass and some swelling on Levi’s brain just after he turned seven. What led up to that moment at the doctors?
There were no persistent symptoms or a prolonged period of illness, nor was there a niggling feeling that something serious was wrong. We thought we were dealing with an eye problem, and that would be the extent of it. His eyes started to go a bit funny in the preceding weeks, like he was going cross-eyed. It happened sporadically at first. Then his teacher noticed too, so we took him to get an eye test. The optometrist told us he had 20/20 vision, but she couldn't account for his eye turn, so we saw an ophthalmologist. He ordered an MRI, and that's when the mass on his brain was discovered.
How did you begin to process that information, and how did you navigate the weeks between that point and when Levi was eventually diagnosed with DIPG?
Everything happened at lightning speed. One day we went to get an eye test, and seven days later Levi was having a biopsy on a tumour in his brain. Two weeks after that, we were told Levi would die, soon and very cruelly, from a rare and aggressive brain cancer we had never heard of. It was a very rapid and shocking introduction to a new world we wanted no part of. Social workers from the hospital helped cushion the next steps, and some kind doctors helped translate foreign medical information. We had to get up to speed very quickly, but really, in those first few weeks, it was shock, despair, anxiety, sadness and stress on another level.
What were you told about his diagnosis and what was ahead for Levi?
We were told Levi had DIPG, or diffuse intrinsic pontine glioma, a brainstem brain tumour. DIPG is terminal on diagnosis. 100% fatal. There are no survivors, ever. When we walked into the oncologist's office to get the results of his biopsy, we knew Levi had a mass and some swelling on his brain. By the time we walked out, we knew our gorgeous boy, so full of life and love, had only a year to live – if we were lucky. The cancer would strip away his body's vital functions, arresting his ability to eat, talk, walk and eventually, breathe. There was nothing we could do to save him. It felt even more horrific than it sounds, as utterly unbelievable now as it was then.
What is DIPG?
DIPG is a tumour found in the pons, an area of the brain located within the brainstem. Because of its location in a critical part of the brain, surgery to remove the tumour is not possible. Sometimes even a biopsy is out of the equation. DIPG predominantly affects children, typically between the ages of 5 and 10. In Australia, up to 20 children will be diagnosed with DIPG each year. The average life expectancy of a child after they are diagnosed is nine-months. The typical treatment involves radiotherapy, which in the majority of cases will shrink the tumour, before it grows back aggressively and lethally.
What did that next year look like for your family and for Levi?
I call it the most heartbreakingly beautiful year of our lives. We lived and loved as though our world as we knew it were ending, and it was. On the one hand, we had the crippling, unavoidable reality of Levi's cancer, and on the other, we had a vibrant life which carried on, forever changed. We had a beautiful brave boy who went to school one day and treatment the next. A soccer-mad, energetic kid who could tear up the pitch with his mates, all the while undergoing experimental and invasive treatments. As a family, we travelled far and wide and had many once-in-a-lifetime experiences. We were able to make some unforgettable memories with family and friends. Not everyone gets a chance to do that. We had the highest of highs and the lowest of lows.
How did this impact your work and the logistics of everyday life - something that so often isn’t spoken about during such awful times?
When Levi was diagnosed, I was new to teaching. I spent 16 years as a journalist before earning my post-grad teaching degree. A career change might sound like a disaster at a time like this, but mine gave me flexibility and job security. I also had a supportive boss. At first I had to take three months off because we were at the hospital every day during Levi's radiotherapy. Then I worked 1 day a week for the rest of the year because we were in and out of hospital so much. In terms of practical support, we had wonderful family who stepped in to look after our other kids when we couldn't. All of this gave us the space to focus on what we needed to, but the stress we were under was intense. I remember one particular 24 hours, we spent the day in hospital with Levi getting tests, the night in hospital with Archie with severe gastro, then we were back at Levi's hospital a few hours later for the start of a new trial. Days like these became our new normal. Any sense of living an ordinary life gets thrown out the window.
Levi devastatingly lost his life just over a year after his diagnosis, and you have lived every parent’s worst nightmare. How do you even begin to pick yourself up?
There's an element of just buckling up or strapping in, because in the beginning there is little control over what comes your way. At the very start, around the time of Levi's funeral, I felt a powerful sense of purpose, as though Levi's spirit was guiding me and propelling me forward. I have no explanation for this, other than when I saw Levi suffer the way he did, something shifted inside me. You can't go back to what you were after that. Soon after that I crashed, flattened by sadness. I think the adrenaline finally left my body. Then some other dimension opens up. Survival. A little bit of madness. Things frequently did not feel real. I remember spending a good deal of time suspended somewhere between astonished disbelief and crushing realisation. I would literally stop in my tracks and think, "What the hell just happened." You get smashed by a tsunami of emotions. Sometimes it's a grief ambush, other times you can dip in and out when you need to. It continues to this day, just with a little less intensity.
You have two other children - Archie and Olivia. How were they supported during that awful last year of Levi’s life?
Having a sibling with cancer is so hard. We were at the hospital often and Levi received a lot of our time and attention because we knew we didn't have much time left with him. We tried to shield Archie and Olivia from the full extent of what was going on, which meant we couldn't be completely open about why everything was about Levi. We thought we were doing well, spreading the love as best we could, but to them it just felt unfair. Levi was always receiving a special package or visit from someone. And he got to spend so much time alone with Ben and me. Of course, that time was spent at the hospital, undergoing a barrage of tests and treatments, but kids don't see it that way. That whole year was about making memories as a family, but the focus was very much on Levi. I don't regret it because we gave him everything we could, but our children's pain continues every day.
