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  • Crystal Leonardi

Living in Limbo


Limbo. It's a horrible place to live, and just like that, we're back there again.

Last week we didn't get the news we'd hoped from Sebastian's MRI - the remaining tumor has increased in size. We don't know what it means, or why it's happened so quickly, but it goes with the unpredictable nature of Sebastian's diagnosis. Our parental power to 'kiss it better' has been snatched away once again and I'm left feeling trapped between hope and hopelessness. A fresh reminder of just how unfair the big 'C' can be.


Living with the unknown is difficult but the reality is, we do it everyday without even realizing it. No one can tell us what our destiny is and no one has a crystal ball to guide us through the many ups and downs life throws at us. So how do we survive? I'm yet to figure out the perfect answer but I know that resilience has a lot to do with it.


It's funny, I don't consider myself to be a resilient person; I loathe change, I love control and routine, and I crumble under pressure, yet I somehow got through a year where resilience was mandatory.


It makes me wonder, do we underestimate our resilience and how much our 'fight or flight' instinct contributes to our survival?


I know we all have our strengths, and weaknesses, but when you become a parent, I believe our 'fight' instinct and the resilience we didn't know we had will get us through the toughest of times. When you least expect it, survival happens.


Here is an excerpt from Chapter 16, Boy of Steel where I dive into the emotional impact the COVID-19 lockdown had on us during our stay in Brisbane in 2020...


"My fight or flight response was to pack our things and go, to cease treatment and hide from the cancer at home with our family. The fight was becoming overwhelming. With every delay or complication, I felt more and more helpless and hopeless."

Like I said, when we least expected it, survival happened and we live on to tell our story and hopefully, help other families 'living in limbo'.


***Image: message my girls wrote and added to the Queensland Children's Hospital's Wishing Tree. A place families could come to write messages of hope and love as a dedication to their sick child. A heartbreaking yet beautiful addition to the Queensland Children's Hospital.

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