Category Archives: Travel

Travel

Tavel Stories You Don’t Tell Your Mom

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I don’t know what challenges lie ahead for Connor, but I hope that he will get to travel. This is a long post, but I think I almost died a couple times, which my friends will enjoy, even if they don’t care for my wordiness.

My obsession since college has been travel. I credit a few things for leading to this. One is that I’m an Air Force brat and we moved all over until I turned 12, including California and Japan. Another is my college friend Cecile who had dual citizenship because her mother is French. She was always traveling back and forth, and when we’d all converge back on the dorm, she’d dump out a suitcase of French gummy bears and chocolates, and share adventures from the Paris Metro. Meanwhile I tried to tell impressive stories of all the movies I’d seen at my local Regal cinema and frappucinos I’d downed at Starbucks. Most of my early overseas trips involved her. We went to Spain and Costa Rica, and I would later visit her in France, then Germany as she moved about abroad. (Warning: never move somewhere interesting and make one of those empty “come and visit anytime!” offers to me). I haven’t yet made it to Switzerland, where she currently lives.

In Rennes, France with Cecile in November 2002.
In Rennes, France with Cecile in November 2002. I finally got my own Paris metro adventure. Flashed by a man in a trenchcoat!
Spring Break Madrid March 2001 with Sara, Cecile, me and Asma. Home of the famous quote, "SHUT UP! SHUT UP! NOBODY TALK!"
Spring Break Madrid March 2001 with Sara, Cecile, me and Asma. Home of the famous quote, “SHUT UP! SHUT UP! NOBODY TALK!”
At Hofbrauhaus in Munich in May 2005. Cecile is farthest right, next to me.
At Hofbrauhaus in Munich in May 2005. Cecile is farthest right, next to me.

The third was my anxiety, which would landslide into depression at times, and left me with a feeling of being constantly restless. I always felt like I was looking for something, and I figured the best way to find whatever it was, was to hop on a plane. If that thing I was looking for was a fairy tattoo from Thailand, selected solely because I thought the silhouetted wings looked cool, I found it. On a side note, a few years after the dust settled on people thinking I was mental for getting stuck with a needle in Thailand, Hangover 2 got released and when it comes up, people look at me like I’m crazy again.Gathering the courage to get tatted.

tattooThis story I actually did tell my mom. Just not for a couple of months. You see, I’d threatened to get a tattoo all through college, but never followed through. So by the time I graduated, she thought she was safe. Whenever I’d bring it up, she’d mock me and say, “Oh are you? Well if you do, I’ll go get one, too. We can match.” I basically started this same conversation again, as if I didn’t already have one. When she pulled out her usual mocking threat, I said, “Really? You mean it? You’re gonna go get one?”

“Suuuure!” she replied.

I yanked up the shirt to reveal my lower stomach, and silence. Jaw drops. Finally, “Robert! Get in here! Your daughter got a tattoo!”

It was hilarious. It was also nine years ago. She has yet to follow through.

With Mieka at Phuket, Thailand drag show in February 2004.
With Mieka at Phuket, Thailand drag show in Tebruary 2004. Mieka was a teaching friend from Daegu. The first time we went to the tattoo parlor, she went through with it. I chickened out. We went back the next day.

The Thailand trip came on the heels of a six-month stint teaching English in Daegu, South Korea. South Korea is a very dangerous place to live, in that it feels so safe that your guard will be significantly lowered when you leave. As far as safety is concerned, I have never felt so free as I did there. Perhaps my inability to read and follow the news exaggerated that feeling, but a random murder in Seoul made such a splash that it actually seemed like murder was a big deal there, as if it didn’t happen every day. And so I felt free to wander down dark alleys I wouldn’t have otherwise. The biggest danger I faced there was an angry Ajumma (older, married woman) openly disapproving of my wardrobe. Man, they hated that red, strapless dress of mine. I couldn’t understand what they were shrieking, but nothing got the octaves up like that dress.I only remember being scared there once. Most of the time I was there I live in a dorm near downtown, but for a brief period I stayed in an apartment about 15 minutes out, near Kyungpook University, with a Canadian roommate. This was the setting of Travel Story You Don’t Tell Your Mom #1. In the middle of the night came a wild  knocking on the door. I came out of my bedroom just in time to see my roommate wrestling a Korean man back out of the door and slamming it shut. He continued to bang and yell while we looked at each other confused. At this point we realized we had no idea what the Korean 911 was. Instead we attempted to start calling the school headquarters, as it was approaching 6 am. One of the managers answered. But since he spoke no English, he just kept hanging up on us. Finally we were able to get one of the owner’s sons on the phone. He contacted the police for us. The banging had gone on for over an hour, but in the meantime, he had taken a fall back down the stairs and was passed out on the landing. The only way for us to get out was to step over him, which wasn’t going to happen. Eventually he awoke and was back to trying to gain entry. During this whole time, not one neighbor did anything. Finally the cops arrived and we opened the door, a thick Canadian girl armed with a bat (where the hell did that come from?) and me with a heavy, metal statue of the Hindu god Shiva. It turned out the man was so incredibly intoxicated, that even having two white girls open the door was not sufficient to convince him that he had the wrong apartment. He lived in the next building. I will say, on his behalf, that those apartment buildings do look like they rolled off a conveyor belt built by Paul Bunyan. The cops thought the whole thing was hilarious, and laughed as they dragged him away, still screaming, I presume, that it was his apartment.Beyond the insult of the cops finding our fear hilarious, the boss’s son never did check on us to see if we were okay. One of many reasons I had no guilt about breaking my contract halfway through. But my ridiculous job there is another entry to come.