How did you explain Levi’s condition to Archie and Olivia? And how did you explain the loss of his life?
Those conversations evolved over time. At the very beginning, we kept things general. We told them doctors had found a lump in Levi's brain, then that lump turned out to be cancer. We never told any of our kids the name of Levi's cancer, because we didn't want them or their friends googling it and finding out the outcome. As his cancer progressed, we had to duck and weave a little, teetering delicately between the truth and not wanting to smash their world to smithereens. We were told to try and instil hope, as flimsy at that sometimes seemed. "The medicine the doctors have given Levi isn't working. The doctors are trying their hardest to find new drugs which may work."
When we chose to have those conversations about death, it was like stepping off the precipice. It's difficult to convey just how harrowing it is to tell your eight-year-old that he is dying. Or to tell your daughter that her brother will soon take his last breath. No words will ever get to me the way those ones did. I revisit those conversations often, and in turn they bring me comfort and destroy me. I am changed by those terrifyingly dark words we whispered to each other into the night, and eternally thankful we went there together. It's one of the things I am most proud of.
What does life look like for you and for your family today?
We have a beautiful life, surrounded by amazing friends and family. We find joy in a lot of things, and we have two beautiful humans we still get to have and hold. We are the fortunate ones. But there's a special someone missing, and he pervades everything we do. As I like to try and explain it, he's everywhere and nowhere. In terms of the hardships we face, I want to acknowledge the pain of the siblings left behind. It's something you don't often hear about, because the things they have to wrestle with, and the impact this has on families, is unsettling. Each and every day they struggle, desperately at times, with the damage. If I could take one thing away, it would be my children's suffering.
How have you been able to move through this unimaginable grief? Have there been particular books, or people, or thoughts, that have helped you?
When you go through something as overwhelming as the death of your child, connection to people is the one thing you crave above all else, to silence the alienation that stems from having thoughts and memories and experiences that no one else does. We have many beautiful friends and family who have held our hands throughout our journey. My path would have been much lonelier and more difficult without the support they have provided. I see many therapists – psychologists, grief counsellors, trauma counsellors. If I think they can help me, I will talk to them! Being open and honest works for us. Death is not a taboo topic in our house. We have many family rituals around Levi. We visit his grave regularly, commemorate significant events, do things in his honour. We like to remember the incredible kid he was. Channelling our pain into something positive, through Levi's Project, has also helped.
Tell us about Levi’s Project.
Levi's Project is a world-leading research program by scientists at Children's Cancer Institute which aims to develop Australia's first-ever treatment program for DIPG. It was born out of a sense of helplessness while Levi was sick. This disease is so horrendous, and the treatment and survival rates for DIPG have not changed in 40 years. We focused on our family while he was alive, but we knew we wanted to try and affect change when he died. There have been around 250 clinical trials for DIPG around the world. None of them have been successful. Imagine if we can change that. So far we have raised $2.6 million for DIPG research, with a goal to reach $3 million. We have three scientists working on the project, and we are funding three clinical trials for children with DIPG, as well as all the pre-clinical research costs.
Your blog is absolutely beautiful, but is heartbreakingly sad. Does writing help you in your grief? For example, in talking about what he should have been at age 9?
I do find writing my blog cathartic. It's both a purge of how I am feeling and a powerful tool to take ownership of my grief. It's also incredibly exposing and taxing to write. So much of what has happened has been out of my control. This is my way to communicate the complexities of my experience, my resilience as well as my vulnerabilities. Grief is complex, with so much light and shade. People say to me all the time, "I don't know how you do it". That's their way of exploring how they would cope if they were in a similar situation. My blog is a taste of what that could look like. I think that's part of the reason it resonates. People connect to something much more when it feels personal. This could happen to anyone. We were that family. Another huge part about why I write about my experience is to honour Levi, the life he lived and the person he was. I want to build something in his memory and create awareness of the impact that DIPG can have in order to change the outcome for other kids.
How can we help with Levi’s Project?
We would be over the moon if people could donate whatever they can at www.levisproject.org. The only way we are going to find a cure for DIPG is through research, and research costs a lot of money. We would also love for others to create awareness for Levi's Project by fundraising, whether it's through a fun run or walk, birthday, school event or trivia night. You can check out the fundraising page on the website for details or email me at firstname.lastname@example.org if you want any information or support.
What advice do you have for any parent who might be encountering a similar heartache?
Life is precious. If you can, focus wholeheartedly on your child and your family. Love as hard as you can because it does matter when they are gone. I know we gave Levi every ounce of our being, and he felt that. We were privileged to be able to give him that – not everyone gets that opportunity. When he had to face death at just eight years old, I know it helped him feel less alone.
What advice do you have for anyone whose friends or family might be experiencing a similar pain?
People always ask what they can do. I say just continue loving me and supporting me. Stay close. Always check in, even if you feel like you are overdoing it. Life gets messy and relationships get hard after a child dies. You need connection to feel normal. Any opportunity for your feelings to feel validated is welcome. Don't put the onus of help on the bereaved. "Let me know if there's anything I can do" is not helpful when you don't even know what you need. Sometimes you don't even know what you want until you're doing it, so be specific, "Can we go for a walk tomorrow? "Can I cook you dinner on Tuesday?" "Let's get a coffee this week." Anything to take the burden of permission or effort away.
What is next for you, for your family and for Levi’s Project?
As a family, we will continue to try and live the best life we can for the one who can't. That's not a grand statement. It just means finding joy with each other and those who matter most to us, in whatever way we can, despite the many challenges we face. For Levi's Project, we can't wait for the day, in the not so distant future, when the clinical trials start. Imagine if we can find a treatment that works!
