Courage, love and legacy with Kylie DellaBarca Steel

Diagnosed with chronic lymphocytic leukaemia (CLL) at age 40, Kylie DellaBarca Steel – a Bay of Plenty mum to three young sons – started a blog to document her journey; a space to “contemplate the edge of eternity”.

“Courage, Love and Legacy is also my hand, extended to you, as you seek grace in the grappling of whatever turbulence is rocking your world today. I’m here to walk alongside you, reflect with you, share with you, laugh and cry with you.”

For a regular dose of Courage, Love & Legacy, sign up here. You can also hear more of Kylie’s story, shared with Jenny and Dayna in Season 2 of Parents We’ve Met.

Kylie has generously shared the following post with Parenting Place. It is part one of her series ‘Treatment and Family’, in which Kylie shares practical learnings for navigating cancer with kids. However, her insights can be applied to other contexts too, especially those seasons where, as parents, we feel the tension of prioritising our family’s needs over and above everything else.

Our boys are resilient, hopeful and positive kids. Even so, as the day for treatment crept up on us, I could see and feel it’s impacts on our family.

I imagine that before any cancer treatment there will always be a growing sense of anxiety and concern; there is so much unknown, so much at stake. Going on a trial didn’t help matters, because there was ‘Russian roulette’ day, where my future drugs would be determined by a computer’s randomised selection. So it wasn’t a usual run-up to treatment: a specialist consult, a choice, a decision, action. There was this awkward in-between, knowing but not knowing, a choice to be on a trial, but the rest of the decisions out of our control, a time slowed down, time ticking interim. And also the chance to chat, share and support.

As I navigated all the pre-trial requirements: blood tests, CT scans, heart scans, paperwork etc, I kind of assumed life was just going on as normal for the kids. We’d grown used to my CLL diagnosis, and otherwise, I’d been both healthy and an invested, caring mother. So all was well right? … Kind of…

One day, my middle son, Judah, came home and mentioned he’d asked a couple of his friends to be his support crew when I started treatment. I was speechless. I was impressed by his emotional maturity, his willingness to be vulnerable with his mates and his proactive approach to what was coming. I was also confronted by the fact that, in all the demands of pre-trial life, I was unintentionally neglecting a vital element of preparation: being fully present with my kids’ emotional and spiritual well-being as they too processed the impacts of my treatment.

In all fairness, I was putting elements together for their care: play dates, family and friends around, meal and food provision, sports logistics etc … they were firmly on my mind and heart. Yet I had missed how all this talk of preparations was affecting our environment and their inner thought life. Judah’s sweet and off-hand remark brought that aspect into focus, with plenty of time to spare - thank goodness.

Pre-warned is pre-armed and I was now aware of one of the most important aspects of the days and weeks ahead. Ensuring this was not a time of fear and absence, but of love and connection.

I was keenly aware of how much talk time the trial was taking up in my adult life and relationships. With an amazing community of supportive people, there were lots of asks and updates to communicate. There were lots of people calling for check-ins.

And in the end, many of those calls I didn’t answer. On purpose. Not because I’m unappreciative, but because I needed to limit the chatter and its impact on my kids.

Every time I sat on the phone sharing my story, was a moment I was unavailable to be part of their story. And every time I answered people’s well-meaning questions, it was a story on repeat for my boys… trial arms, drug risks, emotions, logistical juggles, fears, faith… we were all saturating in it, and that wasn’t helping them or me. As much as I found it hard to ignore phone calls, I’m not sorry I did. Although I didn’t have a choice of my treatment drugs, I did have choice what to immerse in.

Putting up boundaries for the sake of your children is an important thing to do. I don’t find boundaries that easy to establish at the best of times. Saying no, turning away from a phone call from a loved family member or a close friend, all the well-meaning people doesn’t feel nice. Saying ‘no’ is hard.

Sometimes we need a bigger YES to help us with our ‘no’.

I was saying YES to my children’s emotional health and well-being. They are important.

I was saying YES to having enough capacity for my family first.

I was saying YES to cancer-free airwaves.

I was saying YES to holding onto a piece of normality, fun and connection.

Knowing what I was saying ‘yes’ to, gave me permission and equipped me to say ‘no’.

During difficult times, limiting the surrounding chatter may be important for our kids. But let’s not limit the love that we need to receive as well.

I knew I’d be in the position to pick up the phone again, and leave my kids playing nearby. In the meantime, I was intentional about letting people know how they could communicate with me, offering and inviting people to use other channels. I’d share updates on my blog, on messenger groups, a prayer and support email and I also established a urgent Plan B WhatsApp group in case something went sideways in those first few days of treatment.

When someone reached out, I vulnerably responded that I didn’t have much capacity for calls and appreciated hearing from them via messages. Friends and family were incredibly understanding. Their best intentions prompted them to call. My best intentions prompted me to protect my kids. When we anticipate people are acting with their best intentions we can be understanding, kind and accepting towards each other, right? Love keeps flowing.

And because people heard and understood my heart, I have been nourished, encouraged, held and sustained by all the loving messages that were sent to me before and during the first weeks of treatment. For this I am incredibly grateful.

Choosing to limit chatter and let in love are relevant takeaways for anyone, whether or not you have cancer or children. Our words have power - what we give voice and time to creates an environment around us. Our world far too often focuses on negative events and news that incite anxiety and deplete positivity. As much as it can be good to stay informed, being sensitive to our capacity for information that weighs our minds and hearts down is important. And prioritising space for things that lift us up, nourish and enrich us is equally valuable.

Consider in your own life…

• What ‘chatter’ might you need to turn the volume down on in order to support you and your family’s well-being?

• What is a something you’re finding difficult to say no to? And how can you re-frame the ‘no’ into what you are instead wanting to say ‘yes’ to?

• Where might you be assuming someone is acting out of anything but good intention toward you? Take time to consider their perspective and see how an action that is upsetting you might be done with their best intentions. Keep love flowing today.

• What would it look like for you invite love, support, care and positivity into your life where you most need it?