“Hey,” I say. Tilly doesn’t say anything except, “Finally, we can get out.”
“Are we the first ones here?” my mom asks.
“You are indeed,” says Scott, stepping back so she can get out. “The Ruffins are arriving tomorrow; the Goughs were supposed to be here already, but I got a message from Rick that they had some car trouble in Connecticut, and they’re running behind.”
The rest of us have gotten out by now, and we’re all just stretching and looking around. We’re standing in a circular driveway, made out of gray pebbles. Behind us, there’s a row of little cottages, painted different colors, and in front of us there’s a big patch of grass with a couple of buildings, and a path leading down to the lake. It’s pretty, I guess, but everything feels sort of run-down and empty.
I think that when Tilly gets out of the car, it finally occurs to her what a big deal this is. “This is it?” she asks. “This is where we’re actually going to be living?”
Scott’s just finishing up hugging my mom and shaking my dad’s hand, and now he crouches down between me and Tilly and puts an arm around each of us.
“Girls,” he says, in a low voice. My mom and dad can probably hear what he’s saying, but it’s supposed to seem like it’s just for us. “Don’t worry, okay? I know this feels crazy and huge, but I promise: it’s going to be great.”
Then he just stays where he is, looking between the two of us, like he’s waiting for an answer. I sort of nod and shrug; Tilly shakes him off and starts walking around in circles, tapping her cheeks really fast, like she does when she gets anxious.
“No,” she says. She stops in front of my parents and grabs hold of Mom’s shoulders. I can see my mom sag a little bit from the weight Tilly’s putting on her. “I’m not going to live here. Take me home.”
My mom doesn’t answer, just gently disentangles herself. “So which one of these is ours?” she asks Scott, gesturing to the row of colorful cabins.
“None of them, actually,” Scott says. “These are the visitor cabins. Come with me, and I’ll show you the staff campground.”
We follow him down a little dirt path that curves behind the dollhouse cabins and goes back into the woods. Tilly’s still tapping her cheeks, but she comes along without saying anything. We walk a ways, and then a second group of buildings comes into view. They’re the same size as the others, but less cute and more run-down. They’re all painted the same color, a kind of dull green that makes them blend into the trees.
“You folks are in Number Five,” Scott says, pointing to the one on the end. It’s got a tiny front porch with two canvas chairs on it, and a white door right in the middle. I swear the whole thing is smaller than the jungle gym at my old school.
“Perfect,” my mom says. “Do we need a key?”
“Nope,” says Scott. “No keys here. We’re an open-door community.”
“Oh, of course,” my mom says. “I’m still in city detox.”
“I’ll go get some of the bags,” my dad says to my mom and turns back the way we came. My mom walks up onto the cabin porch and opens the door. Tilly stops in the doorway, and I stand behind her, waiting to get inside.
“You just get yourselves settled,” Scott calls from outside. “I’m in Number One, if you need anything.”
I nudge Tilly. “He’s in Number One,” I say quietly, nudging her into the cabin. “He lives in pee.”
Tilly still looks upset, but her face twists almost into a smile. “I’m glad we’re not in Number Two,” she says.
Right inside the front door is a big room that’s half kitchen and half living room. On one side, there’s a white plastic table and chairs, and running along the wall, there’s a refrigerator, a sink, and a counter with some stove burners built in. There are cupboards, but they don’t have any doors, and neither does the space underneath the sink; they’re just covered with dirty yellow-and-white-checked curtains.
On the other half of the room, there’s a couch and two armchairs arranged around a coffee table. The furniture is old and ugly, and none of it matches. There are three doors, leading to a bathroom and two bedrooms. The whole place feels grungy, like it couldn’t get clean no matter how hard we try.
“This sucks,” I say. I’m getting really nervous all of a sudden, which is silly because nothing’s happened, but maybe it’s been building up. Like we were all so focused on getting here, and now we actually are. Here. So . . . now what?