What legacy has Levi left?
Levi was always thinking about others. To know that he's helping kids like him, even after he's gone, would make him so happy. When he was alive, he taught us to appreciate what we have. I know now that love is the only thing that matters in the end. A life means something. His certainly has.
The Melbourne-based founder of The Suite Set Sally Branson Dalwood has worked as a senior media advisor to a prime minister, developed and promoted strategy around entrepreneurship policy for women and worked as the director of a political party. Ask her about her career in politics, and you'll hear about the time she was catapulted off an aircraft carrier. And the time she climbed a rope ladder down the side of a US warship into a pilot boat floating aside it in the middle of the ocean. There's also time she was accompanying the Prime Minister when the Duke and Duchessof Cambridge visited Australia. Dalwood not only attended the royal's events in Sydney and Canberra, but travelled in the car behind the couple.
Tell us about your days in politics – what was your role and what did it entail?<p>Over a career in public affairs, I've played a few roles in politics. I've worked as a senior media advisor to a Prime Minister and developed and promoted strategy around entrepreneurship policy for women. My last role before I had children was as the Director of a political party - it's the true behind the scenes role of a political party. Campaigning, electioneering, making sure membership was happy, making sure each elected politician was doing what they said they'd do and working to harmonise the elected officials aims with that of the party's membership. Each role has been early mornings, long days and working on projects that were highly value-driven - so many great days of job satisfaction.<span></span><br></p>
You were once catapulted off an aircraft carrier…<p>I was working in public affairs for the US government at the time and had fallen into the role of Defence specialist. This is a role I had never thought I would have interest or aptitude in, but it turned out to be a life-changing experience for me. I learned so many lessons in crisis management, planning and about service and community. Who knew? I had to host a visiting group of VIPs on to an aircraft carrier -these things are about ten times the size of the town I grew up in. It's a true skill to be able to land an aeroplane on the deck of a ship, it take amazing technique and defiance of the laws of gravity- the plane literally has to catapult off a slingshot to get enough movement to fly. As a passenger, you have to brace to take off and land because of the velocity. Because I was managing the guests, I spent a week "commuting" to work. I kept getting in trouble from the pilot because I was becoming too relaxed and too busy asking questions and chatting. Part of the joy of this role was that sort of excitement, but also learning and appreciating the roles other people play in the world. Sometimes now, I look at my piles of washing and wonder if this really happened.</p>
You also once climbed a rope ladder down the side of a US warship into a pilot boat floating aside it about 500kms out to sea – tell us about this?<p>You also once climbed a rope ladder down the side of a US warship into a pilot boat floating aside it about 500kms out to sea – tell us about this? I had managed a visit by a large warship, it was a visit that had significant political value and interest - it was not without challenges. There was also a really large community element behind the scenes. When a warship visits a port, it's like a mini town arriving so it can be a big injection of money into a community as well as raising some eyebrows. In our planning, I always made sure there was a community volunteering element of a visit, where I would send US Navy personnel out into work with local community groups, from building, repairing, painting, landscaping. We'd lend the sailors in to do meals on wheels and provide staffing respite for community organisations. We tried to provide value for the communities we visited, these sailors come with such diverse skills, cultural background and education. At the end of the visit, the Ship's Captain asked if I would like to sail off the Port of Darwin with them. I initially declined, because it felt so out of my comfort zone. One of the NCIS (like the tv show, yes) officers explained to me that it was a rare privilege and not to turn it down. He also gave me some sage advice on what shoes and clothes NOT to wear. It honestly was an amazing experience to sail out, pods of dolphins aside and get a glimpse into this world for a short time. Growing up, landlocked in a tiny rural community, this was far away from the life I had imagined for myself. The whole climbing down a rope ladder into a boat to come back ashore was not the graceful experience of being at one with the sea as I had envisaged though. I truly learned the meaning of white-knuckling it, I was on the ladder over the side of the ship, holding on to the metal edge of the ship and I'll always wryly remember the lovely, polite sailor repeating <em>"Just let go of the side ma'am. Just let go. C;mon M'am, let it go"....</em></p>
You've spoken about not forgetting the visit of William and Catherine to Australia?<p>I've long been a fan of the Queen and the way she has served and worked in her role, and long-held a soft spot for William and Harry. I had followed their story with interest and was obsessed with Price George and his peter pan collars. I was accompanying the Prime Minister at the time of William and Catherine visiting Australia, attending their events in Sydney and Canberra, travelling in the car behind the royal couple. I remember being amazed at the people lining six deep on the streets to wave to the royal couple, and thought it was lovely - albeit extraordinary. My real shock came when I was walking with them in public spaces, I was wholly overwhelmed by the screaming from the crowds. I appreciate the adoration and the excitement but I was shocked at the primal nature of it. It was something I had never experienced before and I found it really confronting. It gave me such a small insight into the realities that come with their privilege and power, gifted through birth and marriage. It also made me think more about the concept of what it is to serve. I think to be prepared to have that privilege, you need to steel yourself for the public ownership. Although from a public affairs/past media advisor perspective, I feel like Meghan and Harry made some strategic mistakes in the way they exited the "firm", I can very much see why they did.</p>
