Sanfilippo Syndrome Robs Me of Closure

I have an interesting relationship with my sister, Abby. Because she has special needs, our relationship has always been rocky. I often would become jealous of the extra attention she received, and it weighed on me for many years.

When Abby was diagnosed with Sanfilippo syndrome, a rare disease that has taken away her ability to talk, among other things, our relationship took a turn like no other.

The guilt of not being closer to my sister still weighs on me. My faith, family, and self-growth have all helped to ease these feelings, but they have always been there, and I fear they will never go away. The night Abby was diagnosed is incredibly vivid in my memory, namely, the guilt I felt. The regret of not being close to my sister was overwhelming.

I don’t think Abby has ever doubted that I love her. I have never treated Abby badly, but I also haven’t always been the most welcoming or loving sister. It is difficult for me to admit this, given Abby’s prognosis.

My relationship with Abby has weighed on my mind a lot lately. Since I moved out of the house, I think about her a lot more. Today, I have been questioning myself about why I can’t let go of my guilt. As I thought about it more, I had a big realization: Because of Sanfilippo syndrome, I can’t talk to my sister. This has always been something that troubled me, but it finally clicked.

I hold myself to a high standard. When there is a task at hand, I become a perfectionist. I stress about the task until it is completed. The “click” happened when I looked at my relationship with Abby. As I stated previously, I don’t believe there’s a doubt that I love my sister. However, I have doubts about whether I have been the best sister possible.

Because Abby can’t talk to me, there is no way for me to get that closure. Abby will never be able to tell me that she forgives me for all of those times I was frustrated with her or angry with my life due to her disease. This, paired with my own struggles with self-doubt, weighs on me.

I’ve found some relief by realizing that there’s a connection between my struggle with doubt and Abby’s Sanfilippo, but her prognosis scares me. I fear that I will never let go of the guilt.

The only thing I can do is love my sister every day I have with her, and remind myself that not everyone is perfect, and that Abby’s love is unconditional.

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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.