As I look back on the few pictures I have of Lora at the age of two, I’m amazed that I wasn’t more concerned about her small size, pale complexion, and a belly that distended farther than it should. She was a happy little girl and so well-behaved and quiet. In hindsight, and in thinking of the spirited young woman she became, I wonder if she just didn’t have the energy or didn’t feel well enough to act out as most two-year-olds do.
After many bouts of congestion and an episode of bowel problems, our family practice doctor recommended having Lora tested for Cystic Fibrosis. I had never heard of the disease and immediately went to the set of World Book encyclopedias that my mom had given us to find out about it. I remember that I was alone in the house with Lora when I read the article. I learned that CF was a hereditary disease and among all the other information that the article contained, the words “average life expectancy of 14 years” burned into my soul like a hot branding iron. From that moment, I knew that my first priority in life was to do whatever was necessary to prolong her life.
The test for CF is a simple procedure in which the child’s arm is stimulated with a small electrode that activates the sweat glands. The arm is then wrapped in plastic wrap and after a few hours unwrapped. The sweat produced is collected and tested for the amount of salt present. I remember the nurse doing the procedure telling me not to worry, that it is a very rare disease, and Lora’s test would probably come out negative.
Positive test results began our journey together. I can’t quite believe it has been almost 34 years since that first visit to the small clinic in Texarkana. Before recent improvements to treatment therapies and drugs, Lora and I spent every morning and evening together on her “patting table” while we completed her postural drainage to clear as much mucous as possible from her lungs. Trips to Shreveport, Louisiana every three months for day long visits with her CF doctor were precious times together even if tiring for us both. Lora has gone through the years first coming to grips with attending school while maintaining her regimen of pills, IV lines, and missed days due to CF. As an adult, she has gracefully dealt with working full time, maintaining insurance coverage as well as just the day-to-day time commitment of taking care of her breathing treatments and physical therapy.
As a parent of a child with a debilitating disease, I often think of others who have to navigate the world of doctors, insurance, and ultimately of the quality and extent of the life of their child. I see, as I’m sure we all do every day, others who are suffering with much greater physical disabilities than what Lora and other CF patients endure. In the end, I am so thankful for what Lora has overcome and that the words that struck my heart so long ago have proven false. I look forward now to her life as a long, happy journey to share with someone new. I’ll just be here in case she needs me again.
This article was written by the mother of our guest author, Lora Whatley.
Now that you’ve heard her mom’s side of the story, read Lora’s story.
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