When you fell pregnant, did it change the way you thought about your career – what were your expectations around motherhood and work?<p>I knew a federal election was looming. I honestly thought that at 39, I would have a baby, love it and still be all consumed by politics still. I scheduled in a time frame for my return, first meeting a month after I was due (to keep connected) and then all guns blazing at six months. My expectations were that I would love being a mama, but also that I would still really need the cut and thrust of work to feel fulfilled. I felt confident that I could and would manage it all. </p>
And what happened after your first baby arrived – what led to you leaving politics?<p>I soon realised that although my love for work was still there, it had been eclipsed by my love for my child and my desire to meet our family needs first. I simply could not believe that I felt this way, that my wish to be there for his early days, surpassed my ambitions for my work. I did try and juggle working, breastfeeding, running home from the train station with boobs leaking. I never stopped loving work, but I couldn't make it work. To be able to fully participate in my work at the level I needed to successfully do the role, meant that I couldn't be present for my family. I really felt I had failed. I had failed all the women that went before me, and those I was working so hard to set an example for. I also felt I was failing the progressives in my organisation who had supported me along the way and were working hard to make it work for me. And it was a big blow to my ego too. I kept thinking "but all those other mothers could do it" which is reductive and unhelpful. I had to do a lot of deep thinking about how my identity had changed as a mother and as a professional and what that looked and felt like. I had to get clear on what my priorities were at that exact moment. And after years of just making decisions based on my own values I had to factor in my family priorities too. Funnily enough, I had trouble reconciling what I knew was the right path, the path that physically felt right - which my own expectations of what I should. I still sometimes feel "less than" when people ask "but doesn't being at home with babies bore you? how do you get any mental stimulation" and my honest answer is that I was never bored, I could still self stimulate and be in wonder every day even as a stay at home mum. I've had to work to reconcile this with my value and worth.</p>
What changes would you like to see for mothers who work in politics?<p>I think recognition mothers must be supported to be active and involved in formal policy and legislation making - but after having a newborn, they should be able to take formal maternity leave, even as an elected representative. I think an open discussion about the true challenges of balance, mother and career guilt need to be discussed, that it shouldn't be an all in, or not at all equation. Mothers have to be involved in policy making or else policy isn't fit for purpose.</p>
You've said that politics that ignited your interest in small business – and the innovators – tell me about about this?<p>I was so fortunate to be able to work on "the small business budget" in 2015 focusing on energising a culture of female entrepreneurship and startups. The research and connections that went into preparing this budget meant that I was able to sit down in roundtables and policy discussion with amazing female small business bosses. These were the most invigorating and exciting meets we had. My eyes were opened to the wealth of ideas and also the challenges female startups face - do you want your venture capital with a side of commentary on your appearance or a sexual proposition? I remember one woman coming in for a one-on-one sit down meeting with the small business Minister, but her childcare fell through, so she was in the meeting plus one. I can only imagine the stress she would have felt, but she powered on. Bringing a baby didn't make her ideas any less valid or supported. It was a seminal moment for me - you can bring a baby and still impact policy. These women opened my eyes to entrepreneurship, I was unashamedly inspired by them and even though I'd started my own babysitters club and car wash at age 11, I never thought it was a path I would "need" to take - I was so committed to politics. Funny how it turns…..</p>
Take me back to your first baby – how did you pack your bag? And what exactly did you pack in your bag? <p>I often laugh that our business is based on being organised. I had a reputation for having the most chaotic desk, the most jam-packed handbag ( Once upon a time, I was out on a visit with a VIP and one of the visiting Secret Service complained he hadn't had time to eat, so I dug around my bag and found him a boiled egg). As footloose and fancy free child free couple, we used to joke that we could fling our stuff from one end of a hotel room from the next on a visit and we didn't want that chaos when we were learning about our new baby. I've always been able to pack light (but messy) for a work trip, but when it came to my hospital bag, I did all the overthinking I could. My hospital bag was all sorts of overpacked, overwhelmed chaos. The one saving grace was some cobbled together zip locked bags, so we had a semblance of organised. It sparked a kernel of an idea - if I could manufacture something, that made sure there wasn't any overwhelm or chaos when everything else was overwhelming and chaos.</p>
If you're not a naturally organised person, what's your advice on packing a hospital bag? <p>I'm not - which I feel brings a special perspective to our business! Hospital and birth is unfamiliar and often uncontrolled situation. So it's good to be able to control what you can and focus on the important things rather than what's in your bag in the hospital. So prepare well when you can, segment your bag and follow a good list. </p><p>If you've got a support person, make sure they're playing an active part in packing. They know where and what things are. You'd be surprised at how hard it is to recognise the difference between a singlet and a onesie at 2am if you don't really know what they are to begin with. Only pack what you need and what you know will bring you joy or make you feel comfortable. Oh, listen to me, Marie Kondo-ing. In every single hospital, I've been to, there has been a chemist close by which always stocks essentials so relax into knowing that if you do forget something, you can always find it close by. My other tips are just to pack for simplicity, ease and comfort. </p>
You did a load of research about new parenthood – what did you find?<p>That all mamas, young and old, felt overwhelmed by the pressure to have it all worked out and all perfect before babe was even born.<br></p> <p>That often we spend so much time getting a good looking nursery set up, we have not talked about the pressure of being prepared or our values around parenting. To be able to take small action steps about organising the detail, means it isn't overwhelming when the time comes.</p>
