When our daughter Amelia, 13, was diagnosed with Friedreich’s ataxia (FA) five years ago, I started doing the math. Like other parents, we’d been told that most people diagnosed with FA will need a wheelchair within 10 years after symptoms appear. This, of course, depends on the speed…
As the lecturer’s voice echoed in the large hall, I sat nestled between friends. This was a lifetime before my 12-year-old daughter Amelia’s diagnosis of Friedreich’s ataxia (FA), and before I was gearing up for a life of service, first as a volunteer and then as a social worker.
I both heard and felt the rumbling noise as the elevator jerked to a halt and I was plunged into darkness. Immediately I knew my error and was kicking myself. We were in the middle of a huge storm, and I’d known that a power outage was possible. Yet I…
I found myself growing uncomfortable as I stood in front of the group. Not because all eyes were on me as a presenter, but because I’d realized I was out of alignment. As the parent of a 12-year-old who was diagnosed at age 8 with Friedreich’s ataxia (FA),…
I loved pop-up books as a child. The pieces that moved — delicate structures jumping off the page — captivated me, as did finding all of the flaps with hidden pictures. So it was no surprise that when our two girls were young, I littered our house with them. These…
It’s January, and despite the gray skies overhead and the lingering chill in the air, I feel a little more motivated to tackle the mundane tasks left on my to-do list. I’m starting with a thorough check of the batteries in our smoke and carbon monoxide detectors on each level…
I was 10 years old when I heard the crack of wood on wood that sent my croquet ball flying off into a cornfield. I turned to see my grandfather’s face flash a “gotcha” grin. He’d hit my ball with his, and instead of taking two extra turns, he’d decided…
Holding the phone to my ear, I exhaled slowly before speaking into the receiver. I’d dreaded getting this appointment on our calendar and had been waiting on hold to talk to a hospital scheduler. Some trips to the hospital are harder than others when managing my 12-year-old daughter Amelia’s…
As I headed west down the familiar highway from Pennsylvania to Ohio, my mind spun as my eyes took in the autumn hues around me. After two amazing days at the 2024 Friedreich’s Ataxia Symposium, I welcomed the long ride home in quiet. Usually, my drives to Philadelphia…
Staring across the table, I gave a reassuring smile to the student intern who was shadowing me that day. I mouthed “it’s OK” as heavily armored police moved through the home. We’d arrived at a client’s house just moments before a search warrant was executed and, with our badges visible,…
I looked at both my hands and scoffed. The next 30 minutes were going to be interesting. I’m an incredibly right-handed person, to the point that my left hand is pretty much just along for the ride. On this morning, my underused left hand was clean while my right had…
“Because we cannot bend the space-time continuum?” The words rolled out of my mouth and landed with a thud in what was already an uncomfortable conversation. If you’d just walked in the room at that moment, you would’ve been incredibly confused as to what was happening. There was a doctor…
Welp, it’s happened again. Summer has wound down and the gears of school have started to wind up. I can feel it pulling us into a new schedule that doesn’t necessarily include bowls of melting ice cream and homemade lemonade, half of which is in ice-filled glasses while…
I have always loved children. This feeling has been woven into so much of my life and career. When I found out that we were expecting our eldest, I bought onesies and hung them up around the entrance to our home. When my husband came home, I held up one…
“My mom is kinda crazy,” my daughter Amelia said with a half giggle while talking with one of her friends. If you ask me how often that’s said, my response would be “a lot.” Though sometimes the reference is about how far I’ll go to advocate for her, I’ve…
My daughter Amelia, age 12, almost missed being diagnosed with Friedreich’s ataxia (FA) because of me. I think about that sometimes when I need reassurance that I’ll put Amelia’s needs before mine while navigating her medical care. It was the summer of 2020, and I was sitting with…
Summer is here! In our home, that means fun things like trips to the pool and sleeping in. It also requires us to constantly be careful about the temperature in our house and keep an eye out so that our daughter Amelia doesn’t overheat. Even before she was diagnosed…
From the moment I moved out of my childhood home, traveling became a passion of mine. It wasn’t just about seeing new places or tasting unique cuisine. (Well, maybe food had a little to do with it.) It was mostly about seeing different ways of living and meeting new people.
I have two children who are incredibly different. One is outgoing, and one is shy. One likes to go with the flow, and the other came into this world with strong opinions. One has no known medical concerns, and the other, Amelia, 12, has Friedreich’s ataxia (FA). I’ve parented…
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…
During a recent layover at O’Hare International Airport in Chicago, I learned some unexpected news about an upcoming pediatric clinical trial for Friedreich’s ataxia (FA), the disease my 12-year-old daughter, Amelia, has. My flight to Chicago had been delayed by weather, which I find curious because the climate…
The pig was supposed to fly, but fear was holding her back. One summer night several years ago, I was watching the movie “Sing 2” with a child tucked under each arm. Both of my daughters were encouraging the character on screen to jump. Rosita, who my girls were…
“I know you!” The stranger’s surprise utterance greeted me at the elementary school of Amelia, my youngest daughter, who’s now 12. It happened years before she was diagnosed with Friedreich’s ataxia (FA). This type of encounter happened occasionally: A random stranger would recognize me, which caught me off…
The smooth, yellow rivets on the school bus caught my eye as it pulled up to pick up my 11-year-old daughter, Amelia. How often had I stared at them and not seen them? Then I noticed the grinning face of a young child waving at me through a window of…
“It’s not accessible enough.” That thought passes through my mind regularly as I look at the world. Not because of my younger daughter, Amelia, who has Friedreich’s ataxia (FA), but because of my mother. I’ve never fully understood my mother’s disability, and neither have many of the medical…
“Nope, not the same.” I’ve been saying that a lot recently. It might be my age. But it could be that I’m tired of the metaphorical yardstick we all seem to use, drawing comparisons between life experiences. Either way, I’ve been speaking and owning more of my truth about parenting…
I’m going to own it: I started 2024 with great ambition to work out more — followed by a fantastic lack of follow-through. My goal was to run a 5K race in the summer. I bought new shoes and started training, but after a few weeks, I struggled to find…
My 11-year-old daughter, Amelia, has Friedreich’s ataxia (FA), and the impact it’s had on her body and our lives has its own gravitational pull. As is the case for most people managing a chronic disease in their family, FA is always present, even when it’s not the conversational centerpiece.
