A family trip reminds me of the power of creating memories
The beautiful parts of life help us face the hard times
As I heard the words come out of my mouth, I knew I sounded crazy. Yet there I was, pitching the idea to my husband: I wanted us to embark on a 16-hour journey to a place so remote that there’d be no running water or electricity. And we were not camping people.
As illogical as it seemed, I felt a strong need for us to go. The destination? My family’s cabin in Canada.
The idea of having a bucket list when dealing with Friedreich’s ataxia (FA) isn’t new. When our daughter Amelia was diagnosed with FA at the age of 8, other parents in our community encouraged us to do everything we could while Amelia was less affected by this disease. As her symptoms progressed, trips would become harder. Now that she’s 13, I feel more of a sense of urgency.
I only visited the family cabin twice as a child, but it’s so prominent in our family lore. My mother has shared many sentimental stories of her time there, while my siblings and I have joked about our experiences using the bug-filled outhouse, the incredible size of the mosquitoes, and the multiple meals of pancakes for days on end when rain made fishing impossible.
I have such vivid memories of watching my late brother playing in the water, catching minnows in his blue bucket while the sunlight danced through his blond curls. It was that memory that pushed me the most. Amelia loves being in water.
After many preparatory phone calls with my uncle, we decided to make the long journey north.
Elizabeth Hamilton’s daughter Amelia, right, studies her first catch of the trip before her great-uncle Joe, left, tosses it back. (Photo by Elizabeth Hamilton)
I’ve had to adjust my mindset when arriving at new places. Amelia can still stand and walk a few steps with assistance, but it’s challenging for her. Reaching the cabin’s outhouse on the hill would require some effort, but we were prepared. Upon our arrival, my uncle reminded me that the lodge next door offered us access to their facilities. Not only did they have an accessible bathroom, but they also had an access ramp — what a lifeline from a stranger.
As the family property has changed hands from one generation to the next, one thing has remained constant: This little red cabin was built with memories. From the lock on the front door to the bunk beds, nearly every piece of the building has a story. We used items once owned by my grandparents or great-grandparents, keeping those who are no longer physically with us present as we toasted bread or percolated coffee. My uncle wove stories of our ancestors into each moment, connecting my children with their past.
Amelia flourished as her creative self, navigating the boat without help, reeling in fish that fought back, and laughing freely with her older sister as the boat skidded across the waves. A month of columns couldn’t capture the beauty of so many moments crammed into our short time at the lake. Among the trees that once witnessed my mother’s childhood, we built unforgettable memories.
Sometimes, during medical appointments, I find myself sharing stories to remind Amelia of our experiences and the funny moments we’ve had. I try to help us both hold on to the beautiful parts of life while facing the hard times.
Now, we have our stories from Canada. I can help Amelia remember how we felt when we saw bald eagles landing on the treetops or soaring overhead. I can summon the peace we felt while gliding over the lake in a canoe surrounded by dancing lilies and singing loons. I can remind her of the time when her dad, who had no previous experience fishing, accidentally hit her in the back of the head with a fish. We can recount all the stories her great-uncle told her, some of which make us laugh so hard our eyes water. We can reminisce about how amazing the freshly caught fish tasted. FA takes so many things, but these moments we will keep.
This trip is my reminder to be bold and adventurous, and to go make memories, even crazy ones.
This column is dedicated to my Uncle Joe, who responded to my wild request to visit the cabin with a “let’s talk.” Your time with our family was such a gift. As for the neighbors who didn’t know us but showed incredible hospitality,”thank you” doesn’t feel like enough.
Elizabeth Hamilton captures a breathtaking sunrise during a recent family trip to Canada. (Photo by Elizabeth Hamilton)
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
Clester
I think I already suggested....Dr. Hoyle at OSU is an exceptional FA Dr. And has an incredible staff...though can be hard to become a patient....but well worth the wait.
I care for my wife who has FA and is very disabled( mostly due to a very incompetent ER Dr. that literally tried to kill her).
We live in our tiny 15 foot long camper that I made wheelchair accessible. We travel a lot and 95% of the time stay in national forests where there is no water or electric. I put solar on the camper so we have electric and a small generator in case we need it. We even have a washing machine, one of those tiny ones but it does a much better job than you would think.
We both love to fish. Her hands no longer work to operate a fishing reel so I made her an electric one that has a huge button that lays on her lap to operate it. It plugs into her wheelchair. When we had our boat it would plug into the boat ....using a standard power port like in a car. I built a lift that mounted on the boat to get my wife safely in and out of the boat that had an arm that came out and down onto the dock to stabilize the boat. She used the manual chair in the boat that I built a fishing pole holder on .
We love to travel and have seen many things . She did almost no traveling before we met so its hard now to keep her from traveling. Often we camp out in the middle of nowhere.
We mostly stay on the east coast traveling from upper Michigan to Southern Florida and everywhere in between.
Traveling with a disability is very challenging but with good planning and creative thinking it is very rewarding and doesn't have to be expensive....we live on just her SS which is about minimum wage. If we can do it, anyone can.
Never let fear or uncertainty hold your daughters experiences back...kudos for you taking that trip with her. As you said it's those memories that last a lifetime that matter. All the problems can be dealt with and will likely be forgotten or at least overshadowed by the joys recieved.