So many women think about launching their own business - Tell me about the early days of launching The Suite Set and have you ever looked back and wished you were still in politics?<p>Talk us through the ups and downs? Some days when I worked madly through nap times, or tried to ignore the triggering piles of washing, and worried about finance - I have thought how nice it would be to be salaried and in politics. Even now in COVID times, there are some days I think "how can I help more?" Would I be more useful in a formal role. This is one reason we've started doing some information "brokerage" on the suite set - how to actively talk to your health providers, how to have a conversation about your values as a family before babe is born" - so I hope this past experience is informing and value-adding to our community online. I started working on the concept in the 19 months between babes, I did some informal and some more structured research and recognised that the idea was one that people loved and wanted. Although I had done some work in PR in the past, and been and seen so many product launches by celebrities - it wasn't in our wherewithal to launch in a big way (we'd spent our bathroom renovation money on ethically manufacturing the bags so a launch budget wasn't there). To be frank, we were also deep in having a baby who had not yet turned one and a two-year-old - and sometimes even having a daily shower seemed like a task, let alone organising a product launch with balloon garlands and champagne and influencers. It is important for small startups to realise - that isn't what a launch has to be, in order to be successful. We did what's known as a "soft launch". I had to keep reminding myself that "perfect was the enemy of the good" and we launched with the product done, and the webpage as good as it could be for that stage of our business. So we pressed "live" at about 8pm at night, sitting at the kitchen table when the boys were in bed. At nine am the next morning we sent an email out to all of our family and friends, explaining our why and how of the business. We then posted on my personal social media accounts and linked in and shared the website. It was as soft as it gets, but it was the right launch for our business. I'm not saying I don't play the compare game when I see a celeb launch a product with celeb friends and celeb promotions - because any business that needs monetise, loves that exposure. I am saying that accepting that wasn't within our start-up means, was a healthy thing and it's been a true joy and satisfaction to see our business and community grow through word of mouth and recommendation.</p>
How did you go about getting the products made and what was important to you?<p>I had a crystal clear image in my head of what the individual bags would look like, and I kept true to that during the whole manufacturing process. For me, it was vital the bags were quality and strong enough to be reusable, for them to be as environmentally friendly as they could be (for plastic), they were smell free and nasty free. Although our market research showed differently (!) having them made in Australia was really vital too. In fact, in all of the suppliers of product and service were Australian, and mostly female sole or small traders. I felt this needed to be part of our DNA. But, easier said than done.<span></span><br></p><p>It took a literal year of learning about plastic compositions, learning about manufacturers and speaking with manufacturers to work out how I could get this done. I dragged a six-month-old and a just turned two-year-old around international plastics fair, powered by coffee, bottles and bananas meeting with suppliers and explaining I wanted an environmentally friendly plastic option to manufacturers from all over the Asia pacific. I was well and truly a novelty at that trade fair. It was here, just as the wheels fell off and the tears were almost flowing down the three of our faces - that I saw my supplier - I couldn't stop and talk but emailed as soon as I can and set up our manufacturing relationship. They were very patient as I felt my way through the process, multiple questions per email and multiple emails a week.</p>
What is your vision for The Suite Set?<p>For our products and our conversations in our community be a valuable contributor to supporting growing families, in whatever form they take. That we engage in conversations about understanding realistic and manageable expectations for new mums, we promote care and community and we just make things easier. <br></p>
You describe yourself as a fixer – how has this practical approach to solving problems helped you in your career?<p>I think that "fixing" things comes from a mindset of generosity in the first place. I've learned that to fix things, one must remember a few "rules". Some things don't actually need fixing however there is always a workaround, always a way to be able to reframe a problem and it is important to go along the path knowing "the outcome may not look like you thought it would look, but it is the right outcome for the time". This mindset I am sure is a genetic one, inherited from my nana and my mum. It's meant that I've always been willing to get in and do the work for a better outcome, find the greater good (because that's what fixing is) and be willing to be flexible. By knowing how to reframe something, means you're never stuck. This comes in handy at any workplace, or in any relationship really!<span></span><br></p>
What do you think holds women back the most?<p>Our lack of self-belief coupled with the sad reality that other women can be dissuasive of each other. Also the pressure we put on ourselves for perfection means we struggle to be able to bring joy into our lives - we're so busy with the mental load, of making sure we're doing everything right, the competition - we forget that it feels good to feel good.<br></p>
If you could go back to before you had children, what advice would you give yourself?<p>I wouldn't have listened to even myself, and I still don't listen to myself - when I say "all babies need is love and food, so rest, be kind, don't worry about the washing piling up".</p>
By the time you finish this story on Auguste founder Ebony Eagle, you'll want to move to Byron Bay, own a couple of horses and dress exclusively in Auguste. At least, I did. She's the type of woman who spreads positive energy and this energy trickles down to the clothes she designs. Ebony has created a fashion brand for women and children that's driven by sustainability and giving back.
