HOW TO KEEP A PIECE OF YOURSELF WHILE RAISING A CHRONICALLY ILL CHILD

Watching the sun rise on the most eastern point of Australia

Having chronically ill children means just that. It is ongoing, relentless. Losing your identity to motherhood can be hard, but even more so when you have one, two or more children who are chronically ill. Since my children have become chronically unwell I have seen my life turn in a direction I never envisaged. Sometimes finding the silver lining when all has turned to disarray can be quite difficult. As illnesses can come and go in seasons, some are simply more difficult than others, and some of these seasons don’t allow time to consider yourself. But when the storm passes and you get some well needed time to reflect, you may find yourself thinking of the person you were before, and for many of us it's the person and life we clearly can no longer return to. The relentless caring and juggling for all those around you can leave you lost in a world you no longer recognise.

I found that the world I had worked my whole life to build had disappeared overnight. The stability of what I knew and what I was heading for had blown away, and is now no longer within reach. I knew that working was out of the question. I knew my children would never be the same. I knew that our lives would now be filled and exist around the hospital. I knew we would never be financially stable as we were before, and there was a chance we would lose what we already had. That the circles I now understood and related to, were not the same as before. It made me question who I was……. now. I was filled with a sense of guilt, as I was confused with these emotions. I was so extremely grateful to have all my children, after all we had been through. The times I held my babies and thought I was going to lose them, the meds I would need to give, the tubes that required caring for, cleaning, and dressings changed, helping them get through their pain, attending appointments, wiping their tears, whilst trying to hide mine, the constant cleaning up from all the vomiting, the assistance they needed for rehab to help them walk, toilet and shower again, the feeding through tubes, and mixing of formula, helping them through each and every surgery, holding their hands, or holding them tight for the hundreds of blood tests, preparing for all the admissions, the travelling to and from the hospital, the weight of keeping them going, was there even any time for me……... and should there be?

CHOOSE TO FIND THE LIGHT

We had been given this situation, and it was now my role to find the light in it. If I focused on the negatives and not the positives it would destroy me, and quickly. I saw the mental health issues and families separating all around me. With stories and conversations from other parents, I knew I wasn’t going to be that person, this disease wasn’t going to rule our lives, although it had led us down an unknown path. I decided I would change my mindset to ‘choosing’ the situation that I now found myself in. I certainly would never choose for my children to be ill, but I needed to choose my new role, and not think about the role I had worked my life to achieve, that I had left behind.

Now, I wouldn’t have it any other way. Mindset is such a powerful tool, and it's something I learnt from a young age. Not to say that this change happens overnight, as it doesn’t. It is a process. The road for us has been extremely rocky, and with every piece of heartbreaking news that we receive about the girl's condition it knocks me down. With every knock it becomes harder and harder to regain that strength I need to pick myself back up, and to find or possibly understand why. But resilience is like exercising a muscle, and while some knocks can be harder than others, I now see the life we want to return to. Sometimes it can take a little longer to get there- but I trust myself in the process.

I soon learnt that if I wasn’t fulfilling a small part of myself that I would become fragile. I would simply not have the strength that I needed to help my girls follow their lantern down the path to wherever they are destined to go. Sometimes I think it would be easier if I didn’t want to achieve goals for myself. If I took this determination away, I would find contentment in being a mother, and looking after my home and family. But it simply isn’t who I am, so as part of my personal belief- I found a way to embrace it.

EMBRACE YOUR PASSION

While my eldest was admitted for a long time at Royal Children's Hospital Melbourne I would still go to night school, which was in the city. It was only for three hours a night, and only a few nights a week, but I was challenged, pushed, and inspired. While in that small hospital room, I managed to complete my Bachelor of Photography, and finished a photography book that I would then go on to sell. I was proud of my accomplishments, but even more, I felt a small part of myself again, and I felt stronger. Stronger with my children, stronger to hold their hands, and wipe their tears. Stronger to negotiate all the juggling of our lives, and my other two children who weren’t confined to a hospital room. I felt stronger within myself, I knew I had even more capacity and capability than I realised. I turned my pain into inspiration, and was able to use this as an outlet.

More than that, the lesson I was sharing with my girls was not to be defined as the victim. To have passions, and dreams and goals and to follow them. I wasn’t changing the world, I was changing myself, and therefore this had the knock on effect of changing, and inspiring even my own children. When I spoke at rare disease day and exhibited my work, and our story they were proud. They would ask me about the images I presented, and I would tell them how I spoke and told everyone just how strong they were.

It’s not to say that this happened all the time. There are peaks and troughs in our life, and there are times I can allow more time into my passion than others. I found that as the door to my old vision of myself slowly closed, another opened. And one that is closer to my heart. My work became my therapy, and was intertwined with my children, and our story. I was able to communicate through images, moments in time, my heartbreak. What I saw as a mother, whose children were all in pain in so many ways, and I was helpless to change.

It gave me some sort of control in a world that was spinning so fast I couldn’t catch my breath.

SET AND WORK TOWARDS PERSONAL GOALS

This may seem overwhelming, but it can be anything. From exercising, to spending dedicated time with your children, to decluttering, to planting a veggie garden or implementing a new routine. Have this goal where you can see it on a regular basis, reminding you of what your bigger goal is. Chronically ill children take up more time, carry more weight, more stress and more complications, with this comes more lost time. It is easy to forget the big picture, and the dreams and goals in the day to day care. Having this written or printed reminds you of what feeds your soul.

