Treatment & Kids | # 3 Dealing with Disappointment

Reality can kick us hard sometimes. It can hurt, disappoint, injure. The cancer journey can give us a pounding. How do we rise to face reality and equip our kids with the courage to do the same?

Sitting on a precipice is starting to become familiar territory for me. Yet, I cannot say I am completely comfortable with my position here. I’ve never been good with heights, and I often get the same feeling, a deep discomfort in the pit of my stomach, when I consider the unknown, the fog obscured future.

When I signed up for this treatment trial in March this year, I had no control over which treatment arm I would be selected for. To me, Arm A represented newer drugs with greater efficacy, and less side effects, as well as a much less arduous treatment regime. Arm B represented a higher risk of scary side effects and a complicated first few months that would be logistically demanding on our family.

As the days ticked down to the day of determination, I felt that, hiding in the fog, were two unknown creatures, one friendly, the other foe. And I just had to sit, watch and wait to see which would emerge.

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Sitting in that discomfort I was aware that what emerged would not just impact me. The impact of the trial arm was a whole family affair. Arm A was a daily pill. Arm B kicked off with a hospital stay and weekly infusions. I’m not sure I succeeded in keeping my preference to myself… I was hoping and praying for Arm A for many reasons and the boys knew it.

Disappointment is Difficult

But it didn’t eventuate and Arm B, the one I feared, was the card drawn. I was deeply disappointed. That day, a Friday, I had four hours to myself. Four hours before school finished and I faced the inevitable question from my boys… “which one was it mum?”

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How was I going to answer? Was I going to invite them into and overwhelm them with my disappointment and fears? Was I going to mask my emotions and “keep calm and carry on?” Could I conceivably answer them with honesty, vulnerability, and hope?

In addition to my disappointment, I was once again facing my greatest weakness, my own mortality. My need for drugs to keep me alive. My lack of control and choice in the process.

Four hours is not long to work through all of that. But with intention, it can be done. For me, the key was acknowledging the problem, the hurt, the confusion and the fears. I didn’t want to give power to the problem, but I knew if I buried it, it would permeate my thoughts and actions and continue to cloud my perspective in the days to come. So in those time-ticking four hours I got really real with God: I sobbed, I cried, I questioned, I slept, I shared, I wrote, I reconciled.

And then I drove to pick up my boys, and, having somewhat dealt with my disappointment, answered the question that tumbled out of each of them in turn. With an authentic hope that I had received from heaven.

I don’t want to minimise how hard that day was.

Looking into my kids eyes, I knew they too were disappointed. Less so because of the potential implications I was fearing, more so because they knew my hearts cry wasn’t answered the way I had wanted. They were now watching me and how I continued to deal with that disappointment.

The Hard Hits

This is difficult. Processing our disappointments is not easy. Processing disappointment and unmet prayers with children adds further layers of complexity.

We want our children to grow up with a sense of hope, possibility and freedom - undeterred by the hard knocks of life. As adults, we’ve all taken some solid blows, and that disappointment and pain can scar us and reduce our lives to the limits of our perceived safety.

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So when we’re taking the inevitable stomach punch, do we shield and protect our children from it’s raw reality? Do we allow them to witness the struggle, the wrestle, in the hopes that they’ll also be on the sideline to see the evidence of courage, strength and determination as we rise from the floor once again?

Reality can disappoint us. Regularly. And also disable us if we let it. But it doesn’t have to and I believe this is what our kids need to see. That we can take the hits AND come back from them, maintaining our dignity, our grace, our enthusiasm and our hope. As we raise and release our children, they are going to find life can be full of disappointment, unanswered prayers, and their youthful optimism will be refined by the friction and pressures of life. I haven’t yet discovered a way to avoid the hard hits; has anyone? Therefore, one of the greatest gifts we can give our children is the tools to rise again and again and again.

So in some ways this cancer journey is a blessing. Yes it sucks, it’s “unfair”, it’s cruel, and hard and disturbing and debilitating and discouraging … Yet, it also becoming my testimony; an hour by hour, day by day, month by month a way for me to demonstrate to my children courage, strength, faith and hope as I rise up from each blow. Sometimes I take longer to get off the floor, other times I bounce back vigorously. They get to see this, they get to watch and observe, learn from and participate in it.

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Obviously, I’d love to have a different story to walk out with them. I’d love for their childhood not to be marred by the “C” word constantly hanging over our heads. But this is our reality. It’s raw, it’s real and it has the power to make or break us. We might not be able to do much to change it, but it is up to us how we choose to respond to it. Do we keep beating ourselves up with it, or do we fight to protect what is important to us?

I realised the day of the Trial Arm selection that we had all been hanging on to a thin tenuous thread, as though a Trial Arm could determine our reality. Sure it would have an influence and impact, but our reality is based on so much more than a drug cocktail or a logistical dance. The fullness of our reality is founded on trust, faith, hope and love. And we have an abundance of these.

Rising Again

It is important to me that my children have a strong faith and an indestructibly hopeful spirit. As we walk out this struggle, Anton and I get to hold their hand, guide them through the pain and disappointment, equipping them for their own journey ahead. And as we walk it out together, the most important thing I hope they learn is that they they’re never alone. As we grapple with the hard-hearted face of reality, we are never alone.

I couldn’t do this without my faith. Without knowing I am never alone. This is what keeps me hopeful. This is what keeps me rising off the floor. Knowing that the impenetrable goodness of God enfolds every aspect of our broken humanity into His care.

I might not understand why I have cancer. I might not understand why my prayer for trail arm A was not answered. I might not understand why there are all the problems we see in the world. I have no sufficient answer as to why we experience so much collective disappointment and pain. I do know that no one is immune or exempt from this stuff. Our world is awash with it, drowning in it. So firstly, I try not to sink into my own disappointment and I also try to walk in the faith where the weight of my burden is shared.

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For me, I know the person I entrust my life to rose with wounds. Knowing that Jesus choose to walk this hard road too is what enables me to live in the precarious space between healing and hurt, joy and disappointment, hope and despair, danger and wonder, broken and whole. This is what enables me to rise from disappointment with renewed optimism and hope and a burning desire to impart that to my children.

Courage, Love and Legacy | Points to Ponder

This has been a difficult blog to write. I’m not sure writing this resolved for me the question I held of how to comprehensively deal with disappointments and difficulties. What I’ve revealed is my hearts cry to discover and walk a path that leads to wholeness despite them. And in all honesty, I’ve realised that navigating this for my own heart and the heart of my children is daily struggle. Yet every morning we rise. I hope in here you found glimmers of truth and of hope that resonate and offer you something that helps you on your journey.

Just as I’ve explored my own process for dealing with disappointment, take time to consider your own way of navigating and rising above life’s difficulties…

• what do you do when reality kicks you down hard?

• what helps you rise off the floor, re-calibrate and keep going? Do you sense a hand outstretched, ready to help lift you up and carry you forward?

• are there areas in your life where you know disappointment has robbed and limited you, where you’d like to regain hope and freedom?

• how do you equip your children to deal with the inevitable struggles of life?

Living With Courage, Love & Legacy

Kylie