Welcome to my little project!Posted: February 7, 2009
I’m starting this blog as a place to talk about the way life works for those of us who are adults with adult siblings with special needs. There are some great resources out there for those of us in the sibling community, but there have been times when I’ve wanted to have a slightly different kind of space in which to talk about my family. My hope is that this is a safe space for anonymous reflection – I’ve gotten permission from my family to share our stories here, but none of us wants to have our names attached, for a variety of perfectly respectable reasons!
I’m very lucky to be living my own life, currently without any direct responsibility for my sister. Perhaps it’s counterintuitive, but that can sometimes make it harder for me to cope with situations that come up in her life. It’s like the distance between us makes the space between us that much more tangible, although this is a poor description of the emotion. One of my friends and I have recently been talking about the strangeness of having siblings (and other family members) who have serious medical issues that we don’t confront on a daily basis, as each of us is away from them while working on advanced degrees. We have each gone back to our family homes in the past year to help during medical crises. It was largely with her support that I decided to start a blog. (Thanks!)
I imagine that some people might wonder why I named this blog Born That Way. Here’s the story:
When my sister and I were a good deal younger, we each went through a phase of not being sure how to handle strangers and their inquiries. As the older sibling, I mostly shot dirty looks at people whom I perceived were not staring at my sister the right way. This happened a lot at grocery stores and the mall. (Thankfully, I’ve become less judgmental as I’ve grown!)
Some people came up to us to ask questions. My mother, a wonderfully patient educator, was really good at handling these queries. Sure, there were people who came over to be pitying, thinking they were being sympathetic, but there was some honest curiosity. Mostly people wanted to know what was wrong with her, or why she only had one eye. (She was born with – among other things – a severe left-right asymmetry of her skull, including cleft lip and cleft palate, and a single eye. The other eye is just closed lids over an empty socket.) My mom’s answer was that my sister “was born that way.”
Some people wanted to know how old she was, at which point my mother would gently note that they could just ask her. I was always torn when she said this; the kid wasn’t terribly good at remembering her age at that point in her life. Plus, as I remember it, she was starting to really develop her dramatic skills, and I thought that she was amused by lying to people about her age. She often grinned when we prompted her to give the correct answer. On the other hand, I was entirely supportive of my mother forcing people to realize that my sister was not some oddly-shaped doll, but a living child capable of conversation.
Anyways, this happened rarely, but often enough to become annoying to me, and as I soon learned, to my sister, as well. As I mentioned, my sister was starting to develop some dramatic play skills, and spent a fair amount of time with her toys in front of the hallway mirror when playing by herself. I remember watching her conversations with herself, especially one particularly painful exhange. She had developed the habit of pushing her index finger against her upper eyelid, and has almost always had the habit of rocking back and forth while seated, and she was doing both of these things. I heard her ask – mimicking all too well the condescending tone of curious adults – “what’s wrong with her eye?” The answer was angry and fast. “She’s born that way!”
I think that’s the time in her life when she started noticing that she was Not Like Everyone Else. She repeated this exchange several more times in my hearing over the next few months. She also started using it in public; I think Mom started letting her answer the questions about her eye, but my memory is hazy on that point.
So that’s the story. I hope you’re interested in reading more, and perhaps sharing your thoughts and stories, too. After all, each of us is born some way – and we grow from there.