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“I’ll take my hot chocolate without the sacrificial blood, thanks.” The Conclusion of the Guatemala trip.

Continued from Five Nights in Antigua, Guatemala and What to Do in Antigua, Guatemala.

After an afternoon of exploring ruins, we got ready for the wedding which was held at the Porta Hotel in Antigua. Lili faced a major challenge in that she wanted a Catholic ceremony, but it was not being held in a church. Locating a priest that would perform it proved to be a challenge. Everything else was already in place and she had purchased a dress more than a year before, but she explained to me that in Guatemala it is considered strange to wear the wedding gown if you have a civil ceremony, rather than religious. Fortunately an old family friend turned priest was able to perform the ceremony.

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The next morning we miraculously rose early considering each table came equipped with bottles of rum and whisky. Semana Santa, or Holy Week, was approaching and we had learned that in the weeks leading up to it — Lent — there were processions on Sundays.

I had experienced Semana Santa in Spain several years ago. The processions were interesting, but after a solid week of trying to navigate around them to get anywhere in Sevilla (I was taking language courses for a couple months) it was wearing thin. I know I shouldn’t complain about getting first hand experience with an incredible cultural experience, but I need clear access to Zara and Promod at all times. Don’t you judge me! I was also late to class.

Our experience in Guatemala worked out perfectly. The insanity and deluge of Guatemalans and tourists from all over had not yet arrived in Antigua, but we still got to see the Catholic celebration. In fact, we got to see something even better — the preparations. The streets are prepared with beautiful alfombras, or carpets, of sawdust, flowers and pine straw before the processions arrive with the heavy floats carried on the shoulders of the men, or cucuruchos, who have been selected for this honor. Women in the procession are called Las Dolorosas.

From the cutting of flowers to the watering of pine straw to the use of power tools  and stencils to lay colorful sawdust, it was incredible to see hours of work, faith and dedication put into making something beautiful that would be trampled out of existence when the procession passed by.

If you’ve been bypassing my other photo galleries, please look through this one. Photos don’t do it justice, but it was really incredible.

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Chris and I had lunch at La Antigua Vineria. The pizza was delish and  authentic. To add to the ambience was a man — owner maybe? — watching an Italian news channel. Chris wasn’t able to enjoy it so much as his stomach was a little off.

IMG_4467We returned to the hotel so he could rest while I drank coffee and read. We ate dinner at the hotel again that night — this time with reservations so we were able to be seated outside.

Chris still wasn’t feeling great so he struggled to enjoy his risotto.

But we did have a lovely view of the small lap pool.

Asian pork ribs with soy sauce, ginger, star anise and sweet potato.
Asian pork ribs with soy sauce, ginger, star anise and sweet potato.

I wondered whether anyone ever really swam in it. Though pretty, it was literally a lap pool. Tables sat alongside it and a sign requested that guests refrain from swimming during restaurant hours.  For my amusement, I considered swimming laps like an Olympic swimmer as it would inevitably lead to diners being splashed.

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IMG_4475Chris’s stomach issues did not improve during the night. Just the opposite. I was on my own the next day for the chocolate tour at Choco Museo. I participated in the chocolate making workshop which takes you through the history of chocolate in Guatemala and the chocolate making process.

The first thing we made was chocolate tea from the shells of the cacao beans. Then we made spicy and bitter hot chocolate as the Mayans would have — sort of. They would actually put blood in it. I was taking the class with another couple and when the teacher asked the husband to prick his finger, she was so deadpan, I actually had a moment of panic in which I actually questioned the possibility that I wasn’t going to get any hot chocolate because some dude from Massachusetts was going to have to donate DNA. My chocolate lust has often been known to cloud my judgment and  sense of reality. Instead we just used chili powder. We also stirred as the Mayans would have, pouring from jug to jug. One more thing I lack the coordination for as you can see from the progression of these photos.

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IMG_4510Next we made hot chocolate as the Europeans adapted it — meaning sweeter. And we ended by making our own chocolates to take home. While my chocolates cooled and hardened in the fridge, I walked back to the hotel to check on Chris. He wasn’t much IMG_4511interested in getting out of bed, so I got some coffee and read a book on the patio until it was time to wander back into town and collect my chocolates. I did some last-day gift shopping as well, including a colorful hand-made wooden mixer truck for Connor.