Cambodia Angkor WatThe unsettled feeling had arisen once again, so I booked two months in Sevilla, Spain of language courses, but decided to go through Thailand (where I would obtain my tattoo) and Cambodia on my way out of Korea. Why Cambodia? Cambodia had garnered some recent attention due to Angelina Jolie’s adoption of baby Maddox. While in Korea, I took to reading about the atrocities of the Khmer Rouge when they took over from 1975-79 and destroyed the country, coating it in landmines and murdering much of the population. I selected it because in my mind, I would be wandering through jungles, maneuvering around land-mined areas to explore the ruins of Angkor. It turned out that the only thing I had to maneuver around were Australian backpackers. It was an early lesson in that if Lonely Planet has been there, so has everyone else. Land mines were well cleared and danger areas off limits. Bummer. But as I mentioned, Korea destroyed my sense of danger which is how Travel Story You Don’t Tell Your Mom #2 happened. I went alone, but had met another American on the flight into Cambodia and we were traveling together now. On our way into one of the temples, we encountered a couple of young local boys who wanted to give us a tour so they could practice their skills and eventually get jobs. Tourism is a lifeblood industry in this poverty stricken country, so we said no problem. Of course, we knew they would want a couple bucks at the end. Not an issue. So the four of us wandered around the temple and they described the temple friezes and what they meant. The area was drowning in tourists, so we had no reason to be concerned. But there was one part that was set apart from the rest, and before we realized it, we were headed for it via a woody path. Other tourists were fewer and farther between. I hadn’t realized that Cyrina and her tour guide had dropped back a bit, and suddenly my guide stopped. He informed me that he had to go to class and wanted money. His demeanor went from friendly and jovial to aggressive. I said, sure, no problem and started to reach for my Thai baht (even the Cambodians don’t want their own currency). Then he demanded 2,000 baht specifically. I just looked at him dumbfounded. That was over 50 bucks. Was he on crack? “You mean 50 baht? Right?”

“No! I have pay for school! Give me 2,000!”

I glanced back at Cyrina and could see she was having a similar conversation with her guide. I wasn’t scared of him. I couldn’t process more than that he had suddenly lost his

With Cyrina in Cambodia.
With Cyrina in Cambodia.

mind thinking I was going to give him that much money just because he demanded it. He was definitely getting creepier by the moment. And then I heard a magical Australian, “Hello, there!” It was an older gentleman we met in our hotel. “Oh, hello!” I exaggerated and ran to his side and we walked back to the main temple, grabbing Cyrina on the way. The guys just glared after us. Back at the main temple, another backpacker we had met previously expressed concern because she had seen us with the guys and she had heard it was a ploy to get tourists away from the crowd and rob them. I never even felt fear during this entire encounter as Korea had slowed my danger processing so much that I didn’t register what truly could have happened until it was over. I’m not normally this stupid…I even keep my keys between my fingers when I’m alone in dark parking lots, ready to gouge out the eyes of an attacker. Damn Korea’s low crime rate. It almost got me killed.

