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 out emotionally, and I tend to be down for a few days afterward. Writing about it…
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 worry with the fear that something would happen to them. As they became more independent and…
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, and acceptance. When our daughter was diagnosed with Friedreich’s ataxia (FA), I began a grieving…
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 ataxia (FA) to the equation, the teenage years seem downright unbearable. Having a physical disability makes…
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 life. Since she is still in school, this included working with teachers and administrators to come…
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 family to gather there each weekend. Since the lake is less than an hour from home,…
“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 parent said to me when we first met. She had lost her son to FA a…
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