I made one last sweep through the markets before grabbing some lunch at a Korean joint. Yes, I ate Korean while in Guatemala. What can I say? I didn’t plan it — it just popped up in front of me.

Who can say no to bibimbap?
Who can say no to bibimbap?

As we left Antigua the next morning we saw our first clear shot of the volcano hovering above the town. It had been surrounded by clouds until that point, but the sun finally burned through. And then it was gone out of sight, our quest to get a picture unfulfilled.

We arrived at the airport only for me to become enraged that I was unable to take my big bag of tamales, chuchitos and salsa with me. In ‘Murica our signs just say no guns or explosives.

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I burned through the last of our quetzales shoveling airport-hocked handicrafts into my bag.

Our final Guatemalan adventure was at takeoff. Just as the plane was nearly completely boarded, it was announced we had to get off as the airport had closed. This immediately triggered my anxiety. Airports don’t just close. Clearly there was a security issue and of course I was thinking of terrorism. Everyone began to file off and the flight attendants — who look nothing like the dolls Delta hocks —

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were clearly unsure how to proceed. They began checking boarding passes, then taking them, then returning them and checking them again. We were alerted that the airport had closed due to a security issue on the other side. Someone somewhere made the call that our flight could go, but it had to be ASAP or we would be stuck. So everyone filed back on and we were cleared for takeoff. This is the kind of stuff that rattles me and it happened to be the same day as the Germanwings crash. Had I known about that at the time, I told Chris he’d probably still be clutching his stomach in Central America.

But the flight back to Atlanta was uneventful.

“Why does coming home make you so cranky?” Chris asked me as my mood had soured quickly upon landing.

The travel beast has been reawakened.

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A second trip to Boston leaves me with lingering questions…

namely, Where was Cliff parking the mail truck when he went to Cheers? Having gone there on this trip, I’m not sure I buy that he was hanging out in a place that is so expensive to park.

At any rate, when I last left you I had gotten food poisoning in D.C. The next morning, Friday, I felt much better. No stomach pain, still off, but better. Once again I had cured myself in a day. And we wouldn’t even have to cancel the next day’s trip to Boston. Oh, oops. Fooled again, but went to Boston anyway. When I get to travel I can power through. Had we been at home, I’d have milked the bejesus out of the situation. But I lived. And lost a couple pounds.

This trip we extended for pleasure. We flew in Saturday, but weren’t needed by the study until Sunday night. We spent Saturday afternoon checking out Boston University since it was only a few blocks from our hotel. There was some sort of regional track meet going on and runners were there from several schools. In fact, some were staying in our hotel. Yeah, you know what’s coming. I officially crossed into “old.” I am no longer the one keeping people awake. I am now the one calling the front desk at 3 a.m. to report “those durn kids that just won’t keep it down.”

Sunday we went to check out Boston Common and the surrounding area. I was disappointed that all the water was drained and ruined my photo op. We came upon the cemetery where Paul Revere is buried. Too bad I’m not teaching anymore. Since for some reason the state of Georgia thinks he warrants six weeks worth of social studies unit (I’m not saying he isn’t history-worthy, just not six weeks worth), I could have used this photo when struggling for material, perhaps made up a story about digging him up at midnight and running through the streets screaming, “The zombies are coming!”

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Most importantly, we went to Cheers so I could have a beer. I went to Boston when I was 16 and couldn’t drink. It felt so wrong to go to Cheers and not have a beer, so I finally fulfilled that ridiculous dream, in spite of my funky stomach.


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When we had free time, we also checked out Chinatown, and we went to dinner at Ann Davison’s house, one of my former co-workers who moved to Boston last summer. This is the view about a block from her house:

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Back to the TSC study, which is the reason why we were up there–Sunday night (at 10:30!) we had to take him for an MRI. Since it’s for the study, it’s not sedated; it’s a sleep MRI. All my MRI knowledge comes from watching House. Remember those scenes? A person is in the tube and the doctors talk to him while he lays inside. Everyone shares deep thoughts, the doctors discover secrets about one another, and House has an unrelated epiphany and runs out. Turns out that television does not portray things very realistically. I wasn’t worried about getting him to sleep. That was a piece of cake. The problem was that since we had to stay in there with him, we were given ear plugs. Paranoid much? 45 minutes of whirring is gonna destroy my hearing? Please. Chris maybe. Took him three days to get his hearing back after I dragged him to Lady Gaga.

