Finding the Unity in Disability

If I don’t have a topic in mind when it’s time to write a column, I read articles. I look into the lives of other siblings of special needs individuals, delving into the struggles, pains, and joys of their respective experiences. From this, I usually find something that I can relate to in my own life, and I let the writing guide me to my own ideas.

I often get goosebumps when I see how similar our lives really are. Regardless of disability, location, age, or anything else that may divide us, an indescribable feeling of solidarity comes with hearing other people describe exactly what I feel.

Even in a situation like mine, in which I have incredible parents and people who show me more love than I’ll ever deserve, having a sibling with any sort of disability is incredibly lonely. Of course, there are resources like this column, support groups, and even camps to minimize this seclusion. I had the Facebook groups and the day camps, but it’s really hard to understand that other people go through the same experiences when the people closest to you have normal sibling relationships.

Perhaps my favorite thing about this diversely unified group of siblings is the comfort that comes when you’re allowed to express those deep, dark feelings that to everyone else sound selfish or unreasonable. It’s better than a lightbulb moment. It’s a “You, too?!” moment. It breaks a little bit of the shell away because it provides not only justification but also the reassurance that it’s not just me.

When I was younger and connected with other siblings, it helped, but I haven’t been able to fully appreciate it until now. It’s interesting, because one would think that the feeling would be worse since my sister, Abby, was diagnosed with Sanfilippo syndrome, which is incredibly rare.

The fact that my appreciation for a connection with other siblings has only grown since our Sanfilippo diagnosis is the reason I wanted to write this column. If this column makes its way to a sibling of someone with cerebral palsy, they will find something that connects us. Autoimmune, neurodegenerative, etc.

When we received Abby’s Sanfilippo diagnosis, I didn’t get a new set of struggles. Yes, there are added struggles that come with the word “terminal,” but that doesn’t take away what unites siblings of individuals with other disorders. We all experience jealousy, resentment, embarrassment, and all of those feelings that we’re perhaps too scared to admit, because to others, it doesn’t make sense.

Our parents are amazing, but they can’t step into our shoes, much like we can’t step into theirs. Our friends can be the most supportive people in the world, but they go home to their disability-free siblings. In this position, you need someone who has been in your shoes.

Life is hard sometimes. It doesn’t matter what your sibling has. I understand, and if it’s you that I’m talking to, I hope you find your “You, too?!” moment in this column.

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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.