I spent my nights in my tiny hostel room one floor beneath the NICU, researching and finding out all that I could and trying to get my head around what our life might look like. I kept asking this question to the doctors and one response was “he might be bad at maths, or he might be in a wheel chair, deaf with severe disabilities” I asked if there was footage I could see or other families I could connect with but there was no information available. I needing something visual to help me grasp what my future might look like.
People I would have thought would be by my side through hard times were nowhere to be seen, the people that showed up for me and Alexander during that time were the most unexpected but amazing humans. People who could really sit with me during this uncomfortable time. My beautiful childhood friends, women I had worked with more recently, my old youth-group leaders from when I was a teen, my two sisters came from time to time, my godparents, my two aunts, my dad, all tried to be supportive during this incredibly difficult time.
I was sat down for weekly “family meetings” with the whole medical team and I was gently encouraged to take Alexander to a children’s hospice for end-of-life care. I wasn’t willing to entertain that thought - I knew he just needed more time, e needed to come home. After living for a decade in America, I knew that Alexander was lucky to be born in Australia, to have access to our excellent health care system. I wanted to ensure Alexander was given every opportunity and resource available to receive support in these early days. Days then stretched tho months. All I could do was advocate like a mother…… express milk for him and love him, hold him and sing to him.
Once I got Alexander home, it was a massive learning curve to care for him. He needs help with breathing overnight and relies on a bi-pap machine and oxygen to breath properly while sleeping. It was confronting and hard but I knew this is what he needed, so I just got on with it. Inserting the feeding tubes had to be done one-handed while using the other hand to help keep his head still while he cried, carrying heavy D-size oxygen tanks through my house and wherever we went hauling portable oxygen with us in the event of an emergency. There were late night ambulance rides, many more any surgeries and more hospitalisations and nights in Intensive Care and the ward of the hospital. We went back-and-forth for follow-up appointments and I tried to process what early interventions I should seek out and foresee what he might need next. I always tried to stay one step ahead of what was around the next corner, whilst always knowing in the back of my mind this could be his last day.
When Alexander was 18 months old, after a long struggle with oral eating, it was recommended he get a more permanent feeding tube surgically inserted into his stomach, Alexander is now fed via a g-tube that leads directly into his stomach and is permanently attached to his body. (A Greek mothers dream come true, come on, who doesn’t want direct access to their kids stomach to feed them the latest creations to come from the kitchen!?)
We had spent so much time in hospital, so much time in clinical medical spaces and I didn’t want this to be the only memories I’d have with Alexander. So I made a little promise to him, our own little pact of sorts - I’d show him the world. I’d show him the things that were worth sticking around for, prove that there was so much beauty and joy yet to be experienced, he just needed to give me time so I could take him away and he needed to get stronger first.
I had some other unexpected medical issues of my own to attend to, some more growing and strengthening and healing that needed to happen. Some closure with the ending of my marriage and all I could do was take it one day at a time. Due to my own health issues, Alexander needed to be cared for so I could go into hospital and it was then that we were introduced to Bear Cottage, the Children’s Hospice. They took Alexander to give me a break, he was such a medically complex kid that no one wanted the responsibility of him potentially dying in their care. So in order to keep Alexander safe and for me to recover from surgery, I had to make the hard decision to let him go into care. The wonderful staff and community at Bear Cottage have become like family to us.
Alexander can’t talk, but he loves music. I am teaching him to engage with the world through sound. We spend time every week playing instruments and listening to beautiful music with the help of his hearing aid. He smiles, he’s engaged, he is learning.
Having Alexander has helped me to appreciate the little moments we all tend to take for granted in this life. I am committed to giving him the best little-life possible. However long he is here for, I will make sure I give it my all to give him the best possible experiences. So far he has experienced flying to America, has visited Mexico, gone camping, taken little adventures with me in nature, spent time in the community garden, gone on play dates with friends and as of 2020 Alexander started school at the start of the COVID pandemic, only to be sent home two weeks later to be home-schooled.
We continue to roll with the punches, to find the humour and the silver linings. Sometimes his health deteriorates, sometimes we find ourselves back in Emergency where familiar staff remember us by our names because we’re frequent visitors, sometimes I disassociate with the state of his condition and all the medical requirements and try to just love him for who he is, reminding myself that I’m not his nurse or carer, I’m his mum and I need space to just enjoy him.
I’m learning to just let go of expectations when it comes to Alexander’s milestones. To find space for love and to give back through our lived experience to hopefully help other families that are going through similar situations. I volunteer at the hospital by assisting with input on their extensive redesign and to find ways to think about the future of healthcare as something that can be a little more whole-hearted, integrative, and health-focused.
In September 2019, I met Krunal Padhiar and we started working on the possibility of creating a documentary about Alexander’s life journey. We collaborated using the footage and images I had collected to piece together Alexander’s story in a visual way. I planned for more adventures and invited Krunal into our lives to document these moments amidst the summer’s bushfires and a global pandemic, it made for an interesting time to be a storyteller and to capture moments in an authentic way. Along the way I enlisted the help of some other talented industry colleagues, like Laurel Cook to help with guiding the production and ensure the film came to fruition. Jim Moustakas at Visionair Media along with Chris Carter captured all the aerial footage. Jonah McLachlan helped capture the underwater footage and additional scenes, as well as editing the film. The amazing circle of women around me that were incredibly supportive in getting the film across the finish line with me and providing constructive feedback along the way, including Elsa Whelan, Laura Stone, Elena Guest, Bec Bedford, Marta Scuccuglia, Jo Goodwin, Pau Issel. Hospital mums Fiona Gould and Vita Rose who understand the hospital life and lingo and provided another welcomed perspective. Ileana Hatton who was there to hold space for me and be an objective but encouraging voice. And thank you to all other friends that helped along the way, you have all been wonderful supports and sounding boards in this process as it all has come together through some of the many challenges we have faced along the way.
As a photojournalist, it’s always easier to document someone else’s journey - this story has been especially hard, and impossible to step away from it at the end of the day. This is a labour of love, it has stirred some unresolved grief, it has tested friendships.