It turns out that an MRI doesn’t whir. It’s more of a cringe-inducing series of mechanical groans that reminded me of Ripley trying to blow up the spaceship in Aliens. So he woke up. We stopped, put him back to sleep and started again. He woke up. We stopped, put him back to sleep and started again. He woke up. We stopped, put him back to…well, you get the idea. Eventually we called it quits and decided we would be opting out of this portion of the study. I want to help, but you’ve got to be kidding me. One of the techs even crawled in there with him at one point to calm him.

We also had two days of testing, some of which were the same as what he did on his first trip. It was really great to watch because he has improved so much since last time. Plus, the last time he had two seizures, so he wasn’t to into it. We still haven’t seen a seizure since February 10! He was engaged, cooperative, and the difference was awesome. The only problem he really seemed to be having with the testing was that sometimes he was too busy flirting with the ladies administering it to do it. I looked forward to hearing how the scores would show how much better he was. Finally, the big reveal! And the scores show….regression! Regression? WTF. How is that possible? Here is why. The Mullen Scale is bullshit. Last time we were there, due to the seizures he got sleepy and some had to be completed by parent report. They no longer do that, which is understandable as I see how it could inflate scores. So this time, it had to be done in front of them. Yet, he can do more! How did he regress? Last time he could barely sit, and this time he sat the whole time! Well, the way they score it is that there are a series of things he must do to be scored on. If he doesn’t perform one item, they stop. So when they got to the item where he is supposed to lay on his stomach and reach for an item, he insisted on just rolling over every time because he hates being on his stomach. Therefore, he didn’t get credit for that, nor did he get credit for the following item. SITTING. I don’t know what items came after that, but he didn’t get a chance at those either. So he was rated at a 4-month level in motor skills. He is delayed, but he is NOT at a four-month level. So clearly this test isn’t going to be particularly helpful for our personal purposes. I’m happy to have him in the study and I like the ladies in charge, but the Mullen and I are not friends.

Connor’s physical therapist about flipped when I shared this with her. The Battelle test she uses on him requires three fails in a row in an area before you move on to a different section, not one. So while I had already dismissed the Mullen as a load of crap, her agreement made me feel even better. Some kids have splinter skills. Meaning they may lack a skill that should have come at an earlier age, but they have developed other skills that are more advanced. Connor is such a case. He can sit fully independently, maintain a standing position for at least a minute holding the couch, and as of his most recently PT session, he can also maintain a crawling position for a minute (we just gotta get him moving).

We also took the opportunity to have him seen in the Boston TSC clinic. Dr. Sahin looked him over and we did the Woods lamp test for the first time. Skin involvement is common in TSC, but Connor doesn’t have anything particularly noticeable. He did have some small raised white spots on his legs I suspected were TSC related, as well as a tiny white spot without pigment, but nothing I would have thought much of were it not for the TSC diagnosis. Dr. Sahin confirmed the little white bumps were tiny little shagreen patches, and the lamp revealed some other de-pigmented spots not visible to the naked eye. Nothing that really phased us. Perhaps there is a benefit to the possibility of him inheriting my pasty skin rather than Chris’s ability to tan. His white spots will be less noticeable. He also looked over the MRI that was done right before Connor’s surgery. He said he was too young for it to be a great MRI, but he did point out some tubers, and the SEN’s Connor has were very, very small. SEN’s are the brain growths that have the potential to grow and become SEGAs  which can be very serious, needing surgery or the drug Afinitor, so it was good to hear his are particularly small. His social area of the brain also looked good. Connor will have his annual clinical MRI with them next time we go in August. We should be able to tell a lot more about what areas are affected then.

Chilling in the Boston suite.
Chilling in the Boston suite.

We cut our trip short by a day due to the storm that was supposed to hit. Naturally, that meant the storm ended up being downgraded. You’re welcome, Boston.

Random thought for the day: I think Connor should have been the e-Trade baby.

And then I told Barack, “Look! This is how we’re gonna do this! End of story!”

