by Pamela Taylor

Created on: February 26, 2009

When you live with a chronically ill child, you learn a lot about who you are and how stong you are. When you live with three chronically ill children, you either find your faith or lose you religion. There are times I fall in both categories.

My children bring me more joy than anything in the world, but almost the most worry. My children have a genetic disease called Cystic Fibrosis or CF. CF is a disease that affects many organs including the digestive system, sinuses and the most devastating, respritory. I have seen my children so sick with this disease that I would be afraid to go to sleep at night. I have kept bedside vigils and endured long hospital stays with my children so they would never be alone. This is my job as their mother. But more than that, it is my purpose.

There have not only been bad times. One thing you learn about living with disease, you appreciate the good things a whole lot more. If we can go several months without a sickness or a hospital stay, we never take this for granted. We are always thankful. When my oldest daughter was a baby, I had a niece born around the same time and several cousins. I remember becoming almost bitter at these mothers. They would call and complain about the sniffles or being up all night with a teething toddler, just basic things that all new mothers have to go through as sort of an initiation into motherhood. I would think about how many breathing treatments I had to give through the night, about how I needed to find new ways to put medicine in my 8 month old to try to keep an infection from spreading, or when our next hospital stay would be. I could not relate to my family and they couldn't relate to me.

When my second daughter was born with this same disease, we were of course devastated. My husband was a deacon at our church at that time, and I was a Sunday school teacher. These were jobs that we were called to do and we both loved and enjoyed. God was a strong point in our lives, but sometimes, frankly most of the time, we couldn't understand why this was happening to us. My second daughter hasn't seemed to have the severity of the disease as my first daughter, but I could never just find true joy in raising my family because there was always a nagging feeling in the background of gloom and uneasiness.

One night me and my family were sitting in revivial at our church. The service was great and for once the girls were sleeping so I was getting a chance to actually listen. I remember very vividly looking

• 1
• 2
• Next Page >>