How to Live with Cystic Fibrosis

Our sister, Amy’s obituary gives the nuts and bolts of her life, but it doesn't begin to describe the real Amy- the daughter, sister, wife, aunt, or friend that she was to us.

Amy’s life started in a special way with her birth on Christmas Day, 1964. She was a beautiful healthy baby with parents and 2 sisters who were totally delighted with her. Unfortunately, early on it was evident that she was not the healthy child we all assumed her to be. After being ill many times, Amy was diagnosed with Cystic Fibrosis at 6 months, and our world was turned upside down. Doctors and nurses became not someone only seen for a yearly checkup, but a constant presence in her life. Often times, they became close friends that she stayed in touch with through email and Facebook.

In many ways, Amy was the perfect patient. Even as a very young child, she didn’t fuss about taking the nasty medicine she had to eat mixed in with applesauce or mashed potatoes before every meal or sleeping in her mist tent every night.  Her sweet personality served her very well as she followed the advice of her health care providers and did whatever they asked her to do.

CF was a very real part of her life, but it didn't define her. Mom and dad could have put her in a “bubble” but they ddidn't They allowed and encouraged her to live a normal life. She played summer ball, was in 4-H, took piano lessons, rode her bike, swam in the pond, had play dates with her friends, rode the 3 wheeler, and was active at church.  She even played the flute and marched with the band. Most people probably had no idea what a miracle and blessing it was for her to do all this because she never complained when she didn't feel well or used her illness as a way to avoid things she didn't want to do.

A sweet, nature- loving boy entered her life when his dad became the preacher at our church. Sparks flew early on between Robert and Amy and by the time they graduated from high school, it was evident they were a match. They were married June 14, 1986, and Amy could not have had a better husband. Robert loved her so well! He encouraged and supported her in whatever she wanted to do and we never heard him complain once as he became, not just a husband, but also joined Karen as her primary caregivers when her medical condition worsened.

He helped her live a fun and exciting life as they traveled all across the United States, including tent camping across the west with Karen and Kim and, most recently, gator riding with Brian, Melissa, and Cameron in the mountains of West Virginia this past summer. She even went parasailing once, something her scaredy- cat older sisters have never done! They spent many happy weekends camping at camp “Could-a-Guy” with the Griffeths and Kellers. Robert also shared her willingly with her closest friend, Amanda, as they antiqued and shopped till they dropped.

Even though Amy and Robert were unable to have children of their own, Amy was a baby magnet. She was crazy about her nephews, nieces, and the children of her friends, and the feeling was mutual. Most recently, she showered love and attention on her 4 great nieces and the Carr grandchildren.  I’m guessing she is rocking babies in heaven now.

A book could be written about her medical history, and we’re  sure her doctors learned much through her struggles that they will use to help others.  God brought her back from the brink of death many times and we are so grateful for the extra time with her that He granted us. She was eternally grateful to the donor whose lungs she received almost 19 years ago.

Amy was a walking miracle and such an encouragement to others suffering with medical conditions. We saw her smiling face and kind words uplift others many times. We are comforted and delighted that she was able to donate her eyes and someone else is seeing the world through them today. We hope God uses them to make a difference in the world.

Amy’s life is an example to all of us of how to wring the best out of the good days and face the difficult ones with dignity and strength.  She was dearly loved and will be sorely missed until we join her in heaven.