Iskra Johnson

In March I was asked to participate in a Learning Community event at Seattle Children’s Hospital for non-direct care, non-clinical staff, to learn about ways to manage and express their emotions or reactions when hearing stories from patients and patient’s families.

I was one of two parents who was asked to tell her story. The rest of the participants came from a variety of jobs in the hospital. There were clinic schedulers, clinic supervisors, people from the insurance processing department (who participated via webcam from another building), continuous improvement personnel, a hospital chaplain, and others. A social worker from the Family Support Team led the event and she asked me if I would also create a writing opportunity/exercise for everyone.

The format of the event included hearing from everyone in the room about what their position in the hospital entailed and what they hoped to gain from today’s event. There were more than 20 people in the room and more via webcam. I was stunned at the desire and need that these dedicated people were expressing.

Some of the comments I heard included:

“I hear so much frustration from the parents when insurance won’t cover a needed treatment or medicine.”

I feel: “…sad”,”…overwhelmed…”, “…angry…”, “…frustrated.”

“How do I control myself from crying?”  Others said, “I do cry, but then what ?”

People wanted to know how to honor the family’s experience and support their staff simultaneously.

I suggested to the social worker the following ideas before they heard from us parents:

a) they should write down their hopes and fears from today.

Then, while they listened to our stories:

a) encourage them to notice what they are feeling in their bodies, what thoughts come to them, and without judging those reactions, write them down.

As a parent, I was asked to talk about my journey with my child, what I had learned as a parent, and what I wanted others to know about my current and future interactions with them. But first, I read a poem I had written called Only Serious Applicants Need Apply. It was a conglomeration of feelings and experiences that many parents who have kids with ongoing health issues face. I had written it a few years ago and I felt it captured not only the various roles we as parent caregivers embody, but it also expressed loss, grief, fear, helplessness, and a heightened sensory awareness.

Then, since they had heard from two parents about their ongoing journeys and the struggles and joys we encounter, I asked them to notice again in their bodies what they “carry.” I took them through an inventory of the major areas of the body, areas that we tend to hold feelings and thoughts: head, shoulders, heart, belly, legs, back, etc. I asked them to notice if there was weight in any of those areas, and if so, what sort of image might describe that weight. I suggested they use all their senses to best articulate that weight.

Finally, I asked them to imagine a container for one area of what they are carrying. And again, to describe it in images with color, texture, sound etc.  If they could put the container somewhere for awhile, where would that be? And if there was something in it that’s useful, what is it?

The range of responses demonstrated their considerable engagement in the whole process. Someone wrote a poem where a tree was her container, and the various parts of the tree held different aspects of her. Other images included a basket, a bubble with rainbow colors, a quartz crystal, a snake on velvet cushions and a jewelry box. There was a sense of being “brave” about sharing these images and there was much support within the group for their vulnerability.

At the end, I suggested that people could take 10 minutes before going home to write about their experiences or at night before bed, as a way to help “hold” and acknowledge their realities simultaneously.

Overall, I came away from this experience feeling grateful for the opportunity to both reflect on my experiences as a parent with a child with health issues and to offer others some of the exercises I’ve used to both contain and express these intense feelings. When folks who are not direct care givers want to expand their capabilities within a hospital setting, and when this expansion is about growing as humans, then the care they will give and we will receive, will also  offer more genuine support and honesty.