By Judith Sibley, mother of Lily-Mae and Director of Hand in Hand National Children’s Cancer Charity.
In 2012 when we received the diagnosis of stage IV Neuroblastoma, it was as though my entire world ended in an instant. With the diagnosis came frightening survival statistics and what became a lengthy course of treatments that spanned years and continents to save her.
Lily-Mae had just turned four when she was diagnosed.
On the eve of her twelfth birthday amidst the uncertainty of Covid-19, I took a moment to reflect on the lessons learned through this incredibly difficult journey.
Today is her last day of being 11 – tomorrow my miracle child will be 12. I woke up early and stood by her bed just watching her sleep; so peaceful and beautiful, and so very very fortunate.
Where have the years gone?
Each year, each day, moment, second; each breath is a gift I have never taken for granted, something that my friends who’ve walked in the same shoes will understand.
The entire world is in a very strange and frightening time right now and will continue to be for some time. In reflection, it is as though our own worlds are little snow globes filled with those we love and what’s important to us.
My entire world ended in June 2012 with the diagnosis and stopped me in my tracks. The diagnosis was coupled with fear, confusion, sadness, loss, unemployment, uncertainty and real isolation. Parents of children with cancer often spend weeks and months in isolation and we did it whilst our precious children were incredibly sick.
In many ways when our snow globe was glued back together, it was and still is a very different snow globe.
And though our worlds and snow globes have cracks; they’re not all negative markers of the past. With our childhood cancer journeys come resilience, strength, understanding what truly matters, appreciation, patience, and a newly acquired ability to understand medical research. Above all else love; so very very much love.
Right now, a lot of people’s snow globes feel shaken as our lives have been turned upside down. The same feelings of fear, confusion, sadness, loss, unemployment, uncertainty and loneliness set in, and it’s easy to feel as though we’re alone in this in our own shrinking worlds.
As we adjust to these very strange times, mind your own snow globes (they’re easily shaken and very delicate) and remember what matters. Trust in this – the turbulence in your snow globe will settle and this too shall pass.