Coimbra, Portugal was location of my scariest encounter, Story #3, which was ironic because I had initially planned to travel to Honduras that summer. But my mother had to go and read the state department’s travel advisories, and man, you never saw someone so nervous about a few machete murders. Look, it’s a small country. You do what you gotta do to get a good spot on the beach. Since my mother took it so well the previous summer when I told her I would be traveling alone for five weeks through Thailand (again), Laos and Vietnam, I thought I’d cut her a break and alter my plans.I’m not sure when the Portugese encounter started. I do know when I first saw him. I had crossed a bridge over the river to see a monastery (I think…that’s kind of cloudy now). There was this dirty looking guy carrying only a camera bag. I’d been out of Korea for a few years now, so suspicious mode was back. He seemed weird and I caught him looking at me, but he could have just been some dirty backpacker. The camera bag mellowed me a bit, but it wouldn’t be long before I started to think there were scalpels rather than cameras inside. I started to walk back across the bridge, and knew he was behind me. He came closer and closer, so I stopped next to some tourists and let him pass. He breathed heavily behind me as he did so. I gave him a reasonable head start and continued. Then he stopped, as if looking at the water, but I could see he was checking my progress. So I hurried past him and made a right through a crowded park at the end of the bridge. I found a place to sit and relax and let Mr. Weirdo go about his day. Within a few minutes, he took a seat just a few yards from me. At this point, the prickles of annoyance turned to fear. There was no doubt about what he was doing now. I made my way through people to a riverside pizza place. My brilliant plan was to have dinner as he would surely lose interest in that amount time. My mistake was that the restaurant was almost entirely windows. I could see him pacing from one side to the other, watching me eat. Now I was entering panic mode. It was Sunday. Most things were closed. I was currently in the busy tourist area, but I would have to pass through some quiet streets to get back to my hotel. I desperately tried to communicate my problem to the waiter in my crappy Spanish, hoping it would be similar enough to the Portugese I needed. He seemed to get the basic idea of what I was telling him and pointed out a nearby police substation. I waited until Captain Creeper circled around the other side and made a run for the busy street. Somehow, magically the traffic cleared for me and I made it, the hole filling in quickly behind me. He spotted me too late. I continued to run and he couldn’t get across. I made the split second decision to head for my hotel because at this point there was no way he could catch up. Even for the few months I did 5ks I could never run like that again. I reached the hotel and locked myself into my room, and left town the next day. I will always wonder what his intentions were, especially considering he did this with so many people present. I also wonder if I should have gone to the police anyway. He probably would have melted into the crowd, but maybe, just maybe, they would have picked him up and discovered he was wanted for rape or murder or something.

In spite of these stories, I generally feel very safe when I travel. I generally try to follow the rule of not looking too much like a tourist. No fanny packs…both for safety and the massive offense to fashion. I quit the whole travel wallet strapped to the body thing years ago. I hate those and prefer to carry no more than I can afford to lose, but if you’re going to use them, carry just enough for basic purchases in a regular purse or wallet. It kind of defeats the purpose when you have to make a big show of practically undressing yourself at the cash register. Be cautious at ATMS, but it is not necessary to have your wife hold a jacket over you to shield the screen from prying eyes. That makes ME want to rob you out of spite, and probably signals thieves that you have a good amount of money in there to be that cautious. You also shouldn’t walk around with guide books and maps in your hand, but I freely admit to breaking that rule as my directional dyslexia won’t allow me to process and retain directions beyond a block.

Oh, and upon further review of these stories, Connor is not allowed to travel. He’s not even allowed to leave the house. Ever.

Sorry, Mom.

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Boston TSC Study, Ordinary Life, Parenting, Travel, Tuberous Sclerosis

Do you like apples? Connor went to Boston! How do you like them apples!?

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Connor's first airplane ride.
Connor’s first airplane ride.

We flew to Boston so Connor could take part in a TSC study through Boston Children’s Hospital and Harvard. It helps us by potentially identifying areas in which he might be showing delays so we can intervene, and in exchange we are helping the study identify early markers of how TSC might progress. Since there is such a wide variation in how TSC presents, from people leading competely normal lives to round the clock care and everything in between, the earlier doctors can identify who might go down certain paths, the better.

I was worried about flying with a baby. Ever since 9/11, I have had a decidedly contentious relationship with TSA. Apparently I resemble p. 33 of The Big Book of Terrorists. It’s gotten better since right after 9/11 when I was one of the randomly chosen few for the arbitrary secondary search at the gate (every. single. time), I guess because I so perfectly fulfilled the role of “white girl” in a politically correct collection of humans to pat down. So I’d be chilling with Asian Dad, Black Grandmother, Hispanic Mom, and various other people wearing t-shirts that said “Just Do It: Blow up the Plane.” TSA relaxed with me after a few years and mostly only chose to arbitrarily search my bag even though I had cleared security, finally prompting me to remove my bomb-shaped luggage tag and collection of Middle East flag patches meticulously sewn all over.

