Travels with Jessica

By Jennifer Lawler

Of all the things I thought I might find myself asking someday, the question “Do you know anyone who can translate the phrase ‘ventriculoperitoneal shunt’ into Italian?” is not one of them.

I have always wanted to travel the world, but when my daughter Jessica was born with a debilitating medical condition that left her physically and mentally impaired, I thought any chance of eating risotto in Verona was gone.

But Jessica taught me to think bigger than “that will be hard.” And one day she talked me into following my dreams. This is the story of our travels.

• Language: English
• Publisher: Jennifer Lawler
• Release date: Nov 19, 2013
• ISBN: 9781940480039

Jennifer Lawler

Jennifer Lawler is the author or coauthor of more than forty fiction and nonfiction books. She writes about editing at www.ClubEdFreelancers.com

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Introduction

From the moment my daughter Jessica was born, everything I thought about how my life would be changed. As an infant, she was diagnosed with a rare neurological disorder called tuberous sclerosis, a disease that left her with crippling seizures and harmed her brain so badly that her cognitive impairment is significant.

Because it is a medical condition as well as an intellectual disability, she spent long weeks in the hospital as a baby and a toddler, and even now, as a teenager, she spends too much time in operating rooms and intensive care units.

When I was pregnant, my friends who were parents would say cheerful things like, We decided not to let our daughter change our lives. We taught her how to adapt to the way we live instead of adapting our lives to suit her!

That only works if you have a typical child. Even then I have my doubts. If you have a special needs child, your life has to change. You can’t do it otherwise, and you just cause everyone a lot of pain and heartache if you try.

But there comes a time when you realize that there are things you want to do, and if you want to do them, you’re going to have to figure out how, whether that means making the world adapt to your child or your child adapt to the world.

For me, that time came when Jessica was diagnosed with a degenerative spinal cord disorder, the kind that makes the nurse ask if she’s on a home ventilator when you call for an appointment. I don’t know what the future holds, but I can see that the time for pursuing dreams is a window that can close.

I had always wanted to travel with Jessica to someplace other than Walt Disney World because there is a huge world out there and I’ve only seen part of it, but the idea of traveling with Jessica was also complicated. There are the things she doesn’t understand about the world, and the things the world doesn’t understand about her, and there are the times I stand there completely unable to mediate the difference and wonder what made me think I could.

So this is the story of how we started traveling the world, and what traveling with Jessica taught me about her and the world and myself.

Part I

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 Walt 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 of the 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. They seem to be accessories, sort of like a handbag or a pair of shoes; a thing a princess happens to come equipped 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 evening (because the castle is very nice). They share her messenger bag when she goes anywhere, and sleep on the other pillow in her bed.

In the fall of the year 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.

Then it occurred to me that Disney World was 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 Disney World became our default destination whenever we had some time and money.

It’s 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 ask them to 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.

At Disney World, the cast members are well-trained in connecting with children like Jessica, and most of the other guests are good-natured when we stand in the line and Jessica asks them their names and where they are from and who is their favorite princess.

Then one year we made the terrible mistake of going to Disneyland for Jessica’s birthday. This is Walt’s park, and it came first, and of course we thought 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). So that was it. I threw our remaining tickets away and took Jessica to Catalina Island.

In 2011, around the time of her fourteenth birthday, Jessica wanted to know if we could go somewhere special for our next vacation. The conversation went something like this:

Where would you like to go? I ask. Not Disney. I love Disney but I’m not ready for 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 out of the country with her (if you don’t count that time the writers’ conference cruise ship stopped 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.

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