To My Fellow Siblings of Children With Special Needs, Please Know This
To my fellow siblings of children with special needs:
I’m going to give you some unsolicited advice.
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.
I want you to know it’s OK to not want to be defined by your relationship with your sibling. This is something I’ve struggled with for years. The rotating cast of doctors and therapists and Facebook followers in Lexi’s life often neglect to learn my name, which might as well be “Lexi’s sister.” It’s these people — who, ironically, would never ignorantly say Lexi’s disability defines her — who treat me as if I have no life or purpose outside of my sister. They constantly tell me my parents must be so proud of me because of the way I help out with Lexi. They constantly tell me I’m so lucky to have a sister who can teach me so much about maturity and heartache and loss and love. I cannot deny that Lexi has shaped me in ways I haven’t even discovered yet, but she doesn’t make me who I am. I’m Lexi’s sister, but I am also a public relations student, an avid reader, a volunteer for Best Buddies, a nail polish fanatic, a friend, a girlfriend, a daughter and a sister to the three other kids in my family. I play so many roles every day that it’s silly to say I learn love or heartache or joy or pride just from one of the many hats I wear. I’m proud to be Lexi’s sister, but I’m also proud to just be me.
Please know I’m definitely not suggesting you should correct all the nice people who mistakenly identify you as no more than another player in your sibling’s life. It’s not their fault. They don’t know that what they’re saying is so wrong. But I do want you to know in your heart that it doesn’t make you selfish to want to be your own person.
Your life will come with a sea of emotions and the only way to stay afloat is to feel them — both the good and the bad. This is not an easy life we’ve been given, but it’s our life and that means something. Nurture your brother or sister and appreciate your parents, but most of all please do not forget that you, as a sibling and as all the other roles you might play, matter.
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