Small world, big deal, she says like a chant, or a mantra, keeping the focus on the immediate changes they’re fighting for: health services, education, and employment opportunities for the disabled; improving the quality of life of children who sleep in wards of metal beds and are bathed and fed and changed by strangers; making administrators and people in power care about families other than their own.

Later, when Louise reluctantly agrees to send Eleanor to Fernald, too, you’ll come to understand that she’s also thinking about the parents like herself, who were told by doctors that they had no choice but to put their children there, and the guilt they feel for having sentenced them to small lives of containment and confinement and exclusion. Though she won’t ever talk about it, not even when you’re grown, you will always know that she never forgives herself. You will also know, in some fundamental way that you are unable to articulate but that feels as natural and as constant as breathing, that whatever you and Lydia do or say or accomplish or become in life will never feel like it matters quite as much.

Only Idiots Smile All the Time

I start turning posts on Small World, the neighborhood site for people in search of local goods and services, into prose poems before Lydia moves in. The fact that I once wanted to be a writer is only part of why I develop this secret habit of making pretend poetry. The bigger part is a childlike desire for comfort. Little problems getting solved all day long—strangers in need, getting answers from strangers in the know—gives me hope. I grew up feeling like there was no one looking out for me when I felt lost or sad, so this allows me to believe otherwise. Helpers are out there. All I have to do is look for them.

Both of us are divorced and childless when she finally comes back to Boston from LA after almost thirty years. I say finally when I tell friends because, really, it was time already, wasn’t it? Lydia had moved away as soon as she graduated from college, leaving me alone with Louise and our sad family past, and a tiny part of me had been waiting for her to come back and make it up to me ever since. Not that I’d ever admit that to anyone. It’s such an infantile and entitled thing to say that I can’t even believe I said it right now. Sometimes I wonder if I’ll ever stop thinking that my sister should apologize for leaving me behind.

Especially since Lydia’s not even the one who owes me anything—she got as little as I did in terms of emotional support. If anyone owes both of us something, it’s our parents, but they’re both dead now, so it’s too late, and even if I allowed myself that equation—of being owed—it doesn’t seem fair to hold them accountable for payment. It never has. No one could blame them—two good people who had cared for a disabled child for almost ten years at home, then institutionalized her, then grieved when she died only a year later of the flu, of all things—for not giving us their full attention. How could they have? I never really expected Lydia to come back, because there was nothing much for her to come back for. Plus, she’s always done her own thing. Until now, that has never included me.