Hope for a Friedreich’s Ataxia Cure Keeps Fear of the Future at Bay
When my children were born, I had an irrational fear that something bad would happen to me, and I wouldn’t be here to take care of them. As they got older, I replaced that…
Candy Shell Life — Lauryn Smith
Lauryn is a 42-year-old mother of two, one with Friedreich’s ataxia. She’s a native Texan but now lives in Alabama. She enjoys fashion, reading, watching college football, and traveling. Like most 2s on the Enneagram, she loves to be needed and will care for you without thought to her own needs. Deep, meaningful conversations are sustenance to her and her life is all about searching for big and little truths. She writes a monthly column on caregiving for a child with rare neuromuscular illness.
Featured Post
Reflections on the Joys of Parenting an FA Teen
It’s been a while since I have had the courage to write a column. I don’t want to seem melodramatic, but the vulnerability of sharing about parenting a child with FA wipes me…
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I’ve Gone Through the Five Stages of Grief as an FA Parent
According to authors Elisabeth Kübler-Ross and David Kessler, people go through five stages of grief after losing a loved one or experiencing a catastrophic life event. The stages are denial, anger, bargaining, depression,…
FA Makes The Teenage Years Heartbreakingly Difficult
Junior high school was one of the hardest times of my life. Now that my children are at a similar life stage, I recognize that they are struggling, too. When you add Friedreich’s…
We Adjusted Our Daughter’s School Accommodations to Meet Her Changing Needs
One of the first things we did when we learned of our daughter’s Friedreich’s ataxia (FA) diagnosis was to make sure she had all the accommodations she needed in all areas of her…
We’re Learning to Adjust to Our New Normal
Our family has the good fortune to spend summers at a beautiful lake in central Alabama. For the past nine years, my in-laws have had a summer home and they’ve graciously invited the entire…
Welcome to a ‘Candy Shell Life’
“I can tell that you are really strong and that you can take it,” she said. “So I’m going to tell you like it is.” This is the first thing a Friedreich’s ataxia…