Take us back to your childhood. What was it like and what are some of your most vivid memories?<p>There are so many magical memories, particularly of summers spent at our beach house in Rosebud, Victoria – days that seemed to go on forever in a world that felt so big spent with my brothers and sisters, aunties, grandparents. Lots of sand, sun and banana paddle pops on the beach. We still own this beach house and boat shed and I now take my children there to do the exact same thing. It's so unbelievably nostalgic for all of us. It's the most at ease any of us ever feel. My childhood also wasn't without adversity, but children are incredibly resilient and you learn to deal with the situation you are in as best you can. These things shape who you are. I'm from a big family of four children and we moved around a fair bit so, affectionately, home was always where the chaos was! </p>
What was your career path like prior to starting Auguste?<p>I've worked since the day I turned 13, starting with an after school job at the fruit shop, into weekend jobs at cafes and then when I finished school at 17 I was a nanny for a travelling family and spent two years hopping all over Europe… This was where the fire in my belly grew for travelling and I believe it's where my perspective on more of an entrepreneurial career took shape. When I landed back in Australia at 19 I waitressed for a few years until I got poached for a styling/production job at a studio in Richmond. This is where I learned all about shoot productions, etc, and it was whilst working here that I decided to take the leap and start my own fashion brand at 22. I managed to secure a small loan to start my business while I was working full-time and then resigned to waitress again by night and work on my label by day. I had that brand 'ebonyeve' for ten years before I started Auguste five years ago.<br></p>
Was it always a dream to have your own label, or did that come about organically?<p>Well, my Grandma taught me to sew when I was eight-years-old and I continued sewing my whole life. I've always been a massive vintage and op shop trawler and I'm creative, so the whole design part came quite naturally. The business part I learned on the job!</p>
Did you have your girls prior to starting Auguste, and if so, what was that transition like?<p>I had Coco when I was 28 and then Frankie when I'd just turned 30 so at that time, I was still running my previous label 'ebonyeve', so yes I had a business. I never stop working and throughout pregnancy and when the girls were young this didn't change… I was living in Bali at the time that the girls were young though so I just worked wearing a few less items of clothing! Work-life balance will be my lesson in this life – it's something I'm still trying to master.</p>
What's been the biggest challenge of motherhood? And the biggest blessing?<p>The thing I find most challenging is the work-life balance juggle and the fact that I have missed out on so many precious moments due to my work commitments. The biggest blessing is all of it! The whole apple, even the seeds. </p>
You've lived in Melbourne, Byron, Bali and Sydney. Do you feel that you're settled now that you've moved back to Byron, or do you crave change? What were some of the challenges and joys of living overseas?<p>Yes, I've moved around a lot in my life. Auguste HQ has always been based in Byron so moving home to here made sense for us and we always wanted to bring our children up here. I'm very settled now. I've travelled enough for ten lives! Honestly, we didn't find living overseas challenging, we adore different cultures and the perspective that they give you. We are so grateful that our girls started their life like that. All four of us loved living abroad right up until the very end but you just know in your core when it's time to come home.</p>
Is there something about Byron that called you back? Has moving to Byron influenced your designs or your process?<p>Auguste HQ has always been based in Byron so coming back here was the natural decision. Growing up here as a teen I was super eager to get out and experience the world but after I had my children, I definitely felt a strong pull to bring them up here, but more so to the hinterland where we now call home. I just love being in nature, surrounded by my children and as many animals as I can fit in! My designs have always naturally thrown together bohemian and vintage inspiration so I suppose, yes, growing up here could have been the beginning of that attraction.</p>
What are your time management tips?<p>Oh god, finish emails in your evening bath? Between the kids, the horses, the business and my embarrassing attempt of a social life, there is very little time to stop and try to time manage anything, so I pretty much fail constantly, no tips here!<br></p>
How would you describe the Auguste aesthetic?<p>Classic, bohemian, feminine, timeless.</p>
Who is your ultimate Auguste muse?<p>That's a tricky one. Stylistically, the ever-influential Jane Birkin has always been a huge creative inspiration and a measuring stick for my designs. Would Jane wear it? Yes? Good, let's do it. Her sense of fashion was just so easy going and feminine, it's everything we make Auguste to be. I've also always felt inspired by Brigitte Bardot and her femininity, she just made it so approachable. My main inspiration though is Jane Gooddall. Her connection to nature, work with animals and bravery in her field, particularly as a young woman, have given me so much courage to create, stay true to myself and use my platform to give back to the planet. </p>
Auguste is such an ethical label, from your fabrics and factories to your ongoing charitable initiatives. Is that something that has always been important to you?<p>Absolutely, I always wanted to get to a point in business where I was able to give back. To have a platform and a voice is a gift and one that I believe should be used wisely and for greater good.</p>
Do you think the fashion industry is becoming more conscious?<p>Absolutely and largely that's being driven by consumer demand, which is just awesome. It won't all happen at once, but the fact that more and more consumers are seeking out eco-friendly fashion alternatives means that more brands will follow suit. They're starting to realise that if you're not thinking about your impact on the planet, you're not being competitive, or responsible really, and that's the only real future for fashion. </p>
You regularly design collections in aid of a charitable cause. Tell us about your latest 'Hero' campaign...<p>As a mum and as a member of the global community, I wanted to unite people in recognising the dangers of bullying and how important it is to use your position to stand up for others. We designed a range of Hero slogan tees as a call to action and donated 100% of the sales to the National Centre Against Bullying and the Cybersmile Foundation to continue their work preventing abuse and giving support to sufferers. I'm incredibly proud that our message of solidarity was shared by thousands around the world and we raised more than $85,000 for our partner charities. </p>
Why is charity work so important to you?<p>It's just part of who I am and what I've always believed in, but when I had children it became a larger priority in my life. If we're not working to leave the planet a better place for our little ones, then what are we doing? How can you see what's happening in the world and not respond? I've worked hard and now I'm fortunate enough to have this platform, so I use it. To me that's just good sense, simple as that! </p>
Little August is your childrenswear line. Tell us about the inspiration behind it?<p>My daughters were my inspiration here. I created little Auguste when my girls were little and loved spinning around in full skirts, it was made for princesses – and even though those two princesses now will only wear ripped denim shorts and Auguste tees I'm so happy that there are so many other little angels out there still spinning in our creations.</p>
What's your parenting philosophy?<p>Shower them with so much love and kindness that they don't realise you often forget to do story time. Also I believe in teaching my girls independence – if they are able to do it themselves then they do. Also have fun with them and keep phones down.</p>
One of your most popular charity campaigns was your 'future woman' tee range. What sort of example do you want to set for your daughters?<p>The 'future women' tees were part of our charity campaign raising money for UN Women and promoting female empowerment, and as a mother of two daughters this meant so much to me. A big lesson I hope my daughters learn from me is to not be passive. Make opportunities, don't wait for them. Offer to help, don't wait for someone else to. Use what's at your fingertips, and then reach for more. </p>
How has COVID-19 changed the way you think about your business?<p>Covid brought a lot of perspective for me. It showed us all that everything can literally stop overnight, so for me it was a reminder to make sure that what I was doing was right for me personally and was to the standard that I wanted. We are doing a lot of work on our ethics and sustainability and really our whole brand identity. It's a time to contract and refocus on not necessarily being big but being great… and I am LOVING that.</p>
What changes will you be making?<p>We made the decision around the beginning of Covid to exit from wholesale entirely and focus on our own vertical channels, making Auguste exclusive to our online store <a href="http://augustethelabel.com/" target="_blank">augustethelabel.com</a> and our Brisbane and Byron Bay boutiques. The exit was a huge decision for me, however I know it was the right one. Being a purely vertical business means we can retract and refocus. There were many factors in this decision however the most important was the ability to continue on our journey to being a more ethical and sustainable business, because that is what it is, a journey – it is not about any one decision, it's every decision you make. Being a vertical business means we have the flexibility to make the decisions we feel are right.</p>
The story we are told of motherhood is one of lightness that leans into the beautiful, the incredible and the magical. However, for all the lightness there is shade, and in the shadows lies a rollercoaster which pushes you to your limits and at times breaks you. Both sides are important for open, real dialogue around motherhood. As a health professional I entered motherhood confident. I had all the resources at my fingers tips as a women's health physiotherapist. Despite this, my journey was far from smooth. Even though I was well informed, it didn't make me immune to the real emotional and physical challenges of motherhood that are still so rarely discussed.
