When I was a child my family and I used to spend weeks with my grandparents in Arizona each year. My grandparents live in a rural area, on 5 acres off a dirt road—as far from suburban New Jersey life as you can get.
Summers there provided times of connection: walks with my mom, cooking and sewing with my grandma, reading alongside my grandpa. They were times of dolce far niente, the beauty of a simple life.
Of course, sometimes it got tiresome. There were afternoons when it was too hot to do anything but lie down…but those afternoons would precede glorious, clear nights. We’d set up lawn chairs and watch the sky. The shooting stars were better than TV.
It was there that a very special photo of me and my brother, Willie, was taken.
I have few memories of the time when Willie was diagnosed with autism, and this is my favorite. This photo helps me to remember the dust under my feet, the line of Volkswagens, the turning of those wagon wheels. And it also helps me to remember three truths I’ve learned about trust and relationships.
There was a time when I thought of going to L’Arche (a faith-based non-profit organization that creates homes where people with and without intellectual disabilities share life together) as a ‘surprising’ twist in my life. After all, I didn’t plan to pursue care-giving. I’d been an English major and Art History minor at Vassar; I didn’t study social work.
Yet when I look at this photo, I can see that my choice to come to the L’Arche community was no surprise at all. ‘As in the beginning, so in the middle, so in the end.’
When I look at this photo, I can see that my entire life was a preparation.
Being part of my particular family readied me for the challenges of L’Arche. Likewise, living L’Arche helped me to finally accept that, though growing up as Willie’s sister came with unique challenges, it also came with a very specific set of gifts.
My expression in this photo is telling; for a young girl, I look quite serious. I’m focused, concentrating hard. I’m becoming a person who understands that love and responsibility are intertwined. I’m being the big sister, making sure her little brother is looked after.
And then I look at my brother’s expression, and it seems half-anxious, half-happy. He’s doing something he wants to do, but he’s not sure it will go as planned. Even so, I see a boy who wants to get moving. That’s something I have to remember when I get over-protective: Willie has a need to explore and dare.
In fact, it’s likely that we were heading toward the chicken coop when this photo was taken. I loved to collect eggs like a responsible ‘farm girl’…and Willie loved to chase the roosters.
Allowing my brother to play with chickens on the farm was an essential part of my parents’ responsible caregiving…because it gave Willie a chance to be himself, to embrace the dignity of personal risk.
When I look at this photo, I focus on the point of connection between us: my hand on the yellow handle. I have a sense that my happiness is tied to his, that we are more alike than I realize. In this picture, we are too little to face hard truths; indeed, the word ‘autism’ was weightless for me then. But the phrase ‘big sister’ was—and always has been—substantive.
Being Willie’s big sister has meant letting go of so many things: my need for control, my fear of the future, my desire to appear as part of a family that has it all together.
What helps me to let go? Allowing shared adventures to fill the space where fear used to be. Sometimes I still don’t know how to relate to Willie, but I learn as I’ve always learned: by trying, by risking. As Theodore Roethke wrote in “The Waking,” “I learn by going where I have to go.”
This photo shows me what loving my brother once meant for me: looking over my shoulder and towing him behind me. Being in front, in charge. Going ahead of him into the world.
Nowadays, I think that loving my brother means standing beside him. Willie doesn’t need me to pull him along anymore. He needs me to be his sister, his friend. To keep the faith.
True, there are rocks and tumbleweeds in our path. There is uncertain terrain ahead, literally and metaphorically.
Even so, I look at this photo and I think: we have each other. We have nothing to worry about.
Caroline McGraw is a would-be childhood paleontologist who digs for treasure in people. She writes about finding meaning in your most challenging relationships at A Wish Come Clear. This post is an excerpt from her forthcoming book, Love’s Subversive Stance. She also serves as a copywriter, helping disability-focused non-profits and small business owners tell their story.