Saturday, May 13, 2017

A Sibling's Perspective

When Beth was born in October of 1984, we didn't know that she had Down Syndrome. They told Chuck that night, while she was being measured and weighed, and they told me the following morning. What a roller coaster ride that was!

Two years later (almost to the day!) I gave birth to Sharaya. This girl is the most sweet-spirited, gentle soul you will ever meet.

I still remember the day that Sharaya surpassed Beth in life. Beth was 6 and Sharaya was only 4.

Since that day, Sharaya has coaxed Beth out from under a desk at school, been her partner in numerous kids choir concerts and defended her against bullies. So many things went on that I didn't find out about until the girls were adults. Even the other day, after reading Sharaya's blog post Chuck asked me, "Did you know about that?" Neither one of us did.

With permission, I'd like to share with you one siblings perspective about growing up with a sister who has Down Syndrome.

what could have been

Whenever someone asks me if I have any older siblings, I always say "Yes, but my older sister has Down syndrome." And there's a lot that's held in that "Yes, but" that people don't necessarily realize. "Yes, but I didn't grow up with an older sister who showed me the ropes or gave me advice about boys. Yes, but I didn't have an older sister who taught me about make up and hair or helped me learn from her mistakes. Yes, but I didn't get all the things that come with an older sibling. Yes, wasn't what it could have been." I love my sister but I have always longed for that older sister I never got. The older sister I had to become in place of the one I often needed. Who knows where my life would be right now if I had someone ahead of me, guiding me and showing me what NOT to do - what roads to take and which to avoid. 

The dedication to normalizing special needs kids is awesome and the mantra of "their lives are just like yours" is great and all but my life growing up (and still often now) is quite unique and challenging and that was always obvious to me even at a young age. As a kid who was bullied in elementary school for being the sister of a "retarded kid," it was MADE obvious. Thankfully we've come along way but growing up 30 years ago with a sibling with Downs was not a walk in the park. It was a life filled with bullies, loneliness and isolation. 

I didn't grow up with a big sister. I grew up past my older sister. I did all of the huge milestones that come with adolescents like getting my license and moving out of the house, all the while having this constant guilt-filled sorrow knowing I wasn't the one supposed to be doing these things first and the one who was, was just as heartbroken. When I announced my pregnancy 8 years ago, she didn't talk to me for 4 months and we both knew why. It wasn't supposed to be me. 

So when you ask if I have any older siblings and I reply, "Yes, but..." I really mean, "You have absolutely no idea."

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