On why I hate D.C. subways

I am standing on a subway platform in Washington, D.C., and trying to figure out how, exactly, to get to the line I want to get to, and Jessica is vibrating with anxiety next to me.

“Do you know what you’re doing?”

“Does it look like I know what I’m doing?”

“Are we lost?” She sounds stricken, like I have stranded us on the far side of the moon, and she didn’t want to go along anyway, and now look.

“No,” I say. “I know where we are. I just don’t know how the hell to get to where we’re going.”

“That sounds lost.”

“Sometimes,” I say through gritted teeth, “it’s better if you’re quiet while I try to figure things out.”

I’m pacing this way and that, looking up at the overhead signs, then at the subway map in my hands. It shouldn’t be this hard. The subways in D.C. just aren’t; they are sort of like toy trains you set up around the Christmas tree. It’s not like finding your way through the rabbit warren of streets in Sultanahmet, old-town Istanbul, which I have done, only to be defeated by a simple below-ground grid with signs in English.

Tears are sparking in Jessica’s eyes, because she gets stressed when I’m impatient, and yet her stress does not magically render me calm or anything, so I find myself pivoting on my foot, looking at each sign in turn.

“We are here,” I say, stabbing at the map, “and we want to be there,” I make another stab, “which requires us to transfer to the blue line, but there is only the orange line here.” I gesture to the platform we are standing on. “But the map says we can get on the blue line here. So why can’t I find the goddamned blue line?”

“You could ask someone.”

“There is no one to ask!” My words echo against the subterranean concrete walls. “It’s just us! We are the only ones here!”

“You are lost.”

I notice that this time she has abandoned the we. Disassociating herself from me. She had nothing to do with this.

“Grr,” I say under my breath.

“I hate it when you do that.”

It’s a good thing we took this practice trip, I think, looking up at the signs, the tears sparking in my eyes now. Because obviously we are never going to go to Italy. It’s not supposed to be this hard. This is the simplest thing in the world, a subway in D.C., and I can’t do it right, and it wouldn’t matter if it were just me, I’d wander around for a while and figure something out. But she is humming with anxiety next to me, and it is throwing me off my game; it always does. I’m like a man: I can only do one thing at a time. I can’t soothe her emotional distress if I am also trying to find the damned train. If she could contribute something, for god’s sake, then maybe everything wouldn’t be so damned hard.

We have been upstairs and downstairs and this way and that and still cannot find the platform. And there is no one here to ask. And pretty soon she is going to have a meltdown, and so am I, and won’t that be a pleasant Sunday afternoon on vacation.

“What are we going to do?”

“Look,” I say. I am rattled, which I don’t normally get. Usually if something goes wrong, I sit down and have a cup of coffee. Jess gets a Diet Coke. We make a new plan. But I can’t even get that far today, I can’t even get to, well, let’s go outside and flag a taxi. My mind is frozen in where the hell is that platform??!?!?? and it will admit no other thought. This is why I need another adult, I think viciously, because when I get like this, someone needs to stop me. So, no, we are not going to Italy.

I don’t realize I have said this out loud until Jessica says, “Mom. I am almost grown up. And we just need to look at the map.” She looks over at me, determination on her face. Determination and disappointment; she wants to go to Italy.  “We are practicing, remember?”

“Fine,” I say. I have looked at the map ten thousand times, and I don’t care how much we practice, this is already a disaster and—

“That sign says we must go that way.”

“We have been that way,” I say, exasperated. “There is nothing over there but the escalator. We have been up the escalator. We have been down the escalator. There is nothing there!”

She gets a sly smile on her face, the secret smile that says she knows something I don’t know, and she drifts over to the escalator. I adjust the shoulder bag with a harumph and follow her.

We get to the escalators. “See?” I say, swallowing the I-told-you-so. “There is nothing here.”

She edges past the escalator. There is not much room between the wall of the escalator and the tracks, and she bumps a trash can, and I hiss in a breath. I know what she’s doing, she is playing Harry Potter the way she plays Lord of the Rings; the world is her game board. And Harry couldn’t find Platform 9 3/4, just as we can’t find the line we want, and what he had to do was just keep walking.

I’m assuming that we will find a blank wall back here, or perhaps a maintenance room, and then I will just burst into tears and go home.

And we get to the other side, and there is the stupid goddamned platform I have spent twenty minutes trying to find.

“Why the hell would you HIDE THE FREAKIN’ PLATFORM BEHIND THE GINORMOUS ESCALATORS?!!” I shriek loud enough for the transportation authority to hear.

Just then the train pulls in, and the doors ease open, and Jess looks over her shoulder at me, the sly, secret smile still in place.

