To my fellow siblings of children with special needs:
I’m going to give you some unsolicited advice.
But first, let me start by saying I’m the proud older sister of a beautiful 12-year-old girl with a severe physical disability. Though I’m nearly eight years her senior, my sister, Lexi, is my best friend. Since her birth, my family’s path has been a little bumpy, but I feel blessed to have Lexi in my life every day.
I don’t think for a minute that my experiences with Lexi give me any license to comment on your life or your feelings. I’ve spent many years trying to explain to parents that even they cannot truly understand what it’s like to be the sibling of their child with special needs. The relationship between a parent and a child is so different from the one between two siblings.
I’d be entirely hypocritical to suggest it’s not difficult to be the parent; I’m awestruck by the strength of my mom and dad every day. But my parents cannot understand what it’s like to be Lexi’s sister any more than I can understand what it’s like to be her mom or dad. In the same fashion, I cannot understand what it’s like to be your sibling’s sister any more than you can understand what it’s like to be Lexi’s. But I do like to think my past 12 years of both angst and joy with my sister have left me with some insight into living in the world of disabilities. So I’m going to share with you a few things I think are important for every sibling of a child with special needs to know.
Your life will be hard. You know this, obviously, but I still think it’s a critical to acknowledge this. Countless doctors, physical therapists, family friends, and, occasionally, even strangers in the middle of the grocery store have told me the hard times are nothing compared to the knowledge and inspiration I will gain just from being Lexi’s sister. I love Lexi more than anything in the world, but being her sister straight up sucks sometimes. It’s more than feeling a pang of jealousy or worry in my heart, and it’s more than the frustration that comes with constantly preoccupied parents. For me, it’s the devastating injustice of having my college fund drained to pay off medical bills. It’s the crippling guilt that comes with watching my mom struggle to take care of my sister when I leave for school. It’s an undying commitment to take care of a child who isn’t mine to take care of. I don’t want you to get the wrong idea because I wholeheartedly believe it’s all worth it. I wouldn’t trade Lexi for anything or anyone. But I also think it’s so important for you to know that it’s OK to feel like disabilities suck sometimes. It’s OK to be jealous and resentful and guilty. It’s OK to be tired of hearing about healthcare and insurance, and it’s OK to wish your life was easier. I certainly feel that way sometimes.
To read more click here: http://themighty.com/2015/01/to-my-fellow-siblings
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Rebecca is an independent publisher working to help siblings of children with emotional challenges.