Who knew a baby would make it easier?! First, we got to bypass the security line in Atlanta. When we returned our Hertz rental car at Boston Logan, they drove us to the terminal instead of making us catch the bus. Then I got to bypass the full body scanner since I was holding him (I’ve successfully avoided these ever since implementation! Score! knock on wood). We got to board early.  Rather than making us choose peanuts, pretzels, or cookies, the flight attendant gave us two of everything. And finally, getting to enjoy that intense look of fear in passengers’ eyes when they see you. Pure awesomeness.

It was Connor’s first flight, and generally, he’s not a fussy baby, so we weren’t too worried. Naturally, as soon as we sat down on the plane, he whined and shrieked, until we got him to sleep. From there it was smooth sailing. On the flight back, we had a standard rough Delta landing which he loved. As we bounced and jerked, he laughed and laughed.

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We arrived Sunday night (oh no, I’m sorry. It was only 4:30, it just happened to look like night already) and went to pick up our rental car from Hertz. We were upgraded to a Hyundai Elantra. Don’t get me wrong, it’s a cute sporty little car, but the key word is still little. Were we getting a moped before? No complaints though. We had a great experience with them (see above about how they drive people with kids to the terminal). I’d detail our adventures of trying to navigate the big dig and poorly lit Boston roads with tiny street signs to the Holiday Inn, but I try to keep the four letter words to a minimum in the blog.

We finally found it though, only to discover they didn’t have our reservation. Apparently, the hotel made the reservation for the day they received the request from the study, not the dates we would be there. So we were a couple months late for our reservation. Fortunately they had plenty of rooms, with windows into the interior lobby, not to the outside. Deep breath. I will not freak out that I’m going to suffocate and die in here. The study ladies were unthrilled to hear that this occurred (seemingly not the first time) and we are being reimbursed for this as well. So we enjoyed a “not bad” hotel dinner, followed by some extremely questionable eggs benedict in the morning, and to the study we went.

What are these tiny pillows on a king bed?!!
What are these tiny pillows on a king bed?!!

Unfortunately Connor had one of his eye rolling episodes during breakfast which meant he was gonna be a little bit on the tired side. They started with the EEG net on his head, a very expensive and newer version that delightfully didn’t require the glue of the standard EEG. The computer tracked his eyes while a screen flashed pictures of shapes, me and a random woman.

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Then he sat on my lap at a table and they watched how he interacted with certain toys. He was given particular tasks to complete with objects, but at that point he had more eye rolls and it was sleep time. We had to cut the cognitive test short and do it based on parent report. The final part was an examination by the neurologist, who noted his slightly low tone, but otherwise thought he looked good. She was impressed that despite his surgery on the right frontal lobe, he showed no weakness on either side, which can occur.

All this took place in just under 2.5 hours and we had several hours to fill before catching our flight home. We decided to tour the campuses of our backup schools, Harvard and MIT. As we both got into our first choices, Chris into Marquette, and myself into the University of Georgia, fortunately neither of us were forced to go to these second rate institutions. Harvard does have a beautiful campus, although that does little to negate their horrendous academic reputation.

This is a Harvard snowman. I rest my case.
This is a Harvard snowman. I rest my case.

We received the assessment results within a couple days. Areas of concern: visual reception (have to look into this more, I think it means he wasn’t paying much attention to the screen with flashing pics-we’re hoping a factor in this was that he was quite tired and not really wanting to keep his head up to look at the screen), expressive language (already looking into speech therapy, since he can certainly be noisy, but isn’t yet making consonant sounds), and gross motor (already getting PT). Not really major surprises. Receptive language was a slighter delay, meaning while he seems to recognize some words, he doesn’t consistently respond to them. I definitely notice that when he’s in a good mood, he’s pretty responsive. If he’s tired or disinterested, he’s pretty good at ignoring me. Interestingly, his fine motor skills were right on target, something I already thought to be the case.

His 12 month follow up looks like it will be the last week of March. We’re extending this trip into a little family vacay. I look forward to building my positive relationship further with TSA. If they stop feeling me up permanently, maybe we can even be friends…

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Ordinary Life, Parenting, Travel, Tuberous Sclerosis

You want answers? I WANT THE TRUTH! Well, good luck with that.

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December has been a tough month for blogging. I feel like I’ve been going, going, going. That’s even more than I usually feel like I’m going, going, going with a 9-month-old. It started with stressing over trying to get that confounded EEG appointment, then going down to Florida to see Chris’s parents, coming home and checking into the hospital the next day for the EEG, getting discharged in time to start all the family festivities with those that came to town, then Christmas. I was so exhausted I had to renege on plans to hang with some friends at a bar downtown. This after weeks of thinking, “man, I want to go out.” Not that I don’t go out, but I wanted to go out more like I went out pre-baby.