She always does this! I think, stomping on the train. She thinks all you have to do is believe! All you have to do is be Harry Potter or Frodo, and everything will turn out all right! And then it does! And that just encourages her!

I throw myself onto a seat. She is sitting up, straight and proud, next to me. On the way to Hogwarts, I guess.

“You need to take a deep breath, Mom,” she says.

“What I need is to stop being so damned impatient.” I lean my head back, wondering why I ever left Kansas. I know how to find things in Kansas.

“That is just how you are made,” she says philosophically. “Give me the map.”

I surrender the map meekly.

She looks at it. “It is three stops to where we are going. I will tell you when it is time to get off the train.”

On how Jessica negotiates

“A practice trip,” I say to Jessica. “You think we need a practice trip before we decide about going to Italy.”  Jessica loves to travel, and she spots a possibility for getting two trips instead of one. I don’t like to say she’s devious and manipulative, because I don’t think she actually knows how to be either thing. But she is a child who can keep her eye on the main chance.

I don’t need a practice trip,” Jessica says. “You need a practice trip.”

She could be right. It’s been years since we’ve traveled anywhere more difficult than Disney World, and Disney World isn’t difficult at all. You just break out the checkbook.

“I’ll think about it,” I say, sounding exactly like my parents, a way I swore I’d never be, but what did I know.

“Mom,” she says, and gives me her Teenage Look.

A few days later, I am glancing through my calendar, and I realize that she has two days off school in October, and I haven’t planned any attendant care for her, which means I will have to take some time off work.

“We could go on our practice trip!” she says, when I tell her it’s too late for me to line up Reilly to hang out with her, and I can’t find anyone else on this short notice.

I think about it. If I have to take the time off work anyway, maybe we should go on a practice trip. Or maybe I should just get over my aversion to Disney and book our holiday trip there instead. Then I remember the bastards in Anaheim and get mad all over again. Disney isn’t getting any more money out of me until I stop being pissed every time I so much as think the word Disney. It may take a while.

I remember we have some Southwest vouchers to use on a domestic flight, and they expire before the end of the year.

“Hmm,” I say. “Where should we go?” I look up the Southwest route map. No, I do not care to go back to Anaheim. And I have no wish to go to Denver or to Dallas. “Baltimore,” I say. “You haven’t been to Washington, D.C. in years.”

“I’ve never been to Washington, D.C.”

“Well, you have,” I say. “You just don’t remember it. Do you know about D.C.?”

“We are studying the Constitution in social studies.”

“That’s cool.”

“And Thomas Jefferson and George Washington. George Washington was the first president.”

“That’s true.”

“And we are learning about the Continental Congress and the Declaration of Independence.”

“So maybe it would be kind of cool to go to D.C.?”

“That is where the White House is. And the Capitol.”

I am amazed that she knows all of this, that she remembered it for more than ten minutes after her teacher told her. It must hold a special fascination for her. It is a laborious process, for Jessica to remember something, and not have it shatter into fragments she cannot piece together. The world is constantly present to her, for there is so little of the past she can recall with any clarity, and I think maybe we should go to Washington after all, to give her something to hang the memories onto, so she can stand where the history she has so painstakingly memorized took place. I would like there to be some things that don’t shatter into pieces. Although it is true that the shards bother me much more than they have ever disturbed her.

“Also the Smithsonian,” I say.

“That is a museum.”

“Yes.”

One museum, Mom.”

She thinks museums are ridiculous, and I think it is because you are expected to look at things there, and she has never really cared about things, except perhaps her princess dolls, and the Lord of the Rings action figures. But even they aren’t things, but stories. I have tried to explain that that is what museums are, storehouses full of stories, but she never believes me. She would rather talk to people, and ask them impertinent questions, which they almost always answer, I don’t know why, and you’re not allowed to talk to people in museums. You are supposed to be quiet. This is very hard for Jessica.

“One museum,” I promise, and we both know I’m lying.

On practicing

“So are we going to Italy?” Jessica asks. “You said you would think about it.”

“I am thinking about it. But it seems like it could be really hard.”

“What will be hard about it?”

“Well, I don’t speak the language.”

“Mom. Sharon went to Italy and she doesn’t speak Italian.”

Yes, but she does not have a cognitively impaired teenager whose neurological condition can destabilize in no time, I do not say. But Jess will never be someone who is not cognitively impaired with a neurological condition that can destabilize in no time. It’s not like she has a broken leg, and it would be better if we wait until it was healed.

“You wandered around Turkey without speaking the language,” Randy says in exasperation when I mention this concern to her. But I was alone in Turkey, and the times when the police stopped me and demanded to see my passport and fired questions at me, questions I couldn’t understand, the consequences were mine alone.

“And Damiano is translating her medical records for you,” Randy  points out. “So it will be fine.” She says it in the way that means I need to shut up now, so I do.