My Motherhood Journey<p>When I first fell pregnant, I was blissfully happy. I felt I had realistic expectations of what motherhood was going to be like. I was also very aware of the high rates of mental health conditions that come up during the perinatal period and knew what to look out for. I was primed and ready to be the earth mumma I was destined to be.<br></p><p>Then my pregnancy had a slight curve ball, I had placenta previa which meant many unsettling vaginal bleeds, no exercise, and the very real threat of complete bed rest. Thankfully, my placenta lifted around 35 weeks, and I was able to have a vaginal delivery. I was induced, the birth was fast and intense, and I needed a ventouse and an episiotomy. Despite this, I felt very positive about my birth mainly because I was informed, supported and respected through the journey. We had a healthy little girl, and I was in absolute awe. Pure. Magic.</p><p>And then the post-natal period began. I had feeding issues, my baby wasn't gaining weight, she had blood in her stool, and chronic vomiting. Paediatricians prescribed various medications and prescription formula, but the constant crying from my bub and the sleep deprivation for all of us continued. For many years. </p><p>Bit by bit my confidence began to crumble. I was anxious that she wasn't getting enough nourishment, I felt guilt that this was all my fault and I started to doubt myself and believe I was a bad mother. This was not the motherhood I had pictured. But as all 'good' mothers do, I put on a brave face and pushed on. I continued to run my business, treated patients, and carried on with life. Under the surface, I was utterly depleted and hanging on by a thread. </p><p>And then we fell pregnant with our second baby. During this pregnancy my level of exhaustion hit a new low. I was still getting up through the night, working and studying, and I became highly anxious about how I was going to care for another baby.</p>
The tiny habits that we do everyday have the power to change our lives. Whether it's getting up early, so you have a moment to yourself before the kids wake up or making time to exercise or meditate or something as simple as a cup of tea in silence, these habits have a profound impact on our wellbeing and also our mental health. Yet, with small humans to care for, so many of us find it hard to start a new habit and stick to it. And we find ourselves in a rut which we can't get out of. In his book 'Tiny Habits: The Small Changes That Change Everything', world-renowned behaviour scientist FJ Fogg looks at how we're approaching habits the wrong way.
'Tiny Habits: The Small Changes That Change Everything',<img lazy-loadable="true" src="https://thegracetales.com/media-library/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8yMzUzNTYyMi9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTYyMjE0MjgwMn0.8TI2UMx2pnQoTAFVlp9HkCdBEWJoKZspHAXLU4_i7aY/image.jpg?width=980" id="74866" class="rm-shortcode" data-rm-shortcode-id="39d6cf7788a4ec7837ad26212ee4ba20" data-rm-shortcode-name="rebelmouse-image" />
The Grace Tales is a global lifestyle platform for mothers searching for style, substance, and solidarity. Driven by creating content, community and connection, we celebrate the paradox of modern motherhood; the struggle and the beauty, the joy and the relentlessness.
Sophie Harris-Taylor captures something we often try so hard to hide: our vulnerability. As mothers, we're supposed to be strong and powerful, yet what is often overlooked is that our transition into becoming a mother is the most vulnerable period of our lives...
"I think we're often afraid to show our vulnerabilities," agrees London-based Harris-Taylor. "Perhaps we think by showing this side people are going to judge and only see weakness. Where actually I think there's something incredibly powerful and strong about being openly vulnerable. I'm in awe of the people I photograph, its often about striking the balance between confidence and vulnerability. I've found my work to be a very therapeutic experience, it took me a while to open up myself, but by doing this it has allowed my subjects to open up and engage in an honest conversation."
