Let Them Try Out Their Wings

Katie Griffith avatar

by Katie Griffith |

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Happy August! I don’t know about where you live, but here in Alabama, instead of waiting until after Labor Day, school starts early this month. While August doesn’t tend to bring cooler temperatures in these parts, I hope that this time of year will bring not only much-needed routines but also a chance for some new growth to you and yours.

Back-to-school season can be an exciting time. It’s fun to shop for school supplies and new clothes. There is also a sense of normalcy that I crave after summer and its lack of routine. Even if you don’t have kids in school anymore, there still seems to be a feeling in the air of new beginnings.

When you have a child with Friedreich’s ataxia (FA), new beginnings can also tend to produce fear and anxiety. Will the school be easily accessible? Will the teachers be understanding? Will other students be kind and accepting? So many things can feel out of your control.

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My son Noah was diagnosed with FA over three years ago, and since then, he has graduated from high school and completed his first two years at a community college close to home. He decided he wanted to transfer to a larger university not too far from home to complete his college degree.

With that decision came another choice: Would he commute or live close to campus? He decided he wanted to move into an apartment with some friends. I know this doesn’t sound like a crazy decision, as college kids do it all the time. The difference is that he has FA and faces many more challenges than most people his age.

I had to make a choice: I could either encourage Noah and his independence, or I could find all sorts of reasons to try to scare him into staying at home. The thought of Noah leaving was scary to me because of all the unknowns and “what ifs.” I wouldn’t be there to “help” if something happened.

Over time, I came to realize that compelling him to stay was actually worse. I don’t want to teach any of my children to make their choices out of fear. This was a chance for Noah to try out his wings and experience independence like never before.

Can things go wrong? Of course. I’m sure sometimes they will. But an easy life does not necessarily mean a better life. Challenges create chances to grow and opportunities to find out what you are made of.

I love this quote by Erin Hanson:

“There is freedom waiting for you,
On the breezes of the sky,
And you ask ‘What if I fall?’
Oh but my darling,
What if you fly?”

Letting your children try new things can be scary. As parents, we want to protect them from hard and harmful situations. But as I’ve learned in my own life, growth comes through struggle and, often times, through failure.

I want to teach my children to have courage even when they feel afraid. As Mark Twain said, “Courage is resistance to fear, mastery of fear — not absence of fear.” Trust that you have prepared them well. Now, even in the midst of our own fear, we can give our kids a chance to test out their wings.

What if they fly?


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.


Michael R Long avatar

Michael R Long

Katie I enjoyed your story regarding your son and your thoughts of motivation. I too live in Alabama. I also have FA as a late onset 32 yrs. Old. I feel like I'm fighting a battle alone even though I have a older sister with FA as well. It seems like we have different symptoms leaving me in a different way? I'm 63 now and would like everyone else a fix it pill lol.

Katie Griffith avatar

Katie Griffith

Thank you for reading, Michael! Hope you’re staying cool. I am sorry you are feeling alone but am so glad you are part of this FA community! Hoping and praying a cure is getting closer every day.

Karen Drfenbaugh avatar

Karen Drfenbaugh

Katie, beautiful article. As the grandparent of children with both Down Syndrome & Autism, we have many of the same concerns for them & pray daily for them to have every opportunity to grow & be fearless of life & for folk to be kind, understanding & supportive. Praying for Noah & know he is going to do great! Love you all!

Katie Griffith avatar

Katie Griffith

Thank you for reading, Mrs. Karen! I know your heart is in the same place as mine for your sweet grandbabies. They are precious and deserve all the best life can offer!


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