“It really sucks,” I say, louder. I feel like I’m filling up with some kind of thick, horrible substance. I picture it like the disgusting yellow goo my dad used one time to fill the spaces between the bathtub and the wall in our old house: it’s called caulk, which Tilly would probably think is funny because it sounds like “cock,” but right now, I’m not even thinking about that, I’m just picturing this gross, gluey stuff, ugly and poisonous, expanding to fit the inside-shape of my body, spreading through me and hardening as it seeps into every little crevice.
There’s a thump as Tilly finally lets the screen door swing shut. She walks in, and I can tell by the look on her face that she’s about to go over the edge. For some reason that makes me furious. I make a deep growling noise and punch the dirty, shiny sofa, to keep from punching her.
“I’m not living here,” she says, her voice rising to a wail. She lunges at my mother, maybe to hit her, maybe to bite her, and my mom grabs her upper arms to keep her away. “I want my Xbox. I want my computer.” She’s screaming now. “I’ll kill you if you don’t give me my computer.” I go into the bathroom and slam the door.
We’re here for Tilly; she’s the whole reason we gave up everything and moved here, even though nobody’s saying it. But I can make a scene, too. “Fuck,” I yell. Then louder, in case they didn’t hear me: “Fuck!”
While I’m peeing, I check out the bathroom. There’s no bathtub, just a nasty-looking shower stall. There are rust marks in the sink, and the blue plastic shower curtain is spattered with uneven white dots along its bottom edge. The toilet flushes with one of those sticks that you step on, like it’s a public restroom. I wonder how many feet have stood on that dirty-white plastic shower platform, sending dirt and hair and who knows what else down the drain. How many mouths have spit into that sink? I feel like throwing up.
When I come out, my mom and Tilly are sitting on the couch. Tilly is crying in long soft moans, and my mom is trying to put an arm around her, but it’s hard because Tilly keeps jerking her body around. My mom looks at me over Tilly’s head and smiles in this sad way. She wants me to be more mature, to be the big sister even though I’m the little sister, but I’m not going to do it. I stand there hating them both for a minute, hating hating hating everything, and then it’s like the hard yellow stuff melts back into liquid, and I’m crying like I’m never going to stop. My mom holds out her other arm, and I sink down next to her and press my face to her shoulder. I let her hold on to me and whisper soft things to both of us, as if it could make even the tiniest bit of difference.
chapter 2
Alexandra
March 2007: Washington, DC
You open the basement door, feeling as if you’re setting out on an arctic expedition. It’s your job to go down there and sort through the chaos. It’s your job to find clothes for your family. All of your laundry is in garbage bags; you have bedbugs, and the first step in containing the infestation has been to seal up every item of clothing you own. Blankets, too, and stuffed animals—anything with a soft surface. Dirty items have to be washed and dried; clean ones just have to go through the dryer, where the heat is high enough to kill the bugs.
When the man from the pest control company came, he got down on the floor next to the couch and ripped open a side panel, pulling the fabric away from the board underneath. “Yeah,” he said, pointing without touching. “See this, here?” You bent your head close and squinted until you saw a cluster of tiny brown sp
ecks. “That’s their feces.”
He was very well informed, this guy; he was a font of fascinating bedbug trivia. “White people tend to be sensitive to it, so we’re able to catch it early,” he told you; he was black, which somehow made it seem more okay for him to be saying these things. “Hispanics, it doesn’t bother them till it gets really bad. I go in there, and I find the bugs in the wall sconces, in the closets, everywhere. By the time they call me, you can see the bugs with the naked eye.” You glanced at Tilly, who was listening with interest, quiet for once, no doubt filing this away in some confusing, overstuffed “race” folder in her head.
