How Sanfilippo Syndrome Has Shaped My Concept of Sisterhood

Earlier this year, I wrote a post called “Special Sisters.” For this week’s column, I want to expand on some of the things I said about my special relationship with my sister, Abby.

Growing up with a special-needs sibling, as I’ve mentioned previously, was (and is) difficult. It’s easy to become envious of others who have amazing relationships with their sisters. However, now I get to explore why the relationship I have with my sister is so special.

In “Special Sisters,” I mentioned three things that are associated with sisterhood: advice, solidarity, and friendship. The path that Abby and I trod together took a turn when we learned that she has a terminal illness, but these principles still guide us.

The advice that Abby nonverbally expressed to me can be summed up with one word: kindness. With Abby, there are no differentiators among people she meets. There’s no girl or boy, big or small, gay or straight, black or white. She loves with no filter.

In today’s polarized world, this is a pretty amazing quality to have. No one taught me unconditional kindness and love more than Abby. This is the principle that guides and carries our relationship.

The two other characteristics of sisterhood that I mentioned go hand in hand. Solidarity and friendship — at least with Abby and me — have a really unique and dysfunctional relationship.

I’ll preface this by saying that I’m not here to pretend my relationship with Abby is perfect, and that I am never frustrated or angry with her. With a terminal diagnosis comes an extra weight on each second that I spend frustrated with her, but it doesn’t take it away, by any means.

The solidarity part of our relationship lies more on me, because for Abby, it comes naturally. She just wants to love. It’s me who must put in a little bit more effort, and I’ll tell you why: Siblings fight! It’s normal. At the end of the day, a special-needs sibling is still a sibling.

This is a concept I think many parents of special-needs children and their siblings don’t always understand or recognize — even the most incredible, kind, and understanding parents like mine.

This is an example of a turn on Abby’s and my path. After I learned that Abby had Sanfilippo, one of the last feelings to register was the feeling of being robbed.

Despite the overwhelming guilt I felt after the diagnosis from being frequently frustrated with Abby, I also knew that it was normal to feel that way toward a sibling. I felt deprived of that piece of normality. How do you get frustrated with your sister knowing that she has a terminal disease?

I saved friendship for last because it’s the easiest. A sister is truly a first friend. No disease or disorder can change that. God placed us together. We’re locked in for life, however long that may be.

Anyone who knows Abby can tell you about her infectious laugh and smile. When she does it around me, even if I don’t know it’s because of me, it’s the best feeling. In those moments, I feel like she’s telling me that she loves me, and that I’m a great sister, which are two things I have trouble believing sometimes.

When these three things are put together, it creates a beautiful, wacky, one-of-a-kind relationship. We live by kindness, we unite in the tiny bit of normality that we have left, and we are friends for life. Being Abby’s “Special Sister” is one of the coolest jobs I get to keep for the rest of our lives.

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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.