We are not yet completely out of the woods here in Melbourne, Australia with regards to Corona Virus. Yet as the number of new cases has dramatically fallen and restrictions are being eased, things seem less bleak. I am able to reflect with hindsight on that feeling of absolute fear and panic that consumed us all, those early days of wondering who in our family will be inflicted with the Corona Virus, hoping and praying that Australia will not take the same horrendous path as Italy.

For me, however, there was a more unique kind of panic that kept me up at night during those first few weeks, being the mother of a child with special needs.

School holidays have always been a difficult time for me. Sending my daughter to a regular holiday program is not an option, and neither are long play dates that last for hours, children entertaining each other endlessly. Alona is mostly with me. We keep ourselves busy with breakfasts at her favourite cafe, outings to indoor play centres with friends and hot chocolates at my sister’s house. Most vital for me is making sure that I have company, not just for Alona but for myself too.

By the end of the school holiday period, no matter how long or short, like most parents I am invariably craving some alone time, some space from the none stop demands of children. But we get through it and I know that I am lucky to be surrounded by so much love and support.

Waiting for the announcement that schools were to close right near the end of Term 1, when many were bemoaning how behind their children will fall in relation to the curriculum, I was unnerved about how I would cope staying home all day with my daughter Alona, without company for me or for her. It was a lonely, fear-inducing thought. The announcement was eventually made, schools closed and the thought of long days ahead filled with no activities and little schoolwork was daunting.

Usually a positive person, I found I was not responding in my predictable upbeat manner when friends and family checked in on me to see how we were managing. So this is what it feels like to be anxious, that fluttery feeling in my chest that doesn’t dissipate, waking me up at night for no apparent reason. Holding my breath at the cafe whilst waiting for our take-away coffee, hoping that Alona won’t hug a random person, the ultimate no-no during these times. Feeling the rise of clammy sweat on my forehead as she screams in front of everyone when I tell her that we can’t sit for so long outside and drink the chocolate drink we just bought. And attempting to hold back the frustration as she comes to our room every single morning at around 6.30am, fully dressed and asking ‘Mum, what are we doing today?’.

My usual supports – my family and special friends, have not been able to be there for me in their usual way. I am not permitted to hang out in their homes while Alona plays with their old American Girl Dolls that they keep especially for our visits. I am unable to drop Alona off at my mother or mother-in-law for a sleepover, so that my husband and I can have a quiet night together. I cannot sit with Alona at my sister’s house on her couch quietly, while Alona is entertained by her cousins and their dog, Santi.

But as those first few weeks slowly passed, I noticed that I was able to appreciate the precious moments shared between me and my daughter during this precarious time, my child who needs me in a way that my other children don’t.  The daily coffee outings, Alona on her scooter while I walk along to keep up with her, have now become part of our routine, providing comfort and structure.  And now when Alona comes in and asks what we are doing today, my response of ‘we are walking to the cafe’ has become sufficient for her.

The time spent sitting as a family, with my husband and three children gives me strength to enjoy the positive moments in this situation. The break I get when Alona’s carer comes is a godsend, one that keeps me sane and gives me energy to continue for the rest of the day. The joy when the sun comes out and we can sit in our backyard as a family fills me with gratitude for our outdoor space, something that many others are not privileged to have.

Nowadays, when asked how we are doing, I find myself responding honestly that ‘we are doing OK.’ This is quite the contrast from my response a few weeks ago. Alona still has her outbursts and very difficult moments, but by the end of the day I seem to have mostly forgotten about them.

How is it that the feeling has changed so dramatically? Is it that Alona has gotten used to the new normal? Or that I have? I can’t quite figure it out and I will probably never know.

Honestly, it does not matter. I now know what it is to experience that feeling of anxiety in your chest that threatens to never subside. And yet for me, it has subsided. It occasionally creeps up, but I know that it will pass and I will be able to let it go.

This difficult period is not yet over, but I am proud of us – me and Alona together.  I know that I am lucky that this feeling of anxiety was transient and that I have been able to overcome it.  And I am grateful that, although unbearably difficult at times, following the rules has served Australia well and we are able to see the light at the end of the tunnel.  I am looking forward to sitting on my sister’s couch again.

Article by Author/s
Keren Zelwer
Keren Zelwer is a speech pathologist and active member of the Melbourne Jewish community. She is a feminist and an advocate for disability inclusion.

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