You’ve said: “I think most importantly that looks don’t define who you are, and in the end don’t really matter.” Why do some of us take so long to come to this realisation? And tell me your thoughts on beauty and how it led you to create Epidermis?<p>I think when we're younger we get so caught up on our looks, perhaps before we know where we're headed in life, it can seem like the be-all and end-all. And sometimes it comes from a place where you just want to fit in. And perhaps it just comes from life experience that you start to realise other things matter more.<br> <br>It sounds cliché but beauty is of course so subjective yet in the mainstream media we are often not exposed to this kind of diversity. Epidermis for me was a way of showcasing beautiful women in skins less often seen. Most of my personal projects seem to come from my own life experiences and throughout there is always some element of my own vulnerability – I began to reflect on my own past and feelings towards my skin, I'd suffered from severe acne. Back then, there were no idols, role models and people to look up to who had anything but flawless skin. Which obviously meant I struggled with my own self-image. We've come a long way since then, what with body positivity and generally people speaking out about beauty standards and promoting diversity. However, I still felt that there was a lack in representing skin in an honest and open way. </p>
Your work captures a character’s vulnerabilities – why do you think we sometimes hide our vulnerabilities and what have you learnt about being vulnerable through your work?<p>I think we're often afraid to show our vulnerabilities. Perhaps we think by showing this side people are going to judge and only see weakness. Where actually I think there's something incredibly powerful and strong about being openly vulnerable. I'm in awe of the people I photograph, its often about striking the balance between confidence and vulnerability. I've found my work to be a very therapeutic experience, it took me a while to open up myself, but by doing this it has allowed my subjects to open up and engage in an honest conversation.</p>
For your series Sisters, you photographed and interviewed over 70 sets of sisters, of all ages and backgrounds – and have said that it was a way of reflecting on the difficulties of her own relationship with her sister. Can you describe this relationship?<p>At the time I created the work, there wasn't much of a relationship there if I'm honest, we'd not really been able to see past our teenage years and sisterly disputes. Since then we've started to rebuild our relationship as adults. I think I tried to understand a bit more about the complexities of sisterhood and the journeys of this kind of lifelong relationship.</p>
You’ve described mastitis as more painful than childbirth – tell us about your experience with breastfeeding?<p>Yes looking back I really did! It was very much a love/hate relationship. In some ways I was lucky, my son latched on quickly in the hospital and fed well. But getting mastitis early on meant it became very difficult and painful to feed him at times. I seemed to always be overproducing which led to the ducts becoming completely blocked and then getting infected. The pain combined with sleep deprivation was pretty exhausting. My son used the breast as a comfort a lot so for months I felt like he was completely attached to me, but never that full. I started mixed feeding after about 4 or 5 months.. this helped him sleep through the night. Once he started weening there wasn't much milk left and in one breast my supply had pretty much dried up all together. As soon as I stopped, I missed it.</p>
How would you describe the intimacy or closeness of breastfeeding and how did it make you feel?<p>It's pretty magical. I loved the intimacy, the comfort it gave him which in turn it gave me.</p>
There’s sometimes a longing for personal space, as mothers feel they have a baby constantly attached to them. Did you ever feel this?<p>Absolutely I felt constantly clinged too. Being pulled and tugged whilst covered in milk really did make me long for personal space. Then again, I felt this huge guilt, because I'd met so many mums that couldn't for various reasons breastfeed and there I was complaining about it.</p>
You’ve always had a complicated relationship with your body. Can you tell me about this relationship – and how did breastfeeding change the way you felt about your body?<p>Having had an eating disorder since my early teens, it's been an ongoing battle really. I don't know if breastfeeding really changed the way I felt towards by body but certainly postpartum I was desperate to get back to my old body. And having never had large breasts before, this made me feel pretty uncomfortable, physically and mentally, and it was weirdly unfamiliar.</p>
You felt lost after you gave birth – can you take us back to this period of your life and how you felt?<p>I did, I think because you've got this new identity suddenly as a 'new mum' and your life as what you knew it has completely changed overnight. But you know deep down, you're still you and your identity hasn't really changed at all. Don't get me wrong, I actually loved becoming a mum, but I found the day to day, the monotony of it all at the very beginning pretty boring. My friends were working, and I felt in some ways a bit bored and not that stimulated. When I started to make work again felt like I got a bit more of myself back.</p>
What were some of the most vivid memories you have of shooting MILK?<p>Zenon my son, was there for most of my shoots. This was in some ways really fun and a real bonding experiences between me and the Mum. But looking back a complete nightmare. Logistically. At the beginning when I started shooting, he couldn't even sit up by himself so he'd often be just out of shot, lying on the bed next to the other Mum feeding. Then towards the end, he was running all over the place, pretty much destroying the house..</p>
What messages do you hope women will take away from MILK?<p>It'd be nice for other women, to feel they can relate to the images and experiences of the other mums a bit more, than the typical nursing Madonna-like images we are used to seeing. For a lot of people and not just men, they find it kind of gross. Even though we've all seen a cow being milked, I guess women's breasts have become so sexualised, that actually what they are originally for has almost been forgotten. I think the more we talk about these things and make them more publicly seen, the less taboo they become. At least, that's the hope.</p>
"I know that abandoned is a word that has been used in telling that story, but I actually don't want to use that word anymore," Zoe Hendrix tells me, when we go back to the beginning of her life, when she was born amidst the Eritrea-Ethiopia border war...
When she was five years old, she went to live at an Ethiopian orphanage with her twin brother. In her own words, "It sounds like you abandon an old tire on the road or something, and to me, it's more that she surrendered us because she was very unwell. I only learned this recently as well, so that's why I want to correct the wording I have used previously." Hendrix and her brother were later adopted by a Tasmanian couple and moved to Australia. Fast forward to 2015, and the country watched Zoe marry Alex Garner on the very first season of Married at First Sight. The couple went onto have a beautiful daughter Harper-Rose, but have since separated.