I remember being in a hospital room with all five of us together. I used the whiteboard to write all of our goals for each of us. This was not fancy, it wasn't on nice stationery, or with a beautiful font. But it made each and all of us think about the year ahead, and what we all wanted to achieve personally. Posing the question WHAT DO I REALLY WANT? Not what everyone else wants, or what society demands or expects of you, but what fills your soul? What sparks joy for you. Whether it was winning an award for images created, or gaining another belt in Brazilian Jiu Jitsu, writing a story, or for one of my children, to be able to walk down the hallway without assistance. It opened up the possibilities of achievement, of following your own path, and this is now something I encourage all of my children to do. Not for anyone else but themselves.

TIME TOGETHER- HOW EVER YOU CAN

Time. It goes quickly. As our children grow, there are precious moments that we all hold dear to our hearts. Chronically ill or not. I read a post recently on keeping yourself through motherhood, and the advice was to find time alone. Yes I absolutely know this is important, however I believe that quality moments with our children are more important. I am also constantly working towards creating them. Creating time blocks when we can just BE together. Whether this is in the kitchen, in the playroom, in the backyard, or travelling the open road of Australia. Time is what keeps me awake at night, and like a constant shadow in the corner of the room, waiting. I cannot achieve my goal if I have not spent time with my children. This needs to be a priority for me. So I block time, and create moments, so when I am working towards my goal- it's ok. But a goal for me is important, and I what I do with my time is valuable. I have a social media account, that I don't use that often, and have purposely stayed off facebook. I try to be conscious of how I spend my time, and am aware if I am wasting it. I have very little time to waste, and if I do, I feel it. I spend time photographing, learning, researching and writing. Time is not always easy to find, and with medically complex children it can be very difficult. Whether it is time in a hospital room, while they sleep, late at night, or early in the morning. Sometimes I have all three children at school at the same time, and therefore I take on more,, but the simple fact is if I am not creating, or working towards my goal I feel I am not contributing to giving my children a voice that I believe they have. So I make sure I fit this in.

Another way I get time together, and time for myself is on the road. My husband and I have always loved the open road. In between hospital admissions, we would take the girls away as much as possible. We very quickly discovered how much we loved the open road as a family. It was complex. All the extra supplies, equipment, meds, feeds, masks, spew bags, dressings, and this before we started packing. When we leave and hit that open road we look at all mother nature has provided for us, and we stop.

Milky Way from outside our vintage van while in Byron Bay

In a world that is so fast paced, and in a society that struggles with difference, this is our chance to be free. To be who we are individually and as a family, and we LOVE IT. But the moments I hold close to my heart are the quiet ones. The parts in between the big moments. Sitting outside together reading. The down time. The letting go of external expectations and demands for even a small period of time is liberating and allows time to connect with ourselves, each other and mother nature.

As a photographer and a lover of all things in nature, I find the quiet moments to photograph landscapes. This for me IS MY TIME. We pack food, and a picnic blanket, so the girls can connect, eat, and appreciate the landscape with me, as I lose myself behind my camera. I love the outcome of these moments, and not just for the images I create, but also for what is happening behind the camera. The girls dance on the top of mountains, lay on warm open roads counting stars. They eat on a picnic blanket together as the sun sets, or play games in the back of the car. I talk to them about light, colour and about the beauty all around us. The moon, the stars, the forests, the sounds, the water, the reflections, and we all soak it in. The albums I then create are filled with adventure. They tell stories of exploration, connectedness, landscapes, life and love.

CONNECT WITH THOSE WHO CAN INSPIRE AND RELATE

I get inspired easily. I can also clearly recognise a world that we are no longer a part of. I fill my home, and our lives with people and magic that fill our souls, and not take from them. So we can get lost in our own version of what life is, and all the possibilities that this may bring.

When my children first became seriously ill I isolated myself. I spoke through imagery, and dealt with my pain. Mostly for me this was withdrawing from the world I knew. I could no longer relate to this world. Superficiality surrounded me and I could no longer understand it. I saw through the people who would come to visit who would simply boast about themselves and their position in a life they saw as important. The ‘things’ they wanted to accumulate or had, and the next goal they wanted to achieve. Although I do understand that these things for many people ARE the important things in life, to me they were just ‘things’ and were not important. It simply isn't the way I see life. And when you are faced with keeping a child alive, it simply doesn’t rate. This is a process. It's also very individual. I could no longer hear about people's small struggles, or huge wins, whilst we were struggling to get through everyday. This was a world we no longer existed in. But acceptance and healing comes with time. My inspiration is definitely found in other places where it wasn’t before, and I never stop looking for it.

Becoming involved in things that are bigger than just our story brings comfort. Helping others around us, also makes me feel we are on the right path, and as I always try to find the light in our situation, feel that this must be it. We are a part of SWAN Australia, and Very Special Kids, and a part of the LIverKids family. In these organisations I am surrounded by families who struggle with similar things as us. I have never been the mother group type, but these mothers inspire me so much. I genuinely connect with their stories and think each and every one of them is incredible. As my girls grow older they also gain comfort and inspiration from others. They know they are not alone.

I am not the person I used to be. And I am so very grateful to have found the person I am today.

Although you may find you lose a part of yourself, you may find an even better part to replace it.