To Forever Wonder

Many of us would prefer clarity over mystery.

Recently, I took Rachel and Janneke for their yearly visit to our paediatric neurologist at McMaster Children’s Hospital. Visits like this are long, but the length is intentional. We make time to review everything about the girls – emotional, physical and developmental. Though I need a large coffee in hand, I appreciate the comprehensive family-centred approach.

Pain problems

Rachel was whimpering throughout the appointment, and I mentioned that we were observing more signs of sadness over the last number of months. I was also mindful that each time I have traveled with Rachel to the hospital, she has become agitated. I suspect she has retained the difficult memories of past emergency room visits and surgeries, creating anxiety for subsequent visits.

The neurologist asked a range of questions about Rachel’s pain, but all I could offer was a guess, based on my limited understanding. I know Rachel and Janneke are as beautifully complex as my older two children, with multiple neurodevelopmental systems and senses. Yet both Rachel and Janneke cannot use their words or bodies like their siblings, so I’m often at a loss for what to say when asked, “What seems to be the problem?”  I can’t ignore the fact that I don’t fully know. It’s tempting to decide for the girls without honouring the mystery that prevails in their presence.

Quest for certainty

I think many of us would prefer clarity over mystery. I’m reminded of the New Testament story in John 9 when the disciples encounter a blind man and ask Jesus whose sin caused the man’s blindness. I know of families, including my own, that have worked to find a diagnosis to help provide a trajectory for their child’s development. Beyond the doctor’s office, I wonder about the search many of us have for certainty in discussing theology, understanding relationships or making plans for the future. 

I’d much rather read a mystery novel than live with mystery.

None of us will ever know exactly what happens next, but the mystery that remains with Rachel and Janneke’s care is pronounced. Sometimes that fact brings a sense of wonderment, as if I’m excited to see what’s around the next corner. But sometimes, that reality creates a weight on my heart. It’s the heaviest when I think about what constitutes a meaningful day for Rachel and Janneke. I wonder what the future holds, particularly when I see others celebrate familiar milestones and achievements that are beyond our reach. 

Committing to be curious

To borrow the words of author Keith Dow in his book, Formed Together: Mystery, Narrative, and Virtue in Christian Caregiving, perhaps I too often rely on my “own understanding rather than welcome the mystery at the heart of the Imago Dei (75).” I prefer clarity. I’d much rather read a mystery novel than live with mystery. Yet I know we were created with purpose, so I want to trust in our Creator who says Rachel and Janneke are part of his great design; I want to be surprised by the joy a mystery can reveal.


  • Sara Pot

    The Pot family story includes a life of caregiving for daughters Rachel and Janneke.

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