Channeling My Resentment Toward My Sister’s Disease

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by Emily Wallis |

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In my previous column, I discussed the importance of finding a balance between all of the emotions that come with being a Sanfilippo sibling. There are so many ups and downs in this life, and finding a place in between those extremes is crucial.

My sister, Abby, has Sanfilippo syndrome. It is a rare, terminal disease that currently has no cure. Her diagnosis naturally affected our lives in every way possible. Even after moving into my own place, I harbor a lot of resentment toward those effects.

When I go home to visit my family, my sister is slightly different every time. She’s either latched on to a new word as she loses her speech, is less steady on her feet, or is having some other issue that wasn’t present when I last visited.

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I resent the way this disease affects my sister. It’s difficult to describe every way it changes her life. It robs her of communication — things as simple as telling us, “No, I don’t want that for dinner.” It robs her of everyday experiences. Most importantly, it robs her of her full life.

It took me a long time to accept the feeling of resentment. It felt like something I needed to suppress. What kind of life is led by resentment?

I soon realized that suppressing it wasn’t my best option. To cope with these feelings, I had to recognize them and accept them as part of my life. I am angry at how this disease affects our lives. But what can I do about it?

I led a resentful life for longer than I’d like to admit. After my mom’s cancer diagnosis and my sister’s Sanfilippo diagnosis, I was so angry at the world. I didn’t think I could ever find a way to live with such a mindset. Channeling these feelings was the most difficult part.

I had to find a middle ground between suppressing my feelings and allowing them to weigh me down. When I go home, I make it a priority to be with Abby. I study her, listen to her, and talk to her. I love hearing her laugh and I especially love hearing her sing. The pure joy in her smile opens the door to that middle ground.

When I catch those glimpses of Abby’s joy, the path to channeling any resentment becomes clear. My focus is Abby and the time I have to share with her. Life with Sanfilippo can be overwhelmingly frustrating and sad, but rather than allowing those emotions to lead me through a resentful life, they’re helping me to recognize that my time with Abby is precious.

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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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