Back-to-back trips = no blogging for a couple weeks. I’m not one of those travelers that’s motivated enough to lug around a laptop, much less add one more item to the list of things TSA can harass me about. I’m already getting crazy with secret 4-5 oz bottles of*gasp* liquid! On February 26 I caught an early morning flight to DC to join other staff and volunteers of the TS Alliance for training and meetings with representatives and senators. Little did I know that of the four flights I would have over the next couple weeks, this would by far be the best one. It was almost empty and everyone could have their own row. I was traveling with Wendi, and she’s one of those social types that actually engage total strangers in conversation (I’m trying, okay!?). We began talking to a guy that, quite by fluke of another medical issue, had discovered that both his daughters had a health issue related to a faulty gene as well. Theirs is quite different though. I can’t remember what it was called, but basically they are lacking the ability to create an enzyme that creates a protective coating of organs such as the lungs and liver. So although they don’t have any current health issues, the basic drinking and smoking that other people may partake in casually, is a whole different ball game for them. They are at a very high risk for cancer because of this. They are young now, but that’s a lot of pressure as they get older. Those teen and college years are going to be awfully stressful for those parents…

Red velvet, baby!
Red velvet, baby!

We arrived at the Melrose Hotel with plenty of time to spare before training, so we went strolling through Georgetown and stopped for lunch, where I categorically deny having any wine. We also happened by DC Cupcakes of reality show fame. Cute cupcakes, but honestly, I think they were from the day before. Apparently the sisters on the show (which I really don’t watch) only come in when they are filming. Oh, the lies of reality television. We all received matching shirts to wear on the Hill which is great for visibility, but bad for the amount of time I spent obsessing over what to wear before I left. I suffered a closet induced mental breakdown for nothing, but whatever. My Jackie O. dress is still a bit tight where my body mistakenly thinks there is still a baby inside. My ribs would have hurt by the end of the day anyway. We rose early to get through security and where I met my favorite government employee of all time. As we prepared to pass through security at the entrance of Cannon, there was a hysterical number of abandoned coffee cups just inside the door on a ledge. Had I had the time, I would have taken a picture. A female security guard walked over, took one look, and it was, “Oh Hell NO! This isn’t a trashcan! Tell those people outside to use the one out there!” Then she stormed off yelling, “This is bullshit!” I should apply for that job because I used to do that when I worked at Barnes & Noble and Starbucks, and I always got in trouble…

We Georgia volunteers managed to meet with the offices of all the representatives but three, Paul Broun and David Scott, as we never got a response to our requests from either office, and Sanford Bishop, who responded, but had no staff available to meet with us. The morning started off great as our very first meeting was in the office of  supporter Rep. John Lewis who promised IMG_2595continued support. We had other positive meetings, but this was the only straight up yes on the spot. Of course, given that we were there just before the sequester, these meetings were a little different from what they would usually be. What we should have been doing was asking for them to sign the FY2014 Dear Colleague letter to support tuberous sclerosis research. Problem is, as you probably know, Congress never got around to dealing with 2013. So we were trying to get that through, and let them know that eventually there will be a letter for 2014. You see, the House wrote a bill that funded the Tuberous Sclerosis Complex Research Program last summer, but things came to a stop at the Senate and here we are still awaiting a budget for a year that will probably be over before anything gets done. So thanks to the sequester that went down a couple days later ,there are more cuts…to everything. I could rant here about how this kind of performance in the private sector would lead to mass firing, but other people are far better at discussing politics.

With Georgia representative Tom Price.
With Georgia representative Tom Price.
Just after getting a promise of support.
Just after getting a promise of support.

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That evening the Alliance held the Volunteer Awards dinner, my final evening of being introduced to people and pretending not to know who a lot of them were already, as if I haven’t spent the last several months since Connor’s diagnosis stalking everyone online to see how others were faring with TSC. “Oh, hello, nice to meet you!” (In my head: So you’re the mom of so and so, who’s 10 years old, loves soccer, and went as a zombie for Halloween).

Dinner was steak, potatoes and asparagus. Why am I telling you this? It’s significant and will affect the next several days of my life.

Then there were drinks in the lobby, and a trip to a bar across the street.

With Wendi and Reiko, TSC moms and volunteers.
With Wendi and Reiko, TSC moms and volunteers.
With Wendi and Chris Hawkey of the band Rocket Club, emcee for the awards ceremony.
With Wendi and Chris Hawkey of the band Rocket Club, emcee for the awards ceremony.

