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The Cystic Fibrosis Gang

Shortly after dying, a young girl comforts her grieving friends.

By Leanne Hadley, Colorado Springs, Colorado

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While I worked as a chaplain, I also held a part-time job as the youth director at a nearby church, so I spent time with the teens in the cystic fibrosis (CF) unit and with the teens at my church. I assumed that the teens at the church, who had good health, nice families and bright futures, would be happier and more hopeful than the teens at the hospital, who struggled daily with a disease that had no mercy. I was wrong. The kids at the hospital were amazingly upbeat and hopeful.

I called the cystic fibrosis kids the “gang” because I rarely found one of them alone. They treated the unit as their clubhouse. They watched television together, played Ping-Pong in the lounge, and sat on each other’s beds, talking, laughing and flirting with one another.

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The only time I could ever determine the toll the disease had on them was when one of the gang would die. These teens knew death was a possibility, and while the doctors worked hard to do all they could to extend their lives, every year one or two of them would die.

I remember the first time I was called to the unit because one teen was very ill. I walked in expecting to see the gang playing Ping-Pong, to smell pizza, and to hear their music blasting in the lounge. Instead, it was quiet. Several kids were in their room with their doors shut—alone. Some were sitting together in their rooms, whispering. None were smiling or laughing.

I went into the room of two of the teens I knew well. They asked me if I knew Julie was very sick. I told them I had come to visit her but thought I would check on them as well. They began telling me what had happened and why and how a person dies from cystic fibrosis. They sounded not like the teens from my church but more like doctors with specialties in cystic fibrosis. It was during times like these I realized just how brave and strong these kids were.

I also checked on the other teens. Most were quiet. They didn’t share their feelings but again spoke scientifically about the disease. It seemed each one was assessing where they were in the course of the disease and trying to figure out when it would overtake them.

After visiting all the teens, I walked to Julie’s room and peeked in. Toni and Julie’s parents and relatives were still there. Julie’s mother was now seated next to her and resting her head on the bed. I wasn’t sure if she was sleeping or praying. I didn’t introduce myself. I did pray, though—a prayer of strength and courage for all who had gathered in Julie’s room.

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The next day Toni called to tell me that she wasn’t coming in. “Hey, Leanne, I am wiped out. I was with Julie and her family all night. She died peacefully early this morning.”

“Yeah,” I replied, “I heard she had died. You sound exhausted. Can you go to bed?”

“I want to, but someone needs to check on the kids in the unit. Do you have time to check on them?”

“Of course I do!” I said. “You sleep. I promise to check on them.”

I knew the teens needed to express their feelings after the death of their friend, but I also knew they would need help getting started. As I left for the unit, I grabbed a box of markers and some paper. When I arrived, I found most of the teens, seven of them, sitting in a circle and talking quietly. They looked in shock. I placed the paper and markers in the center of the circle and invited them to draw. I explained that they needed to get their feelings out, and sometimes drawing could be an easier way to express them than using words.

Touching Heaven book coverIn addition to authoring the book Touching Heaven: Real Stories of Children, Life, and Eternity, Leanne Hadley ministers to children and families at the First United Methodist Church in Colorado Springs, Colorado.  She is also the president and founder of First Steps Spirituality, a nonprofit organization that provides hurting children with spiritual support.