The important message about FA my daughter found on a T-shirt
When a girl's clothing choice aligns her with the larger disease community
I love to travel. Being able to pack up quickly and go is something I value. It’s also a skill I’ve fostered in both of my daughters, Katherine, 14, and Amelia, 12. They’ve been able to pack their overnight bags since they were small. I love this level of independence in them. That doesn’t mean we leave the house quickly, but at least we’re packed to do it.
So it was unsurprising that Amelia, who has Friedreich’s ataxia (FA), had her duffel bag filled and ready for summer camp days before she needed to leave. Her father double-checked her selections to ensure she had everything on her list. That included brightly colored shirts from last year‘s camp that Amelia likes to wear as a reminder of a place she loves.
But this column is not about camp or those particular shirts. It’s about another T-shirt.
Packing up the car with Amelia’s walker and bags, my husband, Ryan, was on duty to walk her out to the car. I closed the trunk in time to see Amelia headed toward me holding her father’s hand and wearing her rideATAXIA T-shirt from last year’s event in Philadelphia.
On our long drive to camp, Amelia talked about how excited she was, who she was hoping to see, and all the activities she did and didn’t want to do. Finally, unable to hold it in, I asked Amelia why she chose to wear her rideATAXIA shirt to camp. Amelia tends to be very intentional about her clothing. She always wears items for a reason, and my curiosity was piqued.
Her response was matter of fact: “This is who I belong to.”
What belonging means
I could talk about the value of belonging from a social work perspective (because my profession always seems to blend into my everyday life), but instead, I’m just going to be a mom. As such, I want both of our daughters to feel that they’re part of something bigger than themselves. That there are individuals out there who claim them as part of their community.
Amelia struggled with inclusion from the moment she entered kindergarten. She was left out of games on the playground and was at the end of the class line when moving from room to room. Despite all the best attempts from caring adults, it was a challenge. We heard about it every day through tears those first few years she was in elementary school.
It’s why we go to Friedreich’s Ataxia Research Alliance (FARA)-sponsored events. I want Amelia to know that she’s part of a larger community, a “FAmily.” When we attend the rideATAXIA events, we do more than fundraise and build awareness; we build relationships.
Next week, a small group of people — including Kyle Bryant and former Friedreich’s Ataxia News columnist Sean Baumstark — called Team Himalayas (part of Team FARA) will bike up the highest paved road in the world. Our family will keep an eye on their progress and cheer them on from a distance.
We’ll also wear our rideATAXIA shirts with the FARA logo — not just because we believe in the hope behind the logos, but also as a reminder that those groups are what we belong to. Safe travels, Team Himalayas. Our thoughts, prayers, and dreams travel with you.
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.
About the Author
Comments