Finding Balance Among My Many Emotions

As a Sanfilippo sibling, I experience many emotions every day. Each feels like a weight on my shoulders, and it takes a balanced mindset to juggle all of them. This is something I still struggle with.

My sister, Abby, has Sanfilippo syndrome. It is a rare, terminal disease that currently has no cure. Having a Sanfilippo sibling prompts many emotions, some of which I’ve discussed in previous columns, such as grief, guilt, and anxiety. It was important for me to shed some light on these feelings because they are so present in my life.

But a discussion about managing all of them while they are being thrown my way is equally important, if not more so. I’ve struggled with this recently because of other stressors in my life. As a teacher, August is one of the busiest months for me, which is compounded with everyday life problems. As Sanfilippo siblings, everything can become overwhelming, and we often feel isolated when thinking about the emotions that we experience.

Managing all of these feelings can seem like an impossible task, and it’s easy to feel helpless. What normally sends me into that state of mind is the anxiety and frustration I feel for my parents.

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I moved to a different part of Houston that is closer to my job, and I no longer live with my family. Every time I visit home, I am struck by an atmosphere that is often tense. Caring for Abby is a full-time job, much like how parents must care for a newborn. Abby requires attention from the moment she wakes up until she goes to sleep. I often return to my apartment after visiting home and think about what my parents do every day.

I admire my parents for their patience and selflessness, but I feel helpless because I can’t change how stressful their lives are. Seeing their unconditional love for Abby is a beautiful thing, but it pains me that they must watch their child lose basic life skills. I just wish I could fix it.

Sanfilippo steals so much from my family. I can’t fix the fact that Abby must be fed every meal or taken to the bathroom every few hours. I can’t change the fact that we don’t know what’s going on in Abby’s head — such as whether she’s hurting or trying to tell us something. Most of all, I can’t change how Sanfilippo affects my life, the lives of my parents, and Abby’s life.

While Sanfilippo has created these feelings of helplessness, I can’t think of a better example of unconditional love than my parents and Abby. Throughout college, and even now, I have kept pictures of Abby in my classroom. I look at photos of my family and think about how lucky I am to love Abby and be loved by her. Being her sister is one of the best parts of my life.

Being a Sanfilippo sibling forces me to accept that some days are good, while others are bad. Accepting it all can be difficult, which is why I’m still working on it four  years after Abby’s diagnosis. That’s why emotional balance is so important.

Are you a Sanfilippo sibling? How do you manage the emotional roller coaster that it causes? Please share in the comments below. 

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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.