My sister, who also has FA, finds strength in her family
Our coping mechanisms may be different, but both are valid
I’m realizing that a Friedriech’s ataxia (FA) diagnosis is a family affair, and the stories I tell in my column, “Little Victories,” typically offer only one perspective.
I tried to broaden that view when my sister Kiki shared her perspective in my column last month. She is the only sibling out of the three of us who doesn’t have FA.
But it’s also essential to share my other sister Morgan’s view. Although we have the same diagnosis and are from the same family, we have different ways of coping with this progressively debilitating rare condition. I tend to value books, poetry, exercise, and introversion. Following are Morgan’s thoughts on coping with FA, lightly edited for clarity.
Since I was born, I’ve been copying my brother Matt. I even copied his DNA, since we were both diagnosed with the genetic condition Friedreich’s ataxia. In a lot of ways, I follow him in finding ways to live with FA, from purchasing and riding a recumbent trike, to becoming a patient ambassador for the Friedreich’s Ataxia Research Alliance, to signing up for personal training at an adaptive local gym called Train Unique.
But beyond that, we each have our own story.
My way of dealing with FA is [by drawing] strength from others in my life, mostly my family. I couldn’t ask for a more supportive family than the one from my childhood. Ever since I was a little girl, I had a strong desire to be a wife and mother.
In high school, I started dating Damian, aka Val. Even though all he knew about my FA was that it was going to get worse, he still asked me to be his wife. Fifteen years later, I am blessed to be doing life with him!
I was ready to start growing my family, so it felt like a blow when quite a few doctors discouraged me from trying to become pregnant, citing all the possible risks to my body and the likely worsening of my FA symptoms.
Maybe I’m just as hardheaded as my brother, because despite those doctors’ warnings, I now have three beautiful children. [They] have become my main reason to keep fighting FA, no matter the obstacles or difficulties.
While I am sensitive, emotional, and high-strung, my 12-year-old, Andrew, is a young man of few words and would defend me no matter what.
Next, my beautiful daughter, Kaydi, is 5, hilariously overdramatic, and the sweetest soul you will ever meet. She’s a little lady filled with big emotions — just like her momma!
Then there’s Gabriel, [who’s] 2 years old and such a blessing (98% of the time!). His delivery was actually much more complicated than Andrew’s or Kaydi’s. During Gabe’s birth, my body retained a lot of fluid and my blood pressure skyrocketed. Since I already had cardiac issues due to FA, I went into congestive heart failure. I didn’t have preeclampsia at all while I was pregnant, but I had postpartum preeclampsia after I delivered — highly unlikely but severe. But since FA, I’m used to highly unlikely, severe diagnoses.
We all survived that scary situation, and Gabe, my caboose, is incredible. He completes my family!
My heart breaks every time I can’t do what I think a “normal” mother should do for her children, and I fear my FA forced them to grow up too fast. But instead of always sinking into depression, I recognize that even though my children may have had to grow up quickly, they are all amazing, compassionate, independent, and giving members of society.
So I’m glad I chose to have my family. FA tends to make existence hard. My husband and my children give me the strength to keep going.
I am proud that you’re my sister, Morgan.
FA’s ruthless and unpredictable progression is terrifying — to me, to you, to our family, and to everyone with the condition. You remind me that there are many solutions to the same difficulties.
And if you ever have any doubts about your impact as a mother, I think you’ve already typed out what really matters. While you may doubt your ability to parent, you’ve stated that your kids are “amazing, compassionate, independent, and giving members of society.”
Do you know what kind of people say that? Good mothers.
I’m thankful that you’ve found a path through living with FA that is totally different from mine. I hope it’s clear to everyone with FA that there’s no single path that leads to a good life. A good life is whatever you make it.
Sometimes that looks like a literary loner. And sometimes that looks like a good mother.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.