Here I am, dusting off my writers block, reminding myself that in all things we can find a purpose, even while deeply steeped in trying to find your way. It feels good to be here again.
I never thought I’d find myself going from writing about navigating emotional life as a neurodiverse mother, to telling my children that their young, fit father harbours a life-threatening illness.
I pray it’s something you never have to do, however in being able to work out your children’s preferred language – be it visual or verbal - it IS possible to deliver hard things to little souls, without igniting a stampede of distress.
I will also preface our story acknowledging that every child, family and cancer journey is different. I had no intention for this to be guidebook, but rather simply to share the pathway we have paved for our 9- and 11-year-old, which so happened for us, to work wonderfully well.
The blow of going from everyday life, to being told that your soul mate has metastatic cancer, carries an aftershock that nothing in life can prepare you for – not meditation, not yoga, not books, not gurus, not faith, not wealth.
Nope, nothing.
The task of then having to hold yourself together enough to inform your children, is another thing completely as you fight against every instinct biologically programmed in you, to protect them from emotional harm.
Within minutes of receiving the news, one thing I poignantly remember was Jaz and I looking into each other’s eyes, vowing that unnecessary fear and doubt were NOT going to be part of our children’s narrative.
So, how on earth do you take ‘fear’ out of the words ‘Your Daddy has cancer?
The answer is, not easily, especially when you are in a state of shock and grief too. We have always had an ‘open book’ philosophy in our home, which has always served us well, so I vowed to keep on this path and not stray too far away from it.
As a highly sensitive, neurodivergent bunch, communication has always been of utmost importance in keeping us all afloat. I have always made a big point of modelling the benefits of being able to lay feelings out on the table, especially when emotional waves loom high, or a rupture between family members has occurred.
“A problem shared, is a problem solved” I have always said.
It soon became obvious that the kids knew there was something ‘off’ in our demeanour.
An inner urgency to feed them information before they started making their own, wild assumptions, overtook my initial instinct to tuck it all away and keep everything feeling ‘safe’.
Being such highly visual learners and thinkers, we decided to ease them into the idea of what this cancer LOOKED like, before we gave it ‘THE NAME’ (which might I add, we didn’t fully know either, as the source of his cancer was yet undiscovered). So, I chose my moment carefully, when I knew I could hold their attention. Timing can really be everything in this communication game.
We first talked about there being some ‘bad’ cells in Dads body, which were attacking his healthy ones and causing his body to be sick (kind of like ‘mini villains'). I drew comic-like illustrations for them, of what it looked like on Dads scans, which piqued more curiosity, than fear.
I was then able to cross all the ‘spots’ (lesions) out with a big X, as I explained what his ‘treatment’ (chemo) was aiming to do to the nasty little things.
We illustrated chemotherapy as being similar to cleaning up a big oil spill in the ocean, and that each cycle of treatment he had was “cleaning it up”, putting a barrier around the cancer cells to stop it spreading, and (with all the hope in the world) dissolving it.
I know there are some out there that might disagree with this method, however for us I knew that speaking the “C” word to them was going to spark more terror than ‘seeing’ what its mechanisms were.
It is simply just the way I know my kids process things, just as your heart knows, the right language for yours.
Today, I am still glad we took this approach, as it was more like a gentle segue into what we would eventually need to reveal in its entirety. During this time, were careful about conversations they might overhear, and chose carefully the language we used as we spoke to other adults.
From the moment he got his official diagnosis of Colorectal Cancer we bravely shared with our children that these rouge, villain’ cells that were making their Dads body unwell, was cancer. Thankfully, it seemed, that because they had already understood the NATURE of the beast via my scribbly little illustrations, they took the NAMING of it with a lot less shock than I had anticipated.
Don’t get me wrong, it was one of the hardest things that I have ever had to utter, but I was truly blown away with how they just took it in their stride.
There was a lot of body movement after that talk (as they sought a way to regulate their weird, unsettled feelings), and naturally, there were a lot of questions; I answered them as honestly as I could.
I used my knowledge of present FACTS - not statistical maybes, or projections of what MIGHT happen - but real, hard knowledge of the present and the ‘now’. This helped me keep emotionally sound thorough my conversations with them too. Sometimes I used ‘filtered’ information to suit their age and understanding, however I always told them the truth.
I was very aware, that just like an iceberg peaking above the surface, there were going to be a lot of big underlying thoughts that they couldn’t articulate or were too scared to ask. With this awareness, we linked in with our psychologist, and I made it a priority to gently check in with them, on a regular basis.
“If you have any questions ever, about Dad’s illness, please know that you can ask me, and I’ll tell you everything I know”.
“If there is anything you’re scared about, I bet I have felt it too, I’m happy to share with you, if you think it will help”
“Would you like to know anything about the hospital room that Dad gets his treatment in?” (this was especially important for my daughter as she had manifested a picture of Dad being all alone in a little room with no windows and no one to talk to. Once I took images for her of where he ACTUALLY was – in a sun filled room, with a comfy chair and lots of nurses around - it soothed her anxiety about chemotherapy considerably)
I also used my Every Day I'm a Rainbow cards a lot, purposely leaving them out and easily available. There were many times that I would get a selection of emotions put under my nose, particularly if we were having a rumbly, hard day.
These little visual cues were so important because they helped me soften my bristles too. I could see by the cards they put in front of me, that they were hurting, not trying to annoy me, or push my buttons. Through them, I was able to clearly communicate my feelings in a softer, yet honest way too.
My daughter’s Gr 3 teacher allowed her to write & draw in a private journey at school when she felt anxious, which she did often in those early days of hospital visits. This method proved to be incredibly therapeutic for her.
Its contents were heartbreaking to read, however those bothersome thoughts & images were now on paper, no longer were they rolling around in her head. It also helped us to support her and talk about the things that worried her most.
We had the children involved as much as possible in helping their Dad through his down days with treatments, our daughter would often read to him as he lay on the couch, and our busy little boy would do big, drive by hugs. We gave them the option to be present when the nurse came around to disconnect his chemo too, and just as importantly, gave them the option to not be.
More often than not, they chose to be present. They simply wanted to be part of it, and why wouldn’t they? It made them feel secure, in knowing that nothing was being hidden from them, or spoken about in whispers.
They were eager to get involved with shaving Dads head, and we found that making ‘chickens’ out of the nurses extra gloves brought some joy into the strangeness of the situation too. Distractions of any kind were so welcome during this difficult time - even latex chickens!
In reflection, the methods we chose to communicate a cancer diagnosis with our children, along with transparency and willingness to share our feelings (even the hard ones), were all so beneficial in shepherding our family through this emotionally challenging time.
I will never underestimate the power of using visual imagery to explain something difficult to a child - even a tween - and I hope now you can see how valuable it can be too. It is so easy to forget, that for most children, their ability to comprehend visual language is far superior to verbal.
Fast forward to now, a year on, and we still continue to ride the highs and lows of our family’s cancer journey together. For the most part, we all look forward with faith, positivity and hope, something we are so proud of.
It’s not easy having really hard conversations, however when you pick the right language, it CAN certainly land with more ease.
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