Finding Your Home Base in an Uncertain World

Finding Your Home Base in an Uncertain World
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My favorite part of writing columns for Sanfilippo News is the opportunity to reach people both in and outside of the Sanfilippo community. In this quarantine, we’re all sort of in the same boat. We’re locked in our houses, anxiously watching the news and wondering when exactly we’ll be able to start building our new normal. Quarantine affects people in many different ways, and it’s important for us all to find our “home bases” — things that ground in our altered reality.

A few weeks ago, my family was supposed to host our third annual 5K event to raise money for the Cure Sanfilippo Foundation. The COVID-19 outbreak forced us to cancel it. Despite that disappointment, I was overwhelmed by the sense of community during our virtual gathering. My family has an incredible support system, and in this yearly event, all of those people come together at once to show their support. Their love and prayers seem increasingly tangible with each person that arrives to participate.

This feeling of community is my first home base. Whenever it seems as though the fight of my sister Abby’s Sanfilippo syndrome becomes too much for our family, I fall back on these people who consistently show up for us. Community becomes a home base in these isolating and lonely times, whether through texting, supportive Facebook comments, or connecting with fellow siblings of people with Sanfilippo.

This quarantine has also taught me the importance of a different type of safe haven — one that nourishes the mind. Perhaps it’s not so much about what you’re physically doing, but what your mind is doing. The second type of home base is one in which you can simply close your eyes and feel peace. It’s not about being uplifted or in a happy mood; rather it’s about finding the tranquility lacking in today’s world.

For me, this home base includes my embarrassingly big pair of headphones, a good album, a blanket, and a hot cup of coffee. With these four things, I can channel a serenity that slowly pushes the world away, even if for just a short time.

In a world full of uncertainty and isolation, it’s important to find your home bases. Allow the people you love to uplift and engage you. However, it’s just as important to take care of your own mind in whatever way you choose, whether it’s cuddling up with a good book or silently reflecting on things at the forefront of your mind. During this quarantine, tap into those home bases as many times as you need so they can do their jobs in your life.

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Note: Sanfilippo 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 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 Services, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.

Emily is a 22-year-old first-grade teacher. Her sister, Abby, has the rare neurodegenerative disease Sanfilippo syndrome, which has been coined a “childhood Alzheimer’s.” She is a Houston, Texas, native and enjoys all types of writing, spending time with her family and friends, and learning something new every day. In this column, she shares the ups and downs of caring for Abby.
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Emily is a 22-year-old first-grade teacher. Her sister, Abby, has the rare neurodegenerative disease Sanfilippo syndrome, which has been coined a “childhood Alzheimer’s.” She is a Houston, Texas, native and enjoys all types of writing, spending time with her family and friends, and learning something new every day. In this column, she shares the ups and downs of caring for Abby.
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