Care in context

I glanced at my clock and saw that it was ten minutes after two in the afternoon. I grabbed my coat and stepped outside to wait for the school bus. Within a few minutes, the bus pulled up, and the driver stepped out to prepare the wheelchair lift. As she worked, the school nurse stepped out behind her. He was new to our family, and this had been his first day with our girls. We had met briefly in the morning, but due to the timing of the bus and school schedules, we hadn’t time for more than quick introductions.

Trusting the care of others

Moments like these always remind me of how much trust is required of Ontario parents and caregivers when their children need nursing support at school. In our case, with the local Catholic school, a contracted nursing agency provides one nurse to support both girls throughout the day. That nurse rides the bus, remains with them at school, and follows a very defined scope of practice. Their responsibilities include checking the girls’ vitals but it does not include (and therefore does not allow for) pushing their wheelchairs down the school hallway. It’s that specific.

Because the system doesn’t allow parents to meet and discern ahead of time who will be caring for their children, we hand over a great deal of trust to the powers-that-be. The assignments of staff shift constantly due to system fractures and a limited supply of nurses. Monday’s nurse may not be Tuesday’s, and neither can tell me if they’ll be here Wednesday. Thankfully, over the years, we’ve encountered skilled and compassionate caregivers, and from what we can see, Rachel and Janneke adjust well to the rotating cast of helping hands.

Balancing act

As the new nurse stepped off the bus that afternoon, he smiled and walked toward me. He said it had been a good day and offered a clear report on the girls’ activities and health. At one point, Rachel’s blood pressure had read quite low, but he had checked our listed notes and noticed that this was typical for her. He followed the instructions as written. At the same time, he told me she seemed comfortable and alert, showing no signs of distress. The readings mattered, he said, but so did what he saw in real time. That balance, held so naturally in his approach, caught my attention and my respect.

Over the years of learning from different caregivers for our medically complex girls, we’ve come to deeply value this ability: the capacity to hold both the list and the living moment. The results from taking vitals of our girls offer reliable starting points, but they can’t capture everything. Context, such as the girls’ colour and expressions, asks us to notice what’s unfolding in addition to the numbers and respond accordingly. The strongest caregiving, and really the strongest decision-making in any setting, involves a fine balance of both.

Happy New Year. Here’s to holding the list and paying attention, as the days unfold ahead.