“Mum didn’t get up from bed today.” How I learnt to accept being the sick mum.

My babies were five and eight when I first fell chronically sick 11 years ago. 

Too small to understand, yet aware enough that something was very wrong. 

“Mum didn’t get up from bed today.”

“Mum couldn’t bath us tonight.” 

“Mum is asleep a lot.” 

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This mum was so very different to the well one they knew.   

They were too young to know how to even cognitively process what was going on. It was at this point, as I was navigating 17 rounds of chemo, on high dose steroids and not sure if I would make it, that I went to the library to try to find any books on how to be a sick mum. I couldn't find anything of use to guide me through these unchartered, challenging times. 

I had so many questions I wanted answered, as being the best mum to my kids is my everything. How would I tell them I had a non-curable disease? How would I tell them that I may not be me thanks to steroids, aka 'rhoid rages'? How would I prepare them for when I was not here?

So many questions… what did other sick mums do? 

I was also experiencing the grief of realising I would not be the mum I wanted to be. That I may never get to see them grow up or marry or have babies. 

Image: Supplied. 

How could I be the best mum I could be whilst I was able? I could barely keep my eyes open from 5pm due to the illness and treatment - so much for story time! I also desperately wanted them to remember me as this amazing mother.

The first experience indicating that I might not be that amazing was when we were in Harris Farm one day. 

I had a steroid infusion that week, so was not myself. We were in the queue and my son was being a usual six-year-old and wandered off. I found myself in a ‘rhoid rage’ (an uncontrollable drug-induced state), screaming in a high-pitched voice that I didn’t recognise, “Get in the line now!”. 

The entire store went silent and stared at me.

My son quickly rejoined the queue and turned to the lady behind us and said, "Don’t worry, it’s just mum’s medicine that makes her crazy."

The shame overwhelmed me. What kind of a mother was I? It was then that I realised I needed to tell my kids what was going on and why I was ‘different’. I also needed to check in with my beliefs on what it truly meant to be to be an ‘amazing mother’.  

So I had to give myself permission to do my best one day at a time, rhoids and all. 

Telling my kids I had cancer was the hardest and bravest conversation of my life so far. I bought a bottle of pinot to drink after telling them, as I knew I would I need it, but I found myself drinking a glass prior for courage.  

Image: Supplied. 

How do you stare into the innocent eyes of your babies and tell them the news that you know will change them forever?

Yet kids have a sixth sense of when it is bad. I have learnt kids fear the worst, especially when you use the ‘C’ word, and reassuring them with what is actually happening and including them is way better than pretending everything is fine.

Perhaps one of the wisest and most humbling things I have had to do is to learn how to ask for help from others. 

One of the school mums asked me what they could do to help and I blanked, saying “I’m fine”. As a mother, admitting out loud that you are not coping and need some help takes real courage.

My deep desire to want to do it all is strong, so asking for help was an act of real bravery. But the amazing thing about asking for help, is that people want to help you! 

Image: Supplied. 

I had to let go of my belief around being a perfect mum who could do it all. It got to the point where I realised we needed help, as I wasn't getting better anytime soon.

My husband would rush home from a busy day at work, run around like a madman doing dinner and bedtime with the kids whilst I sat in bed feeling helpless as I was too ill to get up. He would then finally get to sit down late at night to rest and be with me. 

Our quality family time was suffering, so I asked the mums if they could cook us some meals and leave them in the blue esky bin outside our front door. Magically, that esky got filled up every night for months - not just with dinners, but flowers, magazines, and get well wishes. 

The love and support I felt from this kindness was overwhelming. The spirit and generosity of strangers I will never meet and be able to thank keep us going. 

Listen to No Filter with Mia Freedman, where Mia interviews Jacinta Parsons about her chronic illness. Post continues after podcast.

There were so many beliefs that I had around what made a ‘good mum’ that I had to learn to let go of - one of which was making the school lunches. After all, that's what ‘good’ mums do, right? 

There were many days where I was literally so sick that I could not even stand to make the lunches. Yet I got up early and ‘pushed through', making sure there were no packets in my kids' lunchboxes.   

Then one of the mums made a batch of frozen sandwiches, so on my bad days I could just pop them in the lunch box. Amazing! (Just don’t forget to take them out the night before - my kids ate frozen sandwiches for a month before I realised they were not defrosted by lunchtime.)

Being a sick mum has taught me so much about what matters in life. I have learnt to put my oxygen mask on first so I can be there for them for as long as possible. I have also learnt that being strong is also about being vulnerable - showing them the tears sometimes, rather than a constant brave face to protect them. 

Image: Supplied. 

My daughter Isabella didn’t cry for a year thinking that she was being brave, yet my tears gave her permission to show hers.  

I have learnt to grieve the mum I wanted to be and embrace the mum I am able to be, one day at a time. 

I have learnt to accept that how I show up as their mum - living my values and my strength of character - is worth more than any homemade school lunches.

Loving them every day is beyond enough.  

Fleur Marks is a wellbeing expert, strategist, trainer, speaker and wellbeing & leadership coach. She is also the founder & curator of The Wellbeing Store. You can follow The Wellbeing Store on Instagram.

Feature Image: Supplied.