[This post was originally written for and published on The Arc’s blog on March 19, 2018 for Developmental Disabilities Awareness Month.]
It’s now been almost five years since I first wrote about future planning. I was 22, and living in Washington, DC — 1,300 miles away from my family in Dallas.
At the time, my sister Caroline was 18. We were both entering new phases of our lives. I was fresh out of college, and she had just reached legal adulthood. (Her birthday milestones honestly were always more striking to me than my own). Caroline was born with a rare neuro-genetic disorder called Angelman syndrome. The prevalence of AS is estimated to be somewhere between 1/12,000 and 1/24,000.
I was in third grade when we finally discovered my sister’s diagnosis. I know, because my mom tells the story of how I went to school, and told my third grade teacher that I was worried about how I would take care of Caroline when something happened to our parents.
Years later, when my parents took our family out to dinner to celebrate my high school graduation, I have a perfect memory of sitting at the table feeling deeply guilty, and near tears. I was soon to move to DC for college. At the table, my parents expressed how important they thought it was that I go. When I later moved away to college, it was deeply unsettling for about a semester. Everything I had to do every day suddenly only revolved around, well, me.
The years passed, and I thrived in DC. I love that city. It’s my home away from home. But I felt those tugs. Sometimes the feeling was quiet, sometimes it was loud; but it was there. Feeling too far away, feeling too selfish. Feeling the desire to be a present fixture in the lives of my family members — to be a more active part of Caroline’s care network.
I’m now almost 28; she is almost 24. I lived in DC for eight years. Two years ago, I moved back to Texas. For one of those years, I lived in Dallas. It’s hard to explain the internal battle between feelings of obligation and not knowing with any certainty what you really want, personally. But you know what I’m talking about. It’s part of the human experience. It has nothing specifically to do with having a sibling with disabilities. It’s a universal experience. This is just a particularly salient part of how I experience this struggle. None of us can know if we’re making the right choices; We just do what we can, and keep moving forward.
What I can say with certainty is that living in closer proximity to my sister deepened our connection considerably. When living further away, I could still say hi to her on the phone. (Or like when she somehow figured out how to FaceTime with me while I was at work and she was in class).
But living back home, she would spend the night over at my apartment. We’d make dinner, and watch The Great British Baking Show. She loves to watch my pet rabbits run around. I got back in sync with her nonverbal cues, and she got back in sync with my micro-movements. (I swear to you she can tell when you’ve had a thought, and haven’t even said anything yet — her emotional intelligence is through the roof). It’s these subtleties that were difficult — near impossible, even — to maintain, in a long-distance relationship with her.
There’s no right decision for me, or for other siblings. But I can say for certain that I don’t regret moving back to be closer.
I was reflecting on these past ten years just recently; I was doing some work in a coffee shop, and a family came in. A mom, dad, older sister and younger brother. The younger brother had Down syndrome. They were all hanging his art on the coffee shop wall. As I understand it, the sister had independently reached out to the coffee shop about featuring her brother’s work, and the other artist currently featured on the wall had volunteered to share space. As I chatted with them, and watched as they arranged his art, I had an odd sense of deja vu. Reflecting on being the sister’s age, and pondering college. (She appeared to perhaps be in high school). These thoughts can feel so isolating, but they are such a deeply shared experience. Meeting them by happenstance reminded me of that.
Growing up feels like continuously uncovering that behind the tapestry is a mess of loose ends. From chaos, comes order (or at least hindsight). When I was younger, I worried about Caroline’s future with a general sense of anxiety. Now that I’m older, I worry about increasingly complicated specifics. We have been having active planning conversations for years, and on some level, it grinds away in the back of my brain nonstop. Despite working so proactively, we still don’t feel close to having an answer, or feeling prepared.
I hope that for anyone reading this, these thoughts inspire thoughtfulness, not paralysis. I accept that we can’t ever know anything for certain. It can be overwhelming, but I fervently hope that other siblings and families don’t shy away from these conversations.
Amberley Romo is a software developer in Austin, Texas. She is part of a project to build a free, open-source, web-based communication app.