It didn’t help that we went from warm, sunny Florida where it was still summer, and we floated around in the backyard pool with beers in our hand, back to chilly Atlanta, where we immediately had to check in for the stay from hell at Scottish Rite.

Pics from Florida:

A snowman

A pool

A pier

A kiss

A flamingo Santa

A elf

A duck

A crane

A chris and me

So we got all nice and relaxed in time to check in for Connor’s EEG where we could promptly become stressed and agitated. We had no issues with our neurologist. He kept us informed and even let us out a day early as we’d caught several “episodes.” This is our second less than satisfactory in-patient experience. First time was after his brain surgery. The surgery part went great. We love our surgeon and we had a good experience with the surgery department. There were a few issues once we moved to his room though, the primary anger-inducing one being that the day after surgery when he started swelling, he was clearly in pain. His heart monitor kept going off because of it, but nobody ever came to check on him (or for any other alarm for that matter). Don’t get me wrong. I totally understand that every alarm is not an emergency, but as parents, when things go off repeatedly for an extended period of time, we might benefit from a little explanation of what warrants concern. Not to mention, it’s already stressful and then you’re sitting in a room with all this machinery beeping at you obnoxiously. It got to the point where in the middle of the night I just started silencing them myself (after it had been clearly established which ones were clearly unworthy of response). At any rate, we finally asked when his next round of pain meds would be. I stupidly assumed (as I am new to the medical world-my first hospital stay being Connor’s birth) that he was getting them because his skull had been drilled into and his brain resected. “Would you like him to receive pain meds?” was the response. “Ummm…yes. He’s in pain and crying.” The nurse responded, “Yes. I saw his heart rate kept going up on the monitor out there.”

Well, alrighty then. But this was before I read an article that advised to never have surgery on Fridays because weekends aren’t exactly the best staffed, so I chalked a lot of it up to that. Also, before I continue, I want to be clear that it’s not my intention to bash nurses. We’ve had great ones that were very proactive in pushing doctors that were taking their sweet time taking care of business, especially in the NICU, but it’s like any profession. Some are great, some are good, some suck. Because then there was the evening Aunt Donna watched him while we went to dinner and he pulled his IV out, spurting blood everywhere. The boy loves to yank his wires. She was left applying pressure to the bleeding spot until the nurse could return with a bandaid. Good thing it finally quit bleeding because nobody ever came back. We also couldn’t get his med schedule reestablished while we were there becaue every time shift changed, nobody had passed on that he takes them at 8 and 8, so they were coming at all crazy, inconsistent times.

So this time we were there mid-week. I do think he got more attention this time, which was funny because it was just a testing situation. But the meds were consistently late messing up his sleep schedule, sometimes more than an hour. And the most frustrating part is that I don’t want to yell at the wrong person. I don’t want to go off on the nurse, because if they are understaffed, that is not her fault. But with a lot of the stuff that doesn’t go smoothly, you just don’t know where the breakdown happened. I’m particularly uncomfortable in this area because I taught for seven years and I know what it is to have parents let you have it over things you have no control over.

But even midweek, we weren’t issue free. There was the EEG removal and shutdown I mentioned in my last entry. Then came the big one. The second night we were there I noticed Connor’s eye was red and irritated. I thought perhaps that in his rubbing and messing with his electrodes he may have gotten some glue in his eye, so I asked the nurse if there was something that could be done to soothe it. She was uncertain whether it was irritation or an infection so she wanted to check in with a doctor first. Thirteen hours later he finally got a saline flush. (And I had brought up the eye problem twice more). By then it had progressed to goopy, not opening, and him screaming like a bat out of hell when we pried it open. Sixteen hours later after more followups from me, a pediatrician checked him out. He’s still screaming and refusing to open his eyes. Seventeen hours later he got ointment and a swab to test for pinkeye. The swab would later come back negative, affirming that perhaps if he hadn’t had to wait 13 hours for an okay on a simple saline flush, that maybe he didn’t have to suffer the next few days, even after he came home, unable to see us or his toys. Here I thought being in a hospital was the optimal place to be if something like this happened. Who knew we’d have been better off at home and taking him for an emergency pediatrician appointment? Sixteen hours as a patient in a hospital. What happens if you contract MRSA? Does a limb have to fall off?

Headed home after his two-day EEG. Too bad he can't open his eyes to see his awesome hair.
Headed home after his two-day EEG. Too bad he can’t open his eyes to see his awesome hair.

I’ll end my diatribe there. But I will say that I’m the calm(er) one, always telling Chris not to burn bridges. God help any hospital that houses me should I ever lapse into a coma.

