My dad’s perspective on 2 of his 3 children living with FA

From its start, this column has mostly focused on my own reflections and experiences with Friedreich’s ataxia (FA). Although firsthand perspectives are important, navigating a condition like FA isn’t a solitary effort. That’s why I’ve been asking my immediate family members to share their thoughts. My columns have featured my sister Morgan, who has FA like me, and my sister Mckenzie, who does not.

Today, I present the perspective of my dad, Freddie, who offers a glimpse into the mindset of a parent who has two children with FA.

My dad’s perspective

Now that I am 64 years old, I tend to reflect on my life and recognize its blessings, especially the ones that are unexpected. Without a doubt, I know that being a parent is one of my life’s greatest blessings.

When my wife was pregnant, a common question from friends and family members was, “Do you want a boy or a girl?” My patent answer was, “It doesn’t matter, as long as the baby is healthy.”

I am fortunate to be the father of three amazing adults, Matthew, Morgan, and Mckenzie. Matt and Morgan happen to have Friedriech’s ataxia.

I couldn’t believe it when they were both diagnosed in elementary school. Just like Matt and Morgan, I was overwhelmed by the increasing challenges that FA brought.

How could two of my perfectly healthy children have a progressive disease with no cure, and soon be wheelchair-dependent?

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My heart hurt as I watched them struggle to do simple things like write, hold a fork to eat, and transfer to and from their wheelchairs.

Over time, I learned that having the courage and determination to combat this rare disease makes all of us better people — obviously Morgan and Matt, but Mckenzie, too. And maybe me as well.

Even though children mostly learn from their parents, watching each of my three children experience their “little victories” and grow into fully functioning adults has been fascinating and enriching.

Readers of this column know how talented Matt is. His intelligence and writing skills amaze me with every column he writes. And, by riding his recumbent trike, he keeps himself in shape and raises money for the Friedreich’s Ataxia Research Alliance. He has taught me much about determination, perseverance, and having a positive outlook on life. [Note from Matt: I paid him to say this.]

Morgan has taught me different lessons. When she got married, I recommended that she not have children. I thought it would put undue strain on her body and speed the progression of FA. She thanked me for the advice, then proceeded to have three children. Watching Morgan help her kids with homework, attend their extracurricular activities, or hold them as they napped as babies, makes me realize how wrong I was to recommend she not have children. I tried to deny her the blessing of being a parent that I am reflecting on today; shame on me.

Although my youngest child, Mckenzie, doesn’t have FA, watching her older brother and sister grow up with FA created its own challenges. Her willingness to always help her siblings has imbued her with a kind heart and a smile that lights up every room she’s in. She and her husband and two children have taught me how important and supportive family can be.

All three of my children have taught me lessons that I will cherish forever. They have shown me that obstacles can be overcome and that with persistence and determination, combined with love and understanding, we can accomplish whatever we set out to do.

I remember what I said when my wife was pregnant, about whether I hoped for a boy or a girl: “It doesn’t matter, as long as the baby is healthy.”

I’ve come to learn how wrong that answer was. My answer should have been, “It will be a blessing whether it’s a boy or a girl, healthy or not.”

Thanks for the blessings, Matt, Morgan, and Mckenzie. I am fortunate to be your father and I hope to have many more years of loving you and learning from you.

Matthew’s thoughts

Thanks so much, Dad.

You’ve touched on an idea I really struggle with — whether FA is a blessing.

Of course, it’s not. It’s a gross misalignment of genes that leaves death and disability in its wake. Too many friends and too much of my independence have been taken for me to consider otherwise. How dare someone claim it is?

But you wrote that dealing with FA is the source of blessings, not FA itself.

I think that’s fair. That feels right.

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.