It was a fun evening, but given the nature of the trip I didn’t get too crazy with the drinks. That turned out to be stupid. I might as well have danced on tables for all the good it did me because when I woke up the next morning, I was NOT well. Wendi had an early morning flight, and should be very grateful of it. I spent about an hour or so being “not well”. And then a miraculous recovery! That’s how I roll. I’m never sick for long. So I spent the next few hours before my flight checking out the monuments.

Just cuz I tried to hop the fence for a photo didn't necessitate a physical assault. Jerks.
Just cuz I tried to hop the fence for a photo didn’t necessitate a physical assault. Jerks.

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Don't I look healthy here?
Don’t I look healthy here?

I found myself feeling particularly tired after a couple hours, which I chalked up to the fact that I hadn’t gotten much sleep the last couple nights, so I headed to the airport early. This turned out to be the only reason I got home that day. I arrived at Reagan to learn that my flight was cancelled and I could either go standby for the next two (full) flights home, or I could take the shuttle to Baltimore and fly from there. Two other early arrivers were in the same boat. I’m quite grateful to one of them, who is a weekly business traveler and had beat me by only a few minutes. Despite the clear skies and the fact that they had another (full) flight departing 45 minutes after ours, AirTran tried to tell him it was weather related. He called BS on that one, and they finally admitted the plane had mechanical issues. So at least for my irritation I got a free shuttle ride and plane ticket (which will probably be so blacked out I can’t use it). While I appreciate the free ticket as compensation given that I still ended up on a flight that departed roughly the same time, I DO  NOT care for them lying. I don’t care if it’s typical of the industry…it’s crap. I also do not care for the fact that I had booked a 2:00 flight, and two weeks earlier I received an e-mail that my flight was cancelled and I was now on the 4:00. I accepted that change–it was fine. But now this, too. And he said, well we sent you an e-mail today. I said, “Yes, you did send me an e-mail today, and it contained my itinerary exactly as it still was. The reference to the cancellation, I thought, was reference to the 2:00.” And I’m not crazy because the business traveler got the same e-mail and didn’t understand the flight was cancelled either. His colleagues that hadn’t arrived yet would later receive e-mails that they could not fly out until the next morning.

At any rate, they paid for a shuttle in which we had to bully the driver into actually taking us. And then when he finally left, he turned around to go back and get someone else despite our protests that we would barely make it as it was. Nonetheless, we did make it. And I thought I was dying the whole way.

Turns out, I wasn’t better after all. But I can’t even claim nausea. It was soooooo much worse. More of a “stomach full of acid eating away at my insides” kind of thing. The TSA lines were thankfully short, just the perfect length in fact, for me to redress, run for the bathroom and retch loudly enough to horrify the entire row of stalls.

Oh my God, it’s Cambodia again. The only time I had ever thrown up on a plane before. Oh please, not again. I can still hear that mean French lady snapping, “Close ze bag! Eet smells!” I rode the wave of post-puke feeling better-ness into feeling hopeful all was well. Until I got on the plane and was seated next to two girls  with attitudes that had seemingly never flown before. I mean, I don’t care if you’ve never flown, but I care that you can’t comprehend that the flight attendant has told you three times to shut off your devices and that you refuse to put your purse under the seat because the floor is dirty. I know an omen when I see one. I was so miserable between the bathroom and my seat, that I actually started to cry. The flight attendant was really sweet and gave me a hug. But then I was terrified of letter her know I was sick because she’d think I’d contaminated her, even though I was certain it was food related. Yeah, the ride home in Chris’s car wasn’t much better. But at least he brought plastic bags.

In defense of the hotel, I have to say I don’t know of anyone else getting sick. I thought the hotel was otherwise fantastic.

The wall in my hotel room.
The wall in my hotel room.

I feel bad if I picked this up elsewhere and I’m blaming them, but timing wise, I just don’t know where else it happened. And they were a little lax with the food I thought, as far as taking a long time to bring things out and letting stuff get cold…so that’s my guess anyway. I would have the pleasure of battling my body all the way to Boston, where I had to fly two days after I returned. But that’s for another entry if you made it this far…if the mention of vomit hasn’t scared you away. Don’t worry. That’s as detailed as it’s getting.

DC footwear on the Metro.
DC footwear on the Metro.