It’s Worth It to Take the Time and Get Busy Living

Columnist Valerie Tharp Byers' family decides to put worry to the side and create lasting memories

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by Valerie Tharp Byers |

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“Get busy living or get busy dying.”

As a teenager in the 1990s, I clearly remember that quote echoing off the television screen. It was from “The Shawshank Redemption,” one of the first R-rated movies I was allowed to watch. The film played around the clock on TNT, making it nearly impossible to miss.

From the perspective of a teenager, the quote fills you with hope and determination about how you are going to captain your own destiny as you move into adulthood, collecting memorable experiences and adventures along the way. You just know you won’t take any of it for granted.

And then you grow up.

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Suddenly, you find yourself with a job, and maybe a spouse. Life becomes routine, and you use phrases like “getting through the week.” You look forward to whatever vacation days you’re able to couple together. If children come, their needs and schedules understandably take precedence over your own.

But this extra level of structure and routine can be draining and overwhelming. And you forget about “get busy living or get busy dying” because now you’re just busy surviving what may be the busiest season of your life.

When our son, Will, was diagnosed with Sanfilippo syndrome, we were shocked out of the complacency we had been living in. We promised ourselves we wouldn’t take one moment for granted, and we would make spending time and having experiences as a family our main priority. But it’s more difficult than you realize because now more is added to an already full plate: medical and therapy appointments and insurance appeals and individualized education plan meetings and travel for clinical trials and so much more. Routine and surviving day-to-day life become the goal.

As I wrote last month, we are well aware that our time with Will, and our time as a family, is precious. Although we do well overall about living in the moment and taking no day for granted, we haven’t fulfilled the second half of our goal of showing Will as much of the world as possible and building those experiences into memories as a family.

This goal is important to us, not just for Will, but also for our daughter, whom we lovingly refer to as Little Sister. She was too young to remember when Will was her actual “big” brother, playing with her and helping to take care of her. We have pictures of that, of course, but we also want her to have big memories of big experiences with her brother that she can treasure.

By the time late 2019 rolled around, we thought we were ready. Will was still healthy and mobile enough to enjoy travel and activities, and Little Sister was old enough to be more self-sufficient and participatory in travel. To that end, we planned a big trip for the summer of 2020, excited to finally be able to take a family vacation to make memories.

And then COVID-19 stopped the world. It was incredibly frustrating.

While we knew our time together during COVID-19 quarantine was important, we wanted to give Will more. We wanted to get busy living.

We decided it was time to start going big in our memory making. We took pieces from our canceled 2020 trip and began planning a 2022 family vacation — an actual, weeklong family vacation that didn’t coincide with a clinical trial or a medical conference.

We were nervous. We would need to stay in a different hotel nearly every night. We would have to feed Will in restaurants, not from our carefully curated stores at home. We were leaving his, and our, safe spaces. It was intimidating.

And it was wonderful.

We took the plunge and made the trip, and it was all we had hoped for. We started in Niagara Falls (Will loves waterfalls), where we rode the sightseeing boat Maid of the Mist. We went to Canada, getting the kids their first passport stamps. We visited my father on his birthday. We went to the Cedar Point amusement park in Ohio. We rode roller coasters. We went to the village of Put-in-Bay. We rode a ferry. We went to the Cleveland Zoo. We went to a baseball game. To satisfy our own curiosity, we followed detours to see interesting things advertised by road signs.

We drove hundreds of miles in a rented minivan and we lived.

Was the trip difficult? Sometimes, but less than we anticipated. We learned that we could do it — we could let go of the safety of routine and take a big leap. We were rewarded with a beautiful adventure that will live in our hearts forever.

After this journey, my advice is to make the time. Take the trip. Live the moments. Trust me, it’s worth it.

get busy living | Sanfilippo Syndrome News | Wearing a bright blue T-shirt and a stylish fedora, Will poses in front of Niagara Falls

Will crosses off one of his top bucket list items at Niagara Falls. (Photo by Valerie Tharp Byers)


Note: Sanfilippo News is strictly a news and information website about the syndrome. 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 other 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 Sanfilippo News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.

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