"Paradoxical Lives" by Frank Gavin
When many years ago our son, Peter, was in Sick Kids with an acute kidney and blood infection, my wife and I took turns staying with him night and day. I remember leaving the hospital on Easter Sunday and looking up at the window of his room on the seventh floor and realizing that that room was now our family’s home. And opening the front door of our house twenty minutes later felt more than a little like entering a hotel.
No doubt the experience would have been different and even more complicated had there been another child at home. Still, my experience since then with other parent volunteers at SickKids and elsewhere suggests that what struck me that Easter—that we were now living in the realm of paradox where contradictions and seemingly incompatible realities sat side by side—has marked the lives of most of us. We had unexpectedly found ourselves in a place where we were, among all the various people and professions at the hospital, both least at home and most truly at home.
Peter was never a patient in the NICU, but I can easily imagine that the paradoxical situations in which we found ourselves, e.g. wanting to move him just a bit to find a more comfortable resting position but fearing that this might cause him only pain or disconnect him from something to which he absolutely needed to be connected, must be even more common and acute in the NICU. I wanted very much to be a competent father—and I could see and feel that Peter wanted me to be just such a father—but initially I didn’t even know I could unplug the IV pole and thus carry him, squirming in pain, much more safely to the washroom where I could perform the one task I had been assigned: collect and measure his “outputs” every hour or so through the night. For the first few nights I was next to useless.
Paradoxes abound for families, both in and out of hospital. We simultaneously feel full of hope and close to despair and are alternately resilient and exhausted. Capable of absorbing and applying lots of complex new information one day, we are barely able to make sense of simple instructions the next. Parents and children often labeled as and then expected to be “heroes” find themselves acting or thinking in ways far from heroic. For many, the impossible dream is to live utterly ordinary lives.
Perhaps the hardest paradox to come to terms with is that wonderfully rich, sometimes enduring, and even humour-tinged relationships—with nurses, doctors, therapeutic clowns, respiratory therapists, and, not least, other parents—often grow, directly or indirectly, out of our own and, more to the point, our children’s most painful experiences. Sometimes one parent of a child seeks out or simply finds himself or herself in such relationships while the other parent does not. Another paradox? Or maybe just the simple or not-so-simple consequence of differences in personality.
There are, of course, grimmer, more profound, and more intractable paradoxes than the ones I have described and referred to, paradoxes certainly familiar to all who have spent time in level three NICUs. They elude understanding and even, perhaps, imagination. Still, all of us—healthcare professionals included--would do well to recognize and attend to the paradoxes we and those around us live with and through. We’ll judge (ourselves and others) less and understand more.
Frank Gavin teaches English at Centennial College in Toronto and serves as one of two public members on the Canadian Drug Expert Committee of The Canadian Agency for Drugs and Technology in Health, a body that recommends to public drug plans which drugs should be listed. This essay was written in response to a request from the editor of the Linden Fund newsletter to write about paradox, a topic Frank touched on in his presentation to parents from three Toronto NICU groups in November 2011. Frank was a co-chair of the Family Advisory Committee at SickKids and the founder and chair of the Canadian Family Advisory Network. He received the Volunteer Humanitarian Award at SickKids in 2002 and the Contribution to Child Health Award from the Canadian Association of Paediatric Health Centres in 2008.