By Rebecca Glover
As I stood in the line, patiently waiting for my turn to enter the small demountable building and follow the leader through an orderly shuffle around tables, I thought to myself “what on earth has led me to be here today?”. Here I was, with my two girls (at the time) waiting for our turn to pick up a supply of weekly groceries. My eldest always loved the idea of seeing what goodies were on offer each week, whilst Ruby sat patiently in her wheelchair, watching as the world passed by.
This place of wonder and curiosity was that of a local church who provided a place of love, hope and nurture. This was a place where we could go, and I’d know I could afford to put food on the table. This food relief program- was just that. Once a week I could breathe and know we’d have food on the table, and lunch in the school bag.
Recently, the memories unfolded, and I have flashbacks of a safe and secure home, ‘happy family’, to then the moment our lives turned upside down. Uncertainty started to outweigh any thoughts of safe, secure, and happy, as I was often trumped with the dark thought of where we would be able to afford to live on just my carer’s income, what kind of life could I ever provide for my girls? Uncertainty as to how I’d be able to commit to any long-term rental property, plus pay the never-ending invoices for therapy, equipment, support and consultations – as this was all before the luxury of the NDIS came in!
Doubt would creep into my head as to how I had gotten to this place of living week-to-week, prioritising the most crucial and important daily living costs and apologising to my girls for what little I could provide. Flashbacks of late-night planning for the day ahead, questions over how many hours sleep I’d get, preparation for leaving the home, getting to kindy, sibling support afternoons, physiotherapy, speech therapy, occupational therapy, paediatrician appointments, gastro appointments, neuro appointments, GP appointments, counselling, equipment trials and the list goes on.
There were days of tears, anger, frustration, and lots of sadness. Days I’d wearily wake from a night that had no sleep, just turn up to a dear friend sharing a similar journey, and just cry. I remember the days of sobbing at public events when I literally couldn’t stop my Ruby from screaming in excruciating pain, trying to keep a face of peace and calm as the irritated, or maybe concerned, onlookers stared at length. I’d hop back into the solitude of my car in relief, where Ruby could scream, and her frail body stiffen, and only I heard and could see this. To the rest of the world – we were ok. When inside we were sobbing for answers and a sign of peace.
The reason for sharing this piece, is to acknowledge that we have been to the absolute darkest of dark places, together the three of us. However, throughout this journey of darkness, the light began to show itself. Very lightly and very tiny at the start. However, through the vision and belief I had that all would be ok, somehow, some day, some time, I just kept going. Then one day – all became clearer, and I felt peace. I felt my nerves settle just a fraction, and hope restored itself once more.
Forever I will be thankful for the food relief program, the members of my local church who gave me a shoulder of hope and love, to the comfort of my parents’ spare bedroom floor where I’d lie in the foetal position wishing this would all end, to the warm and open arms of my dear friends, where there were no questions, just understanding and empathy. Most importantly to my girls for just teaching me that love, faith and perseverance is all that matters – when you live for all you love.