Your best guess is that you brought the bugs home from a hotel where you stayed last Thanksgiving. A nice place, apparently clean. The kids loved the free breakfast buffet. It’s like a metaphor come to life, your home polluted with invaders you can’t even see. And what if—you suppose that this is the real source of anxiety for most people—what if the invasion goes even deeper than that? You’ve been to the fringe parenting websites and the homeopathy section at Whole Foods. You know that there are people out there who will tell you that it’s too late, that our bodies are already tainted. That we’re overrun with mucus or bacteria or spreading fungal growth. You picture a garden gone to seed: moss growing on the surface of our spleens, vines squeezing our kidneys. Tiny mushrooms spreading across the linings of our intestines. Kudzu, unstoppable, choking us from the inside. Has depression ever been this widespread, or autism or infertility or food allergies? Something’s changed, even if it’s just our own method of record-keeping. Impossible to say what might be causing what.
You’ve been thinking about this a lot during this dismal spring. So far, the year’s key events—the ones you grimly imagine decorating with exclamation points and inserting into your next Christmas card letter—are the bedbug colonization and the new diagnosis you’ve received for Tilly. You’ve had a few false starts: OCD, ADHD, an autoimmune disorder called PANDAS (which you think about almost nostalgically every time you take the kids to see Mei Xiang and Tian Tian at the zoo). But in early February, you finally made it to the top of the waiting list of a highly recommended developmental pediatrician, and the diagnosis she bestowed on Tilly carries a weight that the others didn’t. The new set of letters, the acronym you attach to your daughter like a degree she’s earned, is PDD-NOS. It stands for “pervasive developmental disorder, not otherwise specified,” and it doesn’t actually mean a whole lot; it’s a diagnosis of exclusion, nothing more than the doctors throwing up their hands and saying, “Something’s going on here, but we can’t say exactly what.” But it’s located firmly on the autism spectrum, and it has the effect of shifting all the pieces on the game-board, sliding Tilly into an entirely new position. And you’re still trying to figure out what kind of endgame it might lead you to.
You tug at the knot on a bag of Iris’s clothes—finally, it’s occurred to you to use clear plastic bags, which makes it easier to find things. As you rummage, you’re careful not to put any of the clean clothing down on any surface; the pest control people haven’t done their second spray yet, and who knows where the parasites may still be lurking. “It’s all safe for humans,” the man had said about the chemicals, the man who seemed to know everything about bugs and their habits. “Humans and pets are fine.” But you don’t believe it for a minute.
When you were pregnant with Tilly, you subscribed to an online pregnancy calendar. Each morning, you’d turn on your computer and learn which organs were likely to be forming today, which cells might be fusing even as you sat there at your desk. You’d send Josh emails about it at work: “This week: the brain stem! What should I eat?” But it was a joke, because it was all going to be okay. You didn’t actually believe it could matter much; women have been doing this forever, right, without this kind of second-by-second scrutiny?
May 3, 1999: Matilda Grace comes into the world at 7:25 p.m. Pregnancy and birth normal, although later you’ll wonder whether that’s true. You’ll struggle to remember details that seemed inconsequential at the time: Did you drink tap water? Did you eat any fish that might have contained high levels of mercury? Having a baby is something that never changes, has never changed in the history of the world, and also something that changes all the time. The advice you got from doctors and baby-care manuals was cutting-edge and up-to-date; it was also completely different from the advice Josh’s older sister had gotten five years earlier and the advice younger friends were given five years later.
You know that when you were a baby, you were put to sleep on your tummy, like most babies of your generation. It was thought to be safer, to prevent choking if you spit up while you were unattended. Your nephew, born in 1995, was placed to sleep on his side, an ungainly position for an infant and one that required a foam crib insert, to keep him from toppling one way or the other. By the time Tilly was born, it was imperative that you lay her down on her back. No pillows or blankets, though swaddling was encouraged; no soft toys that have button eyes or pom-pom noses. And you suppose it worked; neither of your babies died from SIDS. But who knows what they’ll be told, Tilly and Iris, when it’s their turn to bend over a cradle and place a wriggling baby down to sleep. (Did you color your hair while you were pregnant? Did you take any over-the-counter medications?)