There was one thing that led me to feel grateful after this stressful stay. After we were home, a friend posted a link on Facebook  about the passing of a friend’s premie baby. I didn’t know the parents, but as I was downstairs bitching about Connor’s eye, there were parents above us in a NICU I know all too well losing their child after 77 days of life. Things can always be worse. I can’t even imagine.

As I mentioned, Connor’s eye-rolling “episodes” as I now call them did not show up on EEG as seizure activity. After another day of comparing video of his eye-rolling with simultaneous EEG activity, one correlation our neuro could find was that when Connor is awake, electrical activity from his left occipital lobe tuber spreads over the left side of the brain. When he’s sleeping it spreads all over the brain. However, when he has the eye-rolling episodes, the activity resembles what it does when he’s sleeping even though he’s awake. But it doesn’t build up into a seizure. It’s just a little quick burst of activity from the tuber (which if I understand correctly isn’t uncommon in TSC) that dies away before it builds into anything. So, for the neuro, it still doesn’t explain why his eyes move like that when he has these clusters. He is still looking into it because he’s never seen this before. I’m glad now that he didn’t okay the ambulatory EEG because the test would have been a wash without video.

Anyway, December has been so crazy I never got to do my post about decorating for Christmas, which I love. So here are some shots of our house:

B outside

B Santa

B soldiers

B train B tree

B room

And my new pride and joy: a Lego Christmas village! Put together, of course, by Chris. I don’t have the patience. Chris’s initial plan was to assemble and disassemble on an annual basis since he enjoys Legos. Several hours of construction later, that plan was out the window. I’ll explore the fake snow option next year, but after hours of work, Chris was opposed to anything that required the manhandling and moving of the parts. Very, very opposed. So Merry Christmas. I didn’t break the village!

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village 5

village 4

village 2

village 1

Shots of Connor’s first Christmas in the next blog entry!

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Travel, Tuberous Sclerosis

Connor’s featured on Toemail!

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I’ve been following a blog called Toemail, which will surprise many of my friends because I used to have a hideous aversion to feet. Baby feet are another story though. Those are awesome. And my fear of feet in general is fading with time… just don’t get them too close to me. I really enjoy this blog though because people submit pictures from all around the world. Check out Connor’s post here. And then check out the rest of their site. It’s pretty cool!

On another good note, with some help of our medical assistant from the neurologist’s office, we finally got Connor’s EEG scheduled for December 18. Mommy’s blood pressure can go back to normal now.

Ordinary Life, Parenting, Things to Do Around Atlanta, Travel, Tuberous Sclerosis

Magic Mike, wi fi, iPhones and other such things we can’t live without…

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People Magazine’s Sexiest Man Alive edition arrived the other day. Channing Tatum. Thoughts, ladies? I have to say I wasn’t really a fan until Magic Mike. That is embarrassing for me to admit because Magic Mike is one of the dumbest movies of 2012. Plus, and I hesitate to say this as a mom, but it wasn’t gratuitous enough. I mean it’s a movie about strippers clearly targeted at women wanting a girl’s night out, the majority of which, I assume, consumed alcohol beforehand. That’s what everyone did right? We did. And we went to a matinee. Yet, I think we can all agree that too many chances were lost with the other strippers. Joe Manganiello and the dude from White Collar were wasted opportunites. Just saying. I haven’t read the article yet. I don’t want him to ruin it by talking.

Chris, Connor and I spent the weekend with my parents at a cabin in Fort Mountain State Park in North Georgia. My parents do the whole cabin thing a little differently than Chris and I do when we go to the mountains with friends. Our cabins typically come equipped with pool tables or air hockey, a jacuzzi, satellite TV and more bear themed paraphernalia than you can stuff in an 18-wheeler. You know, just enough away from civilization without being too Deliverance about it. My parents like to roll rustic. No air hockey, a few basic channels and GASP no wifi or even much of a cell network period. I suppose I can’t deny it anymore. I’m a hardcore addict to my phone. I’m not like those freaks on MTV that sleep with their phone or anything (that’s ridiculous, clearly the bedside table is close enough) but take away my wi fi and 3G (yup I said 3G, lame Verizon) and you’ll find me desperately pressed against a cold window trying to simultaneously update my Facebook and Instagram feeds. We went into the town of Blue Ridge for the afternoon and I was like a crack fiend in a police evidence storage unit except instead of drugs I was getting high off access to technology. I’ve always been a fan of instant gratification, but the smart phone has ruined me. If I take a picture that I want to post, it’s not sufficient to post it tomorrow….I have to post it NOW! Some of you might be thinking, “Well that’s strange. She NEVER answers her phone when I CALL.” Yes, that’s right. I’m part of the new school of anti-talking phone addicts. I don’t want to TALK to you. But if you wanna text or Facebook me, I’m down. I’ve never been a phone person, even as a teenager. I remember how badly I wanted my own phone as a kid. I loved that phone, too. I was 11, and it was one of those phones with the giant buttons. I used it to call the theater for movie times. I wasn’t planning to go to the movies, I just wanted to dial the big buttons without actually talking to anyone. I’m pretty sure once people read this they won’t be trying to call me anymore anyway.

