There is no God of small things

In Melbourne, we’re only just emerging from a COVID-inspired lockdown that saw us watching the rest of the country enjoy simple freedoms, like having coffee with three people from two households, with intense feelings of misplaced betrayal.

Beneath this layer of collective pain felt by an entire state in limbo, I was grappling with what the social and lifestyle restrictions would mean for my ability to go on with daily life and not lose my damn mind.

Because before the lockdown, the most unremarkable of activities had become essential parts of a delicate coping ecosystem, built over eleven complex and challenging years parenting my beautiful deaf and autisticdaughter, Amelia.

I’m not referring to things that need a ticket for entry. I’m talking about my life lived in stolen, deliberate moments, just letting the sun touch my face, sharing a joke with a dear friend or seeking out crowds to absorb the energy of other people.

They are brief yet restorative escapes from ceaseless medical appointments, disability advocacy and spinning giant parenting plates in the air so I can experience ordinary life in its purest form.

In darker moments, usually following a distressing meltdown when Amelia suffers more than anyone, I collapse into those blissful intervals as though the steps to get there are the last ones I might ever take.

When my home life has been more stable, I find I am even more alert to the joy of just sitting still and taking an extra minute to sip the last drop of my latte and breathe. Slowly, in and out.

Whatever the trials of my family life, I relied upon the as-yet-unchallenged maxim that no-one could take from me the jealously guarded time and space I took back just to recover and BE.

Cue pandemic lockdown two in Melbourne. Clinging on to denial, I thought, “what can this situation possibly take from me that I haven’t already given up?”

Jobs I have loved and lost or given away. My marriage? Lying on the wreckage next to my career. The spontaneity of life? It’s been a long time since I’ve truly known that. Feeling safe to try new outings without the very real fear it would end in heartbreak? LOL until I cry at that.

My health then? Physically, I’m a superhero in multi-coloured activewear. But my mind? Without exercise and those hard-won breaks and a Lexapro prescription on repeat, my grip on wellness is not as tight as it once was.

But I am more than just surviving, I am truly living. It’s just that the margins of my life are far more isolating than most people can begin to appreciate.

So when the lockdown came, my back was already against the wall, but it was my goddamn wall to scale or lean on depending on the day. Inside I yelled, “You shall not pass!” in my best Gandalf voice, pretend staff held up in studied defiance.

It didn’t matter, because for more than 100 days, the so-called god of small things was nowhere to be found. Thanks for absolutely nothing.

Amelia struggles to walk even short distances without feeling overwhelmed, so I could only get out for a few minutes a day, running out for coffee before the walls closed in once more. You take what you can get, I know, but it wasn’t enough to lift my spirits.

I couldn’t see my Mum (she lives just beyond the 5km travel limit) just to fall into one of her healing hugs – and that hurt immensely, because I’m a child in pain too.

The sight of families managing to get out for their one hour of exercise a day, streaming past our window on bikes nearly undid me a few times. They looked carefree to me and I hated them for it.

And yet in fact it was the arduous nature of the last decade that had conditioned me to adapt to even greater social isolation.

Amelia led the way on this by accepting the lockdown so readily I could only look at her in wondrous awe. A pause on check-ups and therapy sessions gave her some much-needed space and rest to just be a child in lockdown like everyone else, and she relished it. There are worse things than being bored.

Following Amelia’s example, I allowed myself to relax and stopped straining at chains, real and imagined. So we sat, my girl and I, in our little house for months on end and found a way to create tiny escapes together.

Like our morning coffee and hot chocolate run, making a list of snacks to buy after home schooling was done, or watching our favourite episodes of Fuller House (you heard) just for the Kimmy Gibbler lines. Kimmy is a rock star in our hearts.

Despite the lack of choice I had during life in lockdown, it was a profound reminder that my own resilience isn’t as fragile as the pandemic itself. What is (COVID) normal anyway?

I haven’t learned to cope with my life by accident, or even because I have found ways to keep my sanity for a greater cause than myself. The process by which the parent of a child with disabilities continues to resist and integrate a sense of acceptance is complex and shifts as time goes on.

No, I wouldn’t want to repeat lockdown for all the double donut days in Melbourne.

But if I had to, I know that I would find a way to survive, because my true strength lies not in those small ways I have found to cope but in my ability to uncover them even in the bleakest of times.

Dr Melinda Hildebrandt is a writer and cinephile who lives in the northern suburbs of Melbourne with her daughter Amelia and their dog Sophia. Her first book, Amelia & Me: On Deafness, Autism and Parenting by the Seat of my Pants, is available in paperback or ebook on Amazon. See Melinda’s website for more information or find her on Twitter as @DrMel76.