The Cystic Fibrosis Gang

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

By Leanne Hadley, Colorado Springs, Colorado


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.

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Dear Reader; It was November 1972. My little girls were 4 and almost 6.They had a cousin who had just turned 7. Shortly after his 7th birthday,I had to explain to my little why their cousin died.I wasn't sure if they understood.I watched them play 1 night.They had a box.They put a blanket in it.One of them crawled in the box and said to the other:I'm Mikey,you come to see me at Jack Henry's(funeral home here at that time) before I go to heaven." In 1978,we had to do it again as Mikey's little sister died.Your story about these teens really touched me as that is what my niece and nephew died of as young children.

Thank you so much for all of the emails you send me you are such s blessing to me.

Erainer Patterson. My son, Jonathan, died on March 18, 2007, of a heart attack at age 17. A few weeks later, I saw him in a dream and he handed me a typewritten letter indicating what all he was doing to keep busy in heaven. The dream was so vivid that I woke up immediately after looking for the letter so that I could read it.

Not long after that, I went to bed missing him and wishing I could kiss him just one more time. During the night he appeared at the side of my bed wearing not the white suit he was buried in, but a t-shirt and jeans with a brown belt. I saw him clearly from the neck down but not his face. I put my hand on his face and was able to kiss him on his cheek.
I got my wish after all. My son lives in Paradise just like Jesus promised, and I know I will see him again when my time comes.

In late 1985 my dad had been in hospital ICU for nearly a month but that night the doctors said we could take him home on Christmas Eve. My brother and I had been 'taking it in turns' so that Dad was never alone but that night after we got that great news, he shooed us out telling us to go have dinner. While we were out, he died.

When we got back to the hospital the staff met us at the door and gave us the awful news, then took us to a quiet room where his body was on a guerney; first my brother then I took a moment alone with his body to say our goodbyes.

When I put my hand on Dad's shoulder and leaned down to kiss his check, I closed my eyes and immediately saw my dad and his late wife (my wonderful step-mother who'd died five years earlier) walking hand-in-hand in a beautiful garden by a sailing pond. There were many other people in the garden including children happily setting small toy boats into the pond. The details were very intricate - for the brief moment I saw them and the others in that garden I saw hundreds if not thousands of details. The colours of every detail sharp and quite vivid, and the sense of peace and happiness was so strong.

I can still see it now in my mind's eye. I'm so glad for the teens who've been granted this blessing, especially for the one who found such reassurance.

When I was growing up we had a dog Lucky we got him when I was 5 or 6. In 1982 I was 18 and Lucky was getting up in years and was sick so my father took him to the vet on a friday. What my father didnt tell us was that Lucky had heartworms and it was fatel and the vet sent him back home with some medicine. Monday my father took Lucky back to the vet he had trouble breathing and was throwing up so my father decided not to let Lucky suffer anymore and put him to sleep. I was working and when I got home late I found out what happen and to say I was upset I didnt get to say goodbye. I fell asleep crying and I had the most weirdest dream. Lucky was in a beautiful meadow running around and he saw me and started to run toward me and I knelt on the grass and I could feel his fur and his kisses and then someone was standing beside us and this person had a white dress? robe? on and all I saw was a pair of feet in sandels and the person said 'Lucky will be all right". The next morning I told my parents and they thought I was dreaming but sometimes I wonder

See, you were dreaming.

After my son Alan died I had a vision... he was wearing a white karate suit. in a meadow with beautiful flowers happy and sister Bunny told me the next time I saw her that she had a vision and described to me the exact same vision including the white karate was amazing...

This would lend itself to being proof only if Alan wasn't into karate. If he was then it would make sense why she and her sister would remember him like that in their dreams.

I can't imagine the pain of losing a child. My deepest condolences.