Maverick in Blue Ridge. Goose already bailed.

Something else I noticed at the cabin was that even though Connor is about to be 8 months old, I still can’t get used to my parents being Grandma and Grandpa. I still catch myself referring to them as Mom and Dad on Connor’s behalf, as if he’s my brother and not my son. “Oh, look what Da- I mean, Grandpa is doing!” I figure I’ll be able to comprehend that my parents are  grandparents just as soon as I start comprehending that I’m responsible for the well-being of a small human.

Connor’s eye rolling incidents continue. We’re pretty sick of them at this point, especially since we don’t have confirmation of what they are. I’m thinking about calling the neurologist this week and requesting a take home 24 hour EEG, something that the EEG tech mentioned was a possibility last time since Connor declines to have these episodes when electrodes are on his head. Even though he is doing well in spite of them, I’m tired of wondering and obsessing. I look at the clock every so often and think things like, “It’s 2:16. Can we make it to the end of the day without any?” Then I get over eager to get him to sleep at bedtime so I can officially end the count of episodes for the day. Since these started he was having 0-2 a day. Very rarely did he have 0, sometimes 2, and usually 1. Just the last couple weeks we started seeing more 0 days, which is good, but the 2 days increased and suddenly he had three random days with three. WTF? Yet, many of the events are shorter, so I guess it’s sort of a tradeoff? It’s so irritating.

Anyway, I want to share some links to some other TSC blogs I follow. I encourage you to check them out as long as reading mine remains your priority. 🙂 haha. Every individual’s experience with TSC is different, so you can read and share your experiences with others in the TSC community and have stories that are nothing alike. I interact with adults who have it and are doing very well, living normal lives (not to diminish the medical issues they do have to contend with. It’s a disease you must always remain watchful of), but there are those that need a lot of care because they are so severely afflicted. And it’s always in the back of my mind that though we assume Connor is a spontaneous mutation, as are 2/3 of TSC cases, without genetic testing, I cannot say with certainty that I don’t have it myself.

My friend Wendi just started her blog. She was the first person in the TSC community we met and talked to. When we found out about Connor’s TSC and that he was facing brain surgery, we came across her son Hudson’s experience on a couple websites and immediately contacted her with questions. Check it out here.

Another one is my friend Tina. I’ve actually never met Tina. She lives in California and we met online through our wordpress blogs, then FB. Check her out here.

One last blog for now. I do not know this family, but they appear in some of the TSC literature, so Facebook stalker that I am, I located Laurisa’s blog. Find it here.

And if you’re not sick of clicking links yet, please check out this video that discusses some of the reasons that TSC research can benefit everyone, not just those with TSC. Click here.

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Ordinary Life, Travel, Weight loss

This white powder ain’t for skiing.

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I’m going to out myself. The other day I received a package from UPS. There was a powder inside. White powder. I have a problem.

But let us go back in time, to when the problem began. I was a relatively healthy kid, no stick, but not fat by any means. In high school, I officially spent some time as “skinny.” As in skinny enough to get some attention for being “skinny.” It’s like a drug. The attention makes you high. And I got that way because two of my friends threw themselves equally into exercising obsessively along with me. In retrospect, I think I may have qualified as an exercise bulimic because every time I ate something I felt the compulsion to jump, dance, or run around to burn it off immediately. It was a pretty impressive weight loss considering one of the girls in the trio was something of a compulsive liar, and apparently a saboteur as I discovered sometime later in a shop on Buford Highway. My beloved, and as she claimed, low fat, low cal Indian cookies she always had on hand for me at her house were quite the opposite. But how was I to know? It’s not like I could read the label.

But eventually I got bored, hungry and spent more time with other friends, so the exercising waned, I put on a little weight, but not too much and all was fine for my senior year. Then I went to college. Forget the image of the starving student surviving on ramen. I had the meal plan! All you can eat, all day long. And here I was, with more freedom, booze and food than I knew what to do with. (disclaimer: The University of Georgia did not provide booze in the dining halls. Mean students who peer pressured me into drinking 😛 did) I love the pictures we snapped of ourselves that first semester at 11:00 at night as we got ready to hit downtown Athens, mostly because those are the only ones I look good in. Because then I gained the freshman 15. Three times.

