I was just 24 weeks pregnant when the words “tuberous sclerosis complex” were muttered to my husband and me, and pamphlets about this disorder were thrust into our hands by the doctor. They found cardiac rhabdomyomas on my otherwise healthy baby boy in utero. From that point on, I had biweekly monitoring by multiple doctors, scanning every bit of our child to detect any other marker of TSC and they did not find anything, even after a fetal MRI.
Our little boy, Owen, made his appearance on March 16 at exactly 40 weeks. Everything about labor and delivery couldn’t have been more perfect and our son scored wonderfully on Apgar and hearing. After four days and some NICU monitoring, we were able to take our little man home to enjoy. We didn’t realize how soon that would change.
Three and a half weeks later, I began noticing a twitching of Owen’s right arm. I had done my research on TSC and the different types of seizures I should be on the watch for. Intuition was telling me these WERE seizures. My husband was more optimistic, but the twitching was increasing, so off to the pediatrician we went. Following that appointment, we were immediately sent to be admitted at the hospital after our pediatrician got to witness what I had been seeing all along.
Multiple tests including a lumbar puncture and bloodwork came back normal. It was not until a VEEG was done that we got our confirmation that these were indeed seizures. A brain MRI the next day then officially diagnosed our son with TSC after finding multiple tumors in our son’s brain. You know when four doctors, a chaplain and social worker walk into your hospital room at the same time, that the news can’t be good. Owen was started on his first anti-epileptic medication that same day. We were thrilled when it worked from the first dose and were excited to go home, thinking this was the end of seizures for Owen. That medication worked for three days.
Multiple seizure types, six medications, one diet and one brain surgery later…
Owen is now 13 months old and experiencing freedom from seizures for the first time since he was a newborn. How has someone who just celebrated their first birthday been through so much already? How does he continue to smile and play despite seizures wreaking havoc on his development for 11 months? Because this kid has strength and spirit that only God could bestow.
We don’t know what the future holds for Owen, but we don’t care. He has taught us that no matter the battle, the strength to continue on will always be there for him, and for us that is enough. You are not winning, TSC.
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.
We 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.
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.
Chris’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.
Next 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 interested 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?
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.
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 —
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.
Chris and I woke the next morning, still slightly rattled from the robbery, but still excited for the day’s activities. After I massaged the bruise developing on my butt from landing in the street, we headed to the dining room for a Guatemalan breakfast, which was included with our room.
My favorite thing, besides the coffee of course, was the chuchito — corn dough, meat and tomato salsa wrapped in a corn husk.
Then we headed over to the other hotel to meet Gaby and David, friends from back home that I met through Lili. We were booked for the coffee tour and zip lining through Finca Filadelfia. An adapted unimog truck picked everyone up at 10 and we rattled over the cobblestone streets of Antigua, frequently seeming like we would scrape other cars, but somehow squeezing through.
The zip line was first. This was my third time zip lining (previously in Costa Rica and North Georgia), but the first time I didn’t have to do my own braking as I approached the platform, which made it easier to focus on the views.
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We grabbed some lunch on the property afterward while waiting for the coffee tour to start. I was quite surprised by the coffee tour. I love coffee, but I can’t say I expected the tour to be as interesting as it was. I’ve been on a few winery tours to learn about my other beloved beverage, but tend to lose interest after gazing at a couple of oak barrels — take me to the tasting! But coffee was actually much more interesting to me. The guide took us out on the property and we saw the process from start to finish. I was surprised to learn that while most countries can just grow the Arabica coffee plant, Guatemalan soil isn’t well suited. They graft the more resilient roots of a bitter robusta coffee plant to the tastier Arabica tops.
We wandered through the plants and were allowed to pick some coffee beans right off the branches. There is a method to doing this without messing up the bean. Yes, I messed all mine up. We eventually worked our way through the drying, roasting and packaging, including the opportunity to wear hairnets. I suggested Chris wear two as a safety precaution.
Naturally this all ended with the sampling of an incredible cup of coffee. I took a couple of smooth enjoyable sips, but couldn’t resist dropping some sugar in when nobody was looking. I change for no one.
Thousands and thousand of coffee beans drying in the sun — such beauty.
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I snapped a couple photos of some local girls collecting and shelling beans.
We returned to town as the wedding rehearsal finished, grabbing a drink in the hotel lobby. Did I manage to talk Chris into dinner out? That would be a hell no. But we did have a fabulous meal at our hotel where I dined on the penne pesto picante with shrimp kebab.
The next day was the wedding, so we spent the afternoon exploring the many ruins in Antigua. An earthquake devastated the city in 1773, ending its reign as capital. Some of the must-see sites include Casa Santa Domingo, the cathedral of San Jose, Iglesia y Convento de las Capuchinas and catedral de Santiago. This list is a pretty good compilation of things to see.
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My next post will cover the rest of the trip, but for now I leave you with this image taken at Iglesia de San Francisco. It really made me appreciate modern day access to the epidural.
It was more than a year ago that Chris and I were having lunch at Mac McGee’s in Historic Roswell and the topic of Lili and George came up. Lili is a good friend that moved to Barcelona back in 2008, and in 2011, Chris and I had met her and her Dutch boyfriend George in Florence, Italy for two-weeks of stuffing our faces with the best food on Earth. We wondered if there might be an engagement any time soon. Twenty minutes later on the drive home, I received a text that George popped the question while they were visiting her family in Guatemala.
Since Lili is originally from Guatemala City, I finally got to dust off my passport which has sat lonely and unused in the fireproof safe since Connor was born.
We flew Delta direct from Atlanta to Guatemala City, meeting up with Angel, another old friend who was connecting from Florida. Chris and I shared our row with a Guatemalan that hadn’t been home for 10 years. A casual business or pleasure question revealed that his daughter had paid for his trip because he had been battling depression over a job loss. He was surprising his family who had no idea he was coming, as well as an online girlfriend he’d never met. I really hope that went well — especially the girlfriend part. He was texting before we hit the ground and she told him she had a “weird feeling.” “Premonition?” I joked. I hope that turned into a positive feeling whenever he dropped it on her that he was about to show up. Very nice guy…just not the conversation you expect when being polite. Angel, on the other hand, had a whole row to herself and sprawled out unconscious.
Lili had booked us transportation to Antigua, so the car met us outside baggage claim to make the roughly 45-minute trip.
I booked five nights at Panza Verde Hotel in Antigua, Guatemala, just around the corner from the hotel where Lili was staying and having her wedding. I was enamored by the pictures on their website and I wasn’t disappointed. Especially when they put a fresh, fruity welcome drink in my hand. I was very pleased with our stay. One particular woman that worked the desk was especially attentive to our questions and booking our reservations. Our only somewhat negative experience was when we decided to eat dinner at our hotel last minute. We knew we didn’t have reservations, but as all the outdoor seating was available, and it was early by latin standards, we hoped we’d be able to be seated. A man was working the desk and his manner left something to be desired. Since we did not have reservations, we could only eat inside. We accepted that expecting the tables must be set to fill soon. But when we finished our meal, they still sat empty and didn’t fill until later in the evening. His manner left me with a bad taste and the feeling that he was teaching us a lesson for not planning ahead. Granted, I will say I have never worked in a restaurant and there may be insider info I don’t know to the logistics of running one, but it rubbed me the wrong way. But aside from him, I recommend a stay there.
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Chris and I set out to explore. The first day was pretty casual…just walking the streets until we ran into Lili.
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On recommendation from Lili’s brother, we stopped for a bite at Restaurante Mono Loco. We ordