I recently accepted a teaching position out of town, and am moving into a new apartment this week. As exciting as this is, I can’t help but be sad about leaving my family. Extra emotions come with being a Sanfilippo sibling, including the guilty feelings that accompany events like a move away from home.
Since I signed the lease on my apartment, I’ve done a lot of reflecting about my move. I’ve thought about my parents, and my sister, too. There are two aspects to my feelings of guilt, the first being that Abby will never be able to move out or experience things as the average person does.
I turned to a Facebook group for siblings of special needs individuals, as many such siblings experience this sense of guilt. They expressed the same thing, that they experience feelings of guilt when “moving on” and doing things that their siblings will never be able to do. This guilty feeling is one of the lifelong struggles that come with being the sibling of a special needs person.
The other aspect of my feelings of guilt is that I get to move away from the responsibilities that come with Abby’s Sanfilippo diagnosis, but my parents cannot.
My parents will continue to get up multiple times during the night when Abby wakes up. They will continue to feed her every meal, take her to the bathroom, and meet all of her needs when she can no longer meet them herself.
As I’ve said before, Abby and I have been blessed with two incredible parents. We are so lucky to have two role models and providers who love us unconditionally. Abby is not a burden to the family, but sometimes, Sanfilippo is. All of us have moments in which we feel angry that our relationships with Abby are not “normal” and that Sanfilippo has taken so many of her abilities away, making her completely dependent on those around her.
That being said, my goal for this column is to be brutally honest. While I’m writing, I often feel as though I’m presenting Abby as a burden in my life. I especially felt this way while writing this column, but my intention is never to depict her in this way. Despite the frustration and emotions that come when everyday life meets Sanfilippo, it is so important for me to keep those joyful moments in mind — her singing, her laughing, and her sweet smile that greets you when you come through the door.
I am grateful for the opportunity to branch out and accomplish great things, but regardless of having the most incredible family and support system, part of being a Sanfilippo sibling is feeling weighed down on this journey.
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 Services, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.
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