After graduation, I used my journalism degree to obtain a high ranking position at Barnes & Noble (see cashier, bookseller). The inability to find a full time job left me with lots of time to exercise again and so I began shedding my college souvenir weight. After about a year of being shocked at how stupid customers in a book store could be (I stupidly assumed we’d get a better clientele than Wal-Mart), I decided I was tired of hearing people whine about how we charged tax on newspapers and that this latte surely wasn’t decaf, so I took a teaching job in Daegu, Korea. I worked out here:

No, seriously. I walked into that building and paid them money with no expectation of being murdered. The movie Hostel hadn’t been released yet. I was innocent to the ways of the world. So despite a lifestyle of being surrounded by countless peers in their 20s who had expendable income to burn on food and drink. And drink. And drink. I did manage to keep from porking up.

I left Korea to face reality…oh, wait. No I didn’t. I went to Spain for two months and took Spanish immersion classes, as I had many Korean won to spend.  This is where I started to mildly derail again. Fortunately, being in Europe entails lots of walking, which helped me somewhat fight the effects of Spanish hot chocolate. If you aren’t familiar, hot chocolate there has a consistency of cake batter. It’s thick and amazing. I want to get all Augustus Gloop around it and shove myself into the mug. I’m pretty sure I started to put a couple pounds on again.

The real trouble started when I went home. I started my master’s degree in education and also worked at Starbucks. We’ve already established that higher education makes me fat. Now I also had (unofficial) access to all the mochas I could ever want. I swear I had put on 20 pounds within three months of starting work there. And for those of you who order sugar-free syrup and fat-free milk but keep the whipped cream, well we laugh at you. Starbucks isn’t using Reddi-whip. The whipped cream alone will have Jerry Springer knocking your wall down before you know it. FYI: It’s made with heavy cream.

And so, by the time I began my student teaching I had once again gained a significant amount of weight. As I started my career, I once again began to hit the gym regularly and shed pounds. And I did great. I maintained. I ate well. I discovered that truly the best way to take weight off and keep it off is to make it about eating well and nutrition, not just weight loss. It was the best I ever felt as far as my weight goes. But then I met my now husband, and we ladies know how that often goes. Why go to the gym when you can go out to dinner. And so weight crept on again. This time I decided to reign it in before it got to hideously out of control, and began to lose weight. After some time I decided what better way to lose weight than getting pregnant? Sigh. I love my baby, but not this tummy. And that bring us to the present. I’m nearly 8 months from having Connor and I’ve been at a plateau with the leftover baby weight for about five of those months. I can squeeze into one pair of jeans, and I own about eight. I’m sick of wearing the same flowy shirts over and over. Even though I don’t believe in it, even though I’ve said there is no point in losing weight in a manner you can’t maintain, even though we bought an elliptical and stationary bike, I’m so flipping frustrated that I’ve decided to try the white powder.

Meal replacement shakes. Be afraid. Be very afraid. I like the art of chewing. This could get ugly.

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Parenting, Travel, Tuberous Sclerosis

Boston or bust!

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I just went to pick up Connor, and as I hoisted this 7.5 month old that wears 12-18 month clothing, it struck me. As his body weight succumbed to gravity and my hands pushed up into his armpits, I realized how much more tightly his arms were clamped down over my hands, that his shoulders and arms weren’t doing that slight slide upward that used to force me to clamp down a little tighter. His doctors and physical therapist have mentioned his improvement in tone, but today’s realization makes me realize how far he has come with surgery. His tone was not so low that he was diagnosed with floppy baby syndrome or anything, but neurological issues can cause somewhat low tone which means it takes him a little longer to master some physical activities. He has to build more strength first when doing something new. While his degree of low tone wasn’t expected to be  problematic long term, I love to see these little improvements.

He’s also loving his feet these days!

Naked baby loves his toes!

I also spoke with the people doing the study in Boston and it looks like we will be traveling in early January for our first visit. We ended up not qualifying for the initial study we thought we would take part in because his brain surgery disqualified him. Instead they referred us to another TSC study that didn’t have that as a disqualifier, but has similar goals. We have the option to extend our stay in Boston and have a  little mini-vacay as long as we pay for any additional hotel nights. But something tells me we may bypass that in the frigid month of January and wait until our next trip at 12 months old.

Connor will go to Boston at

9 months

12 months

18 months

24 months

36 months

I have a hard time not getting violent with TSA when I fly alone. This oughtta be good with a baby. If I end up in prison, tell Connor I love him.