Planning this project has been an overall and overwhelmingly positive experience for me. I have been lauded and applauded by parents, teachers, and friends for spending the summer driving across the country on this journey, with this mission. And yet, I still have experienced crystal clear moments of doubts and second-guessing. I want to talk about one of those moments today.
It was the night before my first “sibs” interview ever. I was going to be interviewing a Princeton senior the next day who had an older brother with Down Syndrome as well as additional medical complications. The reason why I found myself so antsy about that interview is that I was struck with a fear that we wouldn’t have so much in common, that our tales of being “sibs” would be cacophonous instead of harmonizing. While my brother struggled mostly with social skills, her brother had chronic medical concerns and also a diminished mental capacity. I obviously knew that every sib I talked to would be different and have traveled a different trail (drawing from Ellie’s metaphor), but what if there was simply no common ground, no middle to our Venn Diagram.
Within minutes of talking, I was so ecstatic to be very much proved wrong. While our stories differed in their contexts, at the heart of them was a strikingly similar picture of what being a sib looks like, how it affects the way we think and feel in a myriad of daily situations. I was struck by our similarities and I think I even took that to mean that maybe there would be such a coherent narrative that we would just hear the same things again and again this summer. But even after reflecting on the differences and similarities of Ellie and I’s experiences, my view on this has shifted yet again.
Here’s what I know now: I know the stories we hear will be widely varied and even at times at odds with one another. The point of this project is not to produce blog post after blog post of the same sib profile; on the contrary, it is to push people to see all of the different ways that having a sibling with special needs can shape and mold who you are and how you feel about your situation. So, if you’re out there and a sib, we want to talk to you; no matter how much your tale reminds us of our own.