By the time you were ready to get rid of the crib that held each of your babies safely for two years apiece, the mechanism that moved the side up and down had already been rejected as too dangerous. You couldn’t get any charity to take it, or any pregnant friend; you were advised to break it into pieces before putting it out for bulk trash collection, so that it couldn’t be appropriated by a passerby and used for some new baby who might not survive its outdated design. (How well did you wash your fruits and vegetables? How much coffee did you drink?)
If you look at the long history of women having babies, there is no right or wrong; there is no universal truth. You think about women in the nineteenth century, told that if they should happen to gaze upon anything gruesome or horrifying, their babies would be born deformed. Of course, that’s ridiculous—right? (Did you eat soft cheeses or sushi? Do you have lead fillings in your teeth?) Now, with more than a century of extra wisdom and confusion under your belt, you’re not so sure anything can be ruled out. A crisis of faith doesn’t have to be about God. You can have a crisis of faith about dust mites and food additives that cause behavioral changes. Pesticides in fruit salad and insect husks in peanut butter. Mysterious rashes caused by something you brought home in a suitcase.
There’s a startling fact that you read somewhere: after airbags became standard in cars, statisticians noticed that the incidence of severe leg injuries increased dramatically. Think about it for a minute: Why should that be? Is there something about the way airbags inflate during collision that targets the passengers’ legs, makes them more vulnerable?
No. It’s a matter of checks and balances. Before airbags, there were certain accidents that would have killed you; you’d be a corpse in the morgue, and no one would be paying any attention to your legs. When we change the way we do things—the way we shop for groceries or take care of our children or protect ourselves from harm—we set other changes in motion, for good or for ill. And it may be years before we figure out what we’ve done.
You cried in the parking lot of the doctor’s office, after that last meeting with the developmental pediatrician, the one where she broke her news so gently and so kindly. And you continued to cry off and on for weeks. You grieve; that’s the conventional wisdom. You grieve for the child you thought you were going to have, though maybe it’s also for the parent you thought you’d be. But soon—or so you keep hearing—you’ll find that having an answer provides some measure of relief. Because now you understand why she acts the way she does. You understand that some problems are neither your fault nor hers.
You can begin to educate yourself; it’s hard to use Google if you don’t have the proper search ter
ms. You can learn what kind of help your child needs, and you can find other people in the same boat. Eventually, you’ll feel less alone. A diagnosis, the conventional wisdom goes, is a beginning, rather than an end.
You’re not quite there yet, though, to that place of clarity and relief. Now that you have the all-important label, the letters that will make your daughter eligible for the ominous-sounding set of benefits known as “services”—OT and PT and plain old T—now that you’ve gotten an answer that’s supposed to be definitive, what are you supposed to do about it? There doesn’t seem to be much of a consensus.
Just one more week until the pest control people come to finish their treatment, and then all this will be over. The day they come to spray, you’ll stay in a hotel, just like you did the first time. It’s money through your fingers and not fun for anyone—the four of you crammed into one room, waking up in strange beds on a school day. But it’s better than putting your kids down for the night on mattresses still damp with pesticides. Better than bringing them home before you’ve had a chance to sweep up the white powder that settles on the floor as the toxic mist dries in the air.
You collect pieces of clothing, keeping track as you go: underwear for yourself, a shirt for Tilly. Denim legs twirled in the corners of bedsheets, spun tight by the movements of the dryer. You pull like you’re playing tug-of-war at a picnic.
Josh’s clothes are in here, too, mixed in with the rest, but you don’t take any of them out for him. He can find his own. There was a time, you remember with some astonishment, when you used to do nice things for him on purpose. It’s sad, and maybe you’ll reach that point again someday, but it’s not going to be now. You have a feeling of plague and panic, like you’re living through the black death or the influenza epidemic of 1918. In plague days, you’re learning, it’s every man for himself.
“I am,” you think, and “I want.” And you have no idea how either sentence ends.
Harmony Page 2