It started as a simple question on our car ride home. “If you had a time machine, where in time would you visit and why?” The answers included typical kid responses — dinosaurs were mentioned — but my 11-year-old daughter Amelia’s quick statement made me catch my breath. She…
The rare disease community is full of unknowns. Due to the lack of research for many conditions, we often face uncertain outcomes or futures. Friedreich’s ataxia (FA) is no different, full of various symptomatic possibilities as it affects people in unique ways. As I talk and compare…
Though I love to travel, I sometimes struggle with maps. I often need clear clues and landmarks to prevent my brain from going to mush. I benefit from talking through the directions with a traveling companion. I stare at the “You are here” diagrams found at various destinations and need…
What do my email inbox and toothpaste have in common? They both have started to wear me out. I always prided myself on my tenacity and work ethic. I knew how to hustle, get things done, organize, streamline, and then reassess to do it better next time. Then Friedreich’s…
I saw the smile on the face before me tighten as the words from my mouth registered. I needed to duck out of the gathering early to go home and care for my 11-year-old daughter, Amelia, who has Friedreich’s ataxia (FA). My family was having an “FA is getting…
The cold, rough surface of the bricks beneath my cheek snapped me out of my shock. I had passed the fallen fire-pit lid in our backyard numerous times with the boomerang thinking that someone would trip on it. And here I was, that someone. We’ve all done it, walked by…
The magic of the season belongs to children — their laughter, joy, and beaming smiles. Though the pediatric population isn’t always seen at events for Friedreich’s ataxia (FA), their value and presence are no less real in our community. I’ve met many incredible caregivers with a…
A nearby candle slowly cloaked the room in the scent of a Christmas tree while my 11-year-old daughter, Amelia, and I sloshed through her homework. My phone lit up with a new memory notification, capturing Amelia’s attention. If you’re unfamiliar with this feature, it pulls photos or videos from a…
As my grandpa always said, “You need the right tool for each job.” Despite this, I always turn to the same tools out of habit when working around the house. My vise grip is almost always close, and I use it all the time. In fact, I often grab…
When our daughter Amelia first started showing symptoms of Friedreich’s ataxia (FA) and we headed off on our diagnostic odyssey, something else important happened: The laughter was sucked out of our home. I didn’t notice it at first when a cloud of many hard emotions began…
Here come the holidays! This magical season that brings people together amid specific traditions, unrealistic expectations, and uncomfortable conversations has been the source of so many Hollywood hits. Then enters Friedreich’s ataxia (FA), which almost always spins life upside down. Who’s excited? I hardly remember my parenting days before…
After 15 minutes on hold, I hesitantly opted for a callback when an operator was free. Though I am sure this feature was created with the best intentions, it is a one-time pass. Meaning that I am committed to keeping my phone free, with no bathroom breaks and a limited…
I love systems. From a professional standpoint, they fascinate me. I spent 20 years working as a social worker within a large system where I “grew up” professionally. Even when that system was frustrating, I understood it. I developed a new appreciation for the challenges of such systems as…
I have a confession: I’ve made some pretty big mistakes in my life. They were never intentional, but they were still harmful. They involved silver linings, overly positive thinking, and a perpetual need to immediately fix things. Does any of this sound familiar? Perhaps you’ve done something similar. My youngest…
When my children were young, one of my favorite moments was story time before bed. Nothing felt better than having a child under each arm with a good book in the middle. I know that the lessons from literature can be compelling, and these moments were more than just…
I love my “FAmily.” The network of incredible individuals that Friedreich’s ataxia (FA) has brought into my life since my daughter’s diagnosis has been such a blessing. I often say, “I hate this disease, but I love my people.” One such person is Jean Walsh. I met her while…
“Mom, come look at Amelia! It’s hilarix.” The gap-toothed smile of our then 6-year-old warmed my face, as did her inability to pronounce the word hilarious. I peeked around the door frame and immediately understood the complexity of what I was witnessing. Her younger sister, Amelia, then age 4, was…
As I stared at my fists gripping the steering wheel, I realized my muscles could not squeeze any harder. There was an absurdity here. I was white-knuckling my steering wheel, and my car was in park. The call that had sparked this reaction was still in progress. The medical professional…
As I raised the phone to my ear, I immediately heard crying. My friend and former co-worker was on the way to a family emergency and was looking for help. As a social worker, I balance the need to be present in feelings while also knowing that sometimes there is…
When our youngest daughter, Amelia, was 5, she hung twine throughout her bedroom. Then she arranged blankets on top of the strands to create an elaborate tent with sections for rooms. I’d never seen anything like it. It was one example among dozens over the years of how Amelia looks…
“So, does it ever get easier?” My eyes slid off the curly mop of brown hair belonging to a curious toddler and up to the questioning eyes of her mother. Pulled in by the pile of snacks my girls had left out on the picnic table, the 3-year-old had come…
As August marches onward, the memes around children returning to school abound. But the ads for back-to-school sales have triggered a new feeling in me this year, and it’s unpleasant. Once again, our 11-year-old daughter’s diagnosis of Friedreich’s ataxia (FA) has made normal feelings abnormal. Surrounded by other parents,…
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