I spent a lot of time with Abby a couple of weeks ago. Her caregiver was sick, so I knew I’d be spending several days with her.
I had two options: I could be angry at Sanfilippo syndrome, which makes caregiving necessary in the first place, and fall victim to the dark, overwhelming feelings I described in my last column. Or I could be grateful for the opportunity to spend some one-on-one time with my sister.
As a human being (and Abby’s sister), I was put off by having to cancel my plans for the rest of the week. Not admitting that would go against my honesty code for this column. However, I knew having that attitude wouldn’t get either of us anywhere.
The thing I noticed the most during our time together is that Abby exudes love. I could see it in her eyes, even when I was practically pulling my hair out.
Quality time together makes for some of my favorite memories. Despite the stereotypical “sibling rivalry” and tension that comes with having a sister or brother, other feelings take over when we hang out, such as joy.
My time with Abby showed me what I do have. For example, I have jam sessions with my sister. Sure, they may be to songs from SpongeBob SquarePants, but the bad singing and dancing matters more, right? I also have Disney movie marathons. Who doesn’t like watching “Frozen” over and over again?
I love how when I talk about things that Abby may or may not understand, her laughter or facial expressions seem to fit our conversation. We may not have a “normal” relationship, but no one can take away how much I enjoy laughing along with her.
It’s hard to explain these cherished parts of my life and the place they hold in my heart. People may struggle to understand why these memories are some of my favorite things. To people on the outside, they’re simple, everyday moments with someone I love very much. To me, it’s part of my complicated relationship with Abby.
The other week reminded me of how much my sister loves me. Despite my frustration with Abby or resentment over tasks that come with Sanfilippo, she is a constant reminder of unconditional love.
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.
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