Travels with Sophie

posted Thursday July 16th, 2015


Turns out, Sophie was born to travel.

She doesn’t get car sick, has no anxiety about flying, can sleep just about anywhere, and while she doesn’t pack light, her things are so small they never take up much space. She is pretty easy to feed as long as there’s bread, rice or some form of noodle on the menu; all she really wants is a to-go cup with a lid, preferably filled with cranberry juice but she’ll compromise.

And she loves hotels. Most of all, Sophie loves the front desk clerks at hotels. Maybe she’s got it in her blood (until recently, my family on my father’s side ran a hotel) or maybe it’s just because she is at her best with a captive audience.

She charmed so many staff members so quickly at the Ace Hotel in Portland a few weeks ago that by the time we checked into our room, there was a handwritten postcard and salt water taffy waiting for Sophie, wishing her a fun time. Later, a clerk overheard me admonishing Sophie for trying to score another free toothbrush and reached around me, silently handing her one. Without being asked, the bell boy produced a cardboard envelope to hold Sophie’s photo booth loot. It was out of control, in the best ways.

Then we got to San Francisco. Sitting in the lobby of the Hotel Triton, watching a young hotel employee teach Sophie to hula hoop, I started thinking about how we could make this a lifestyle. By the time that clerk had returned from the drug store with a coloring book and crayons for Sophie (no kidding and yes, I gave him a giant tip), I had an idea.

We should start a blog, call it Travels with Sophie, and make it all about her adventures — dancing in Jackson Square in New Orleans, walking Goofy down Main Street at Disneyland, doing the splits for President Obama in front of the White House. It would be great! Because Sophie is at her most awesome when she’s out in the world, soaking it up and letting it soak her up, too.

The next day we woke up and took a trolley to the Castro, wandered through the most incredible variety store (Cliff’s) I’ve ever seen, and stopped at a restaurant for lunch. Ray wasn’t with us in Portland, we’d joined up the day before in San Francisco, and he wasn’t as into Sophie’s super-friendly ways as I was.

Now I must pause to say that I totally get that. Sophie can overstay her welcome, and more important, there are some Stranger Danger and general etiquette lessons to be taught. So I don’t blame Ray for scolding Sophie gently after she’d asked the waitress what might have been her fiftieth question. And I didn’t think much of it as we all proceeded to finish our lunch.

A few minutes later, we’d paid the check and I took Sophie to the bathroom. I was still humming away, thinking about our future travels, high on vacation, when Sophie asked me, “Hey Mom, will I have Down syndrome my whole life?”

I felt my mood shrivel up and drift away, like a popped balloon.

“Yes, you will.”

“I don’t want to have Down syndrome.”

I didn’t know what to say, so I hugged her. It wasn’t the first time she’d told me she didn’t want to have DS, but it had been a while. Every day, it seems, I get more comfortable with the fact that she has it; not so for Sophie, apparently.

We walked out of the bathroom and Sophie picked up where she’d left off with the waitress, comparing notes on favorite TV shows, and we met up outside with Ray and Annabelle. The rest of the trip was filled with candy-making, browsing in Chinatown, walking (part of) the Golden Gate Bridge, then driving to LA, where Sophie charmed another set of clerks, securing free books from the hotel library and eliciting whispers of “Look at her! She’s so cute!”

And she was, strutting through the hotel lobby in one of her several wardrobe changes of the day, free from school dress codes, hard tests and unfriendly junior high peers. But not free from Down syndrome. That goes with her wherever Sophie goes.

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Tags: Filed under: Down syndrome by Amysilverman

9 Responses to “Travels with Sophie”

  1. so great! though the next time you’re in PDX (and so very close to my office!), I hope we can get together for a drink… or so I can hand Sophie a toothbrush, too.

  2. I’m very curious as to any thoughts you might have regarding why she wishes she didn’t have Ds? I know some social stuff has been tough for her…do you think she attributes that to Ds? I assume you’re not constantly telling her about things she may *not* be able to do so it’s just really interesting to think about how she feels Ds holds her back (or makes her stand out, or whatever it is). Anyway, I love the thought of Travels with Sophie, and I hope that she – and the world at large – continue to enjoy that for years to come.

  3. I would love to read about how Sophie views her travels and experiences next to yours. I think it would be eye opening just as your writings are.

  4. I wonder if she thinks about it the same way I think about blackheads or curly hair or any number of traits, or if it’s something more deep to her?

  5. When I first got into GIAPH, near its beginning, Sophie’s mom was generally, for lack of a better term, fretting, and wondering where this DS journey would go, or even fail.

    This episode reveals that we’ve all “come a long way, Baby.” We don’t necessarily LIKE it, but it’s gonna work.

    You have a great ministry here, Amy.

  6. Sometime, if you ever want to come to the annual Skihawks picnic, the last Sunday in June, let me know in advance. Sophie can meet some Awesome adults with DS!!!

  7. I think it’s more deep. And I think it has a lot to do with not being able to do what AB does.

  8. I will ask her to write a guest post! She loves to and hasn’t for a while…. Thanks for the suggestion. :)

  9. Thanks for the questions — I ask them, too. No, we don’t tell her she can’t do stuff. Sometimes I wonder if it’s because she’s mainstreamed so much that she gets frustrated, feeling like she can’t keep up. Most definitely a lot of it is because she wants to do what her sister does. I haven’t asked her but watching her navigate life sometimes it feels like Sophie is doing the same things we’re doing but inside a vat of jello — does that make sense? That something she doesn’t really understand (because it’s hard I think for any of us to get our arms around a chromosomal defect and the implications) is making everything just a little more difficult for her. And some things a lot more difficult. And I think that tweens and teens want to blend in, not be different, and she knows DS makes her different. I don’t ask her about this stuff a lot, I let her bring it up and that happens but rarely. I don’t want to dwell on it…. So I’m really not sure.

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