Emotional Nights at Home With My Sister
Since I moved out of my parents’ house, I love coming home on the weekends. I get so excited driving home and thinking about spending much-needed time with my family.
My sister, Abby, has Sanfilippo syndrome, a rare, terminal disease that currently has no cure. Along with other basic life skills, she has lost most of her speech. She also wears a diaper because she can’t control her bathroom functions.
Last weekend, I was at home with my family. We were in the living room watching TV. Every night, my parents set up an iPad so they can watch Abby in her bedroom. She started making noises, which is normal, but something sounded off. My mom went to check on her and found that Abby had a bathroom accident.
I wanted to write about this because I was incredibly aware of my emotions that night. I was so sad and angry. It infuriated me that this is how my parents live every day. It crushed me that Abby has to live this way.
Abby was awake for most of the night, as was my dad. It’s hard to sleep in the house when Abby’s awake because she talks at full volume.
Unfortunately, this is not a rare occurrence. It’s routine, even for me. Every time I go home, I’m reminded of how Sanfilippo affects my family every day.
Tensions rose very quickly that night. I was taking the sheets off of Abby’s bed, my mom was in the bathroom with Abby, and my dad was cleaning what he could. We were all frustrated, trying our hardest to keep our cool.
Coming home is one of my favorite things to do on the weekends. I love seeing my parents, my dog, and my friends, but this is the hardest part. It’s a cruel reminder of what my household looks like when I’m gone. There are always days when we feel like curling up in bed and shutting the world out, but Sanfilippo syndrome doesn’t do that. Abby can’t do that. My parents can’t do that.
It’s important for me to share these raw emotions because that’s the reality of Sanfilippo syndrome. It’s sleepless nights. It’s tension and frustration. It’s the inability to press pause. Spending time at home with my family will always be one of my favorite things in the world, but Sanfilippo robs even that joy from me sometimes.
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.