What Jenna Left Us

The death of a young student is one of the most challenging and heart-wrenching experiences that a school community might ever encounter. The range of emotions that affect classmates, parents and staff members requires understanding, sensitivity and leadership. Through such a horrible situation, though, there are countless opportunities to help youngsters practice compassion and to bring a community together to support one another and the family in crisis.

We first heard of Jenna's condition shortly after kindergarten registration in April at the Ralph S. Maugham School in Tenafly, N.J., where I have served as principal for more than 18 years. Jenna, a most enthusiastic preschooler, was hospitalized after symptoms revealed that she had an aggressive and inoperable brain-stem tumor. Reports of her hospitalization and coma left little hope of survival. However, she rallied over the summer and, miraculously, was ready to attend kindergarten.

Jenna had been given the label "chronically ill" and would be deemed a "classified student," entitled to special educational services -- e.g., nursing care and physical therapy at school. A case manager was assigned to coordinate the services she received. Still, my colleagues and I decided that before Jenna walked into the classroom, we first wanted to prepare her classmates for what they would see -- a sweet, adorable little girl with a small hole in her neck (from the tracheostomy) accompanied by a nurse who would administer tube feedings in the classroom.

Her classmates, won over by her friendly, accepting nature, greeted Jenna cheerfully and were undisturbed by her whispered utterances. By the end of her kindergarten year, Jenna's condition improved. She was, it seemed, "beating the odds."

Despite our hopes and wishes, however, no one could deny the downward spiral we began to notice in the winter of Jenna's 1st grade year. She now felt sick most of the time, yet she still wanted to come to school each day. After several medical treatments failed to reverse her decline, Jenna underwent chemotherapy. When it became clear that she was losing her beautiful, long brown hair, her ever-sensitive teacher declared a "crazy hat week," so all children would wear hats to school. Everyone had fun!

Jenna's teacher always tailored classroom activities so that Jenna could remain a full participant. When it came to decorating a picture frame with stickers, for example, an aide from a neighboring classroom sat beside Jenna and asked her where she wanted each sticker placed to complete the project to Jenna's satisfaction.

Bracing for the Inevitable

That spring, Jenna's condition worsened and she was no longer able to attend school. Confined to her bed and now on a respirator, she still had visits from classmates, teachers and other friends. As she slipped into a coma, the eventuality of Jenna's death seemed certain. A great sadness came over the entire staff.

Jenna's case manager arranged for a social worker from Cancer Care to speak with us one day after school. Teachers asked what they should tell children who had their own questions and fears. This session helped the staff to collectively explore feelings, attitudes and strategies for dealing with what now seemed to be inevitable.

We realized that we would need to convene the Crisis Response Team as soon as we received word about Jenna's passing. This group of predesignated individuals -- the principal, secretary, key parents, social workers and the school nurse, among others -- is responsible for coordinating information and support in the event of natural disasters or other crises in the school and community. The death of a student was a challenge we had never anticipated.

Through our research and discussions, we decided that it was best to answer children's questions simply and factually. We assembled a "library" of resources in my office. Jenna's teacher told her classmates, who wondered if she would ever return to school, that Jenna was very sick and did not seem to be getting better. When asked if she might die, we said, "Yes, that is possible." We did not provide more information than the children seemed to require, but we did honor their questions and concerns and kept lines of discussion open.

This is the basic information we provided:

• Jenna has a brain tumor. (We explained in simple terms what that is.)
• She is very sick now, and it does not look as though she will return to school.
• What happened to Jenna hardly ever happens to children; it is extremely unusual.
• Her condition is not contagious.

We were alert to fears that the children might have about their own health. I called local pediatricians to update them about Jenna's situation and to express the possibility that some of their patients might be unduly concerned about lumps, bumps and other conditions that could prompt children to think that they, too, might be in danger.

The "Awesome" Day

Just before dawn on a morning in mid-May, I received a call from Jenna's teacher informing me that Jenna had died during the night. The Crisis Response Team convened immediately. We were all in this together, and we knew that our goal was to ensure that the children, the staff and the members of the parent community were provided with accurate, helpful information and the support needed to deal with this tragedy.

First, we established the facts as we knew them: Jenna died peacefully in her sleep at about 3 a.m.; the funeral would be the next day; Jenna's parents welcomed all who would like to attend. Three guidance personnel would be available throughout the day. At least two people would speak with Jenna's classmates: their teacher and a psychologist. We identified children in the school who might be emotionally vulnerable because of their closeness with Jenna or other experiences with death that might be rekindled by this unhappy news.

We also discussed arrangements for closely connected staff to attend Jenna's funeral and arranged coverage for these individuals while they were away from school. We drafted plans for what to tell the whole staff and developed a list of "key communicators" who would be available to dispense information and contact support personnel as needed.

Before the opening of school, we provided all teachers with a bulletin outlining the sad turn of events. Teachers chose whether they wanted to conduct conversations with their classes alone or with support from guidance personnel. We outlined what to look for in children for whom this news might trigger other forms of grief.

Finally, we asked parents to call the school office if they witnessed any extreme reactions on the part of their children and to seek assistance from the support personnel who were made available to help us. We reinforced the fact that, as time passed, children's reactions might change and new questions might emerge.

As Jenna's teacher remarked, there are many meanings for "awesome," but the term aptly describes how her schoolmates spent the rest of their day after we announced Jenna's death. The initial reaction to the news was a long silence. Clearly, we had prepared the children for this eventuality. The youngsters began to discuss their fond memories of her in class. Through the halls, we could hear the children singing songs that Jenna loved, including Louis Armstrong's "What A Wonderful World." We used the occasion to celebrate Jenna's spirit and contribution to the classroom community.

Her teacher set up a special corner of the classroom, called "Jenna's Wall." Children drew pictures of the things they had done with Jenna, wrote notes to her and her family, and posted "artifacts" representing her influence on the class.

We later created a permanent school-wide tribute on a retaining wall behind a play structure. On November 5, the day that would have been her 8th birthday, we gathered the entire school in front of "Jenna's Wall" for an official dedication.

Jenna was the most valiant child I have ever known. She brought out the best in people and helped us to see how we could go on -- to grow and to learn despite tremendous obstacles -- and to have fun along the way. All of the children in Jenna's grade experienced the reality of death. Many came to understand death as part of a life cycle. They learned that we can live while dying.