That does not mean I have stopped worrying.

“I’m not sure about traveling overseas,” I say to Mary, the teacher for the blind who works with Jessica at school.

“Oh, I’ll get you a traveling cane,” she says in delight. “You can fold it up, which makes it easy to take on the plane.”

“Uh,” I say. “That wasn’t really my biggest concern.”

“It is so good that you take her to see the world!” Mary says. “All you have to do is practice.”

“How do we practice?”

“We go on a practice trip!” Jessica says.

On Italian translations

“Jessica wants to go to Italy for vacation,” I tell my friend Mary.

Italy?”

“I know. Maybe I can talk her into Key West or something.”

“You would love Italy. Italians are brusque but friendly.”

“Um, okay,” I say. Then: “Oh. You mean like me.”

“Exactly. You will fit right in.”

“Except I don’t speak Italian.”

She waves this off. “You’ll be doing touristy stuff, right? ’Cause you’ll be with Jess. All the tourism people speak English.”

“Right. And Jess has her . . . challenges.”

“It’s not a third-world country,” Mary points out. “They have hospitals. Get insurance that covers emergency transportation back to the States.”

“Sure, and I know how to say ‘she has tuberous sclerosis and a ventriculoperitoneal shunt’ in Italian.”

Mary waves a hand. “You know people.”

This is true. “Hmm,” I say. I call up Randy, who does translation work for multinationals. “Do you know someone who can translate the phrase ‘ventriculoperitoneal shunt’ into Italian?”

“Yes. Damiano. Why?”

“Because apparently I’m going to Italy. With Jessica.”

“With Jessica.”

“I know. Maybe not.”

“No, no, it’ll be fine. Italians like kids.”

“Jess is not like other kids.”

“She is better than other kids,” says Randy, which is why she is possibly the best friend ever. “You can reason with her.”

“Sometimes. Sometimes you can’t reason with her.”

“Well, sometimes we can’t reason with you. Human condition,” Randy points out. “And if you go to Italy, then you will have to fly to a big city to get there, and New York is a big city.”

New York is where Randy lives. We’ve been friends for years and have never actually met, and this would give us a chance.

“And who knows,” she adds. “Maybe you’ll meet a Paolo there. Wouldn’t you like to meet a Paolo?”

“Yes,” I say immediately. “If Paolo is a gorgeous man who wants to have a fling with a middle-aged woman, I’m in.”

On what Italy has to do with Disney princesses

To understand how Jessica managed to wrap me around her little finger and convince me that we should travel to Italy, you first have to understand how much she loves Disney World. That began because she loves Disney movies, which begat an unfortunate fascination with Disney princesses (“Sweetie, I’ve just been asked to work on a book called Princess Recovery. Do you think we could like American Girl dolls for a little while?” “No.”)

And it is Disney princesses she loves, not Barbie dressed up like a princess or any other fakers: Disney princesses in crowns. Princess Jasmine in a crown, to be absolutely precise, but any of the others will do in a pinch, whether from the major arcana (Cinderella, Aurora, Tiana) or the minor (Pocahontas, Mulan).

She likes princes, too, but to a lesser extent and they seem to be accessories, sort of like a handbag or a pair of shoes; a thing a princess happens to come with. The princes usually get tucked on a shelf somewhere. It is the princesses who go on adventures (“I let the princesses out of the castle! And now they are free!”) and return safely home each day (“because the castle is very nice”). They share her messenger bag when she goes anywhere, and sleep on the other pillow.

In the fall that Jessica turned twelve, a colleague invited me to participate in a writers’ conference that was taking place on a cruise, and told me to bring Jess along.  Since Jess and I hadn’t had a vacation in several years, I agreed. And then it occurred to me that Disney World is not that far from the port, and I asked the travel agent how expensive it would be to add a few days there to the end of the trip. And said travel agent happened to mention that you could actually have breakfast with the princesses, the real Disney princesses, including Jasmine, and I knew I would have to dig all the change out of the sofa in order to make this happen for Jessica.

And so I did, and it was everything it was supposed to be: magical, and relaxing, and with princesses, and also crowns. In fact, it was such a spectacular hit that it became our default destination whenever we had some time and money. It is easy: once you get on your plane and check your bags, you pretty much don’t have to do anything else. Someone picks you up from the airport and brings you to your hotel and delivers your bags. Busses and monorails and boats whisk you from your hotel to the theme parks. Someone else makes dinner and cleans the room. And you can have breakfast with the princesses in the castle, and have them sign an autograph book, and you can get your picture with them. And throughout the day you can also stand in line and meet the princesses who aren’t currently having breakfast in the castle. So mostly when we go to Disney we meet princesses. This makes Jessica deliriously happy, and there is sometimes so little light in her life that I will do almost anything to see her smile like that.

Spending my vacation days standing in line to meet princesses is fine with me. I don’t ask for my time off to be anything other than an opportunity to stop working for five minutes. And at Disney World, the cast members are well-trained in connecting with children like Jessica, and most people are good-natured when we stand in the line and Jessica asks them their names and where they are from and what is their favorite princess.

And then we made the terrible mistake of going to Disneyland for Jessica’s birthday last year. This is Walt’s park, and it came first, and of course we should give it a try at least once. And it was a total, unmitigated disaster. Everything was complicated. There was certainly no one there to pick you up from the airport and help you juggle the anxious kid and the two suitcases. There was no simple way to get from the hotel to the park. Cast members acted like they’d never heard of making a dining reservation or giving a direction for how to get somewhere. Everything was broken and dirty. I put up with surly and impatient workers, but then a cast member was an insulting jackass to Jessica (and me) – and when I say “insulting jackass” I mean ranting and raving, the kind of thing you wouldn’t do to your ex-husband, let alone a harmless kid and her middle-aged mom trying to have a vacation. So that was it. I threw our remaining tickets away and took Jessica to Catalina Island.

I was so shaken and upset over this that I swore I would never go back to any Disney property – not even harmless Disney World, which had never done anything wrong – and I discarded the outline of my book on how to bring children with challenges to Disney. I would never want any parent or child to be treated the way we were, and if anyone asks, I will always tell them that they may enjoy Disney World but they sure as hell need to skip Disneyland.

And that is how we ended up talking about Italy. When Jessica asked if we could go somewhere for Christmas, I was still smarting over the nastiness at Disney and refused to bring her there. But I had no alternative in mind at all. Everything seemed so much harder – and we’d be doing it overseas! Where I didn’t speak the language. It seemed like just another disaster waiting to happen.

Travels with Jessica, Take Two

A while back I had the great idea that I would start writing about how to travel with special needs children because I think that not only do our children need to see that world, but that the world needs to see our children.

However, this turned out to be uninspiring (to me) because the logistics are just as ho-hum as logistics ever are, and (frankly) the only time I write when I feel uninspired by the topic is if someone pays me enough. And I’m not paying me enough.

So I put the idea on the back burner. Then something happened. While Jessica and I were on our most recent trip, I kept a journal, which we wrote in every night, and she kept asking when I would put the entries up on the blog, and so I thought, well, you guys only read the Jessica stories anyway, so what if I just told the stories about travel that way? What if they were just Jessica stories?

It started when Jessica asked if we could go somewhere for Christmas vacation last year. The previous year, we had gone to Disney World, and in Jessica’s opinion, if you do something once and you like it, it is now a tradition, and one must always honor tradition.

“Well,”  I say, “where would you like to go?” I am always willing to leave Kansas in the middle of winter. “Not Disney. I love Disney but not another Disney trip right now.”

“I was not going to say Disney!” she claims. “I want to go to New York.”

“New York?” I say. “But it will be winter in New York. Can’t we go somewhere warm?”

“Will it be warm in Italy?”

Italy?” I have never mentioned Italy as a destination to her, I have never been overseas with her (if you don’t count that time in Nassau), I have no idea where this came from. I look at her, perplexed. “Italy?”

“I would like to go to Italy,” she says, and she looks up at me with the big brown eyes (not the big brown eyes!) and I think of what she has been through, and I think of all the years she may not have, and what is the point of waiting on Italy until I’m seventy, and crankier than I already am, and she is gone? I’ll have a great time then, won’t I?

“Italy,” I say, trying it out. What about Paris, or London, or Shanghai? Why Italy? And why now? And how much does Italy even cost? “Let me look at the budget. I don’t know. That’s a big trip.”

“But you have a job,” she says. Normally she hates the job because I spend so much time at it. “You have a job so we can keep this roof over our heads and pay for the gasoline in the car and the groceries on the table.” I wince at the litany I have repeated to her a time or two in response to her complaints. “And you have a job so we can do the things we want to do. And this is a thing we want to do.”

“Well. You want to do it.”

“Mom. You want to do it, too. You really do.”

She means if I would just let myself want something.

“Maybe.” I am thinking of the Spanish Steps. I have never seen the Spanish Steps though I have always wanted to. I don’t know why. I read about them in a story once, and they seemed exotic and romantic to me. And it stuck in my head as a thing I wish I could do, but never had a reason to. I think of how often I only do things if I have a reason, a good one.

“We will get a book,” she says, because she knows the art of persuading me. “We will do that first.”

“All right,” I say. What’s the harm in a book?

“And then you will know.”

“What will I know?”

“That we are going to Italy.”