Wind and Waves

A few hours from now marks exactly one year’s time since Nora made her entrance in the world. She looked out on us with no judgment. I’ll never forget the first sight I had of her, the relief that whatever else might be wrong, and that she might not be able to do now or ever, at least she could cry! I’ll never forget the power of her birth, and the beginning of our long journey towards acceptance and celebration and joy in the midst of painful mysteries. Those sweet moments with Janelle in the delivery room are memories I carry with me like smooth stones in my pocket. I reach down in and feel them from time to time (for more detail, see Janelle’s excellent reflections accompanying this document). I will also never forget the moment, an hour after her birth, when I was permitted to go meet her in the NICU, where I took my first long look into her bright blue and innocent eyes, trying to understand that this child was mine, and where I learned the first, long list of unusual and inconclusive findings which might hold the keys to a horrific destiny for our family or might fade in importance. I can’t forget the blackened forms that filled my mind when my eyes closed for the first time later that morning. The year that has passed between then and now has been, without question, the longest year of my life. There are parts of it that I wouldn’t wish on anyone, but now we have come too far for me to wish any of it away.

Was it good timing or was it not for us to participate in a retreat organized for the Initiative for Pediatric Palliative Care this past Sunday, Monday, and Tuesday? I suppose I can’t know what not going would have been like, but I feel so glad to have been there.

If I understood it correctly, the intended purpose of the IPPC retreat was to advance the cause of compassionate, competent, and family-oriented care in the context of life-threatening illnesses in children. What became so apparent to me throughout the event was that the people behind this initiative “get it.” They get the difference between doing medicine “right” and doing it “well.” They get that each action that is taken, each person involved at such a time as the death or illness of a child is connected to all the rest. They get that caregivers are human beings who have untold and underutilized powers of creativity, as well as the capacity to make mistakes. They get that families and patients who are afforded respect may have the capacity to surprise, forgive, contribute, and even offer enrichment. They get that we need each other’s help to provide for children in these situations. They get it that the barriers to improvement are daunting and discouraging. They are watching those barriers slowly crumble.

Have I ever before been in such a fertile ground? I felt I was engaged on so many levels, in so many ways. I was engaged as a listener, as a science nut, as a poet, as a spiritual being, as a citizen, and always as a grieving parent. I was there to offer my experience with the medical system, and offer it I did. Perhaps I was simply unprepared for what the experience had to offer me, not the least of which was the sense of sheer gratefulness for how well “the system” (a few key individuals who “get it” made all the difference) did perform for us (especially when compared to others’ experiences). The beauty of our experience in the middle of one of the most technologically and scientifically advanced medical institutions in the world is testament to the truth, namely that the approach put forward by the IPPC has the power to transform the arena of loss for families.

Perhaps it is incidental to the intentions of the retreat, or perhaps it is part of the whole, but I find myself periodically immersing over the past twenty-four hours in reveries of contemplation concerning the spirituality of medicine. Both Janelle and I come from medically connected families, so recognizing medical professionals as whole people full of the same human potentials as all of the rest of us comes very naturally for us. In any case, I am finding the notion of medical facilities as spiritual places and medically connected professionals as spiritual co-creators with the rest of us to be compelling in the extreme. People who know me might know that I don’t talk about spirituality much these days, because I find many conventional spiritual forms largely empty of meaning, and because I find their tendency to value ignorance dispiriting. Participation in honest and unassuming searches for truth is vital to my sense of wonder, which is why I find so much inspiration in my admittedly amateur and casual pursuit of scientific understanding. In a way, using the word “spirituality” for what I am talking about may be misleading to some, and they may find more truth in replacing it with the word “meaning”, or the phrase “meaning-making.” But for me it is not an inaccurate designation, because the swells and currents I sensed among us seemed to be occurring at levels we would all struggle to define, and the life and death passages of children and their families compel us all to handle our most cherished values and notions, and carry us far beyond our abilities to control or comprehend.

I wrote the following poem this morning:

Surf

For those who care for dying children

Mine was
a swamp I had to traverse (I am
still wiping the mud from my eyes), but you do
this every day, and then you have
to go home and eat
your dinner.

It must come on you like waves, lapping, tumbling, crashing
even; never resting. And so maybe you are one of
the rocky ones, hardened against the breaking water, protecting your
shape, preserving the mainland. Or are you are the sandier
shore? Do you allow the waves to change
you?

Here is something I believe about you: no matter how you
bear the surf, there must be a place in you where a little water
collects. I wonder: have you ever, when the tide is low, gone there
and taken notice of how beautiful that pool can be?

Perhaps sometime we could go walking together, exploring the
crevices or scanning the sand, stooping to retrieve those
curious and delicate
treasures the waves have
brought.

Jason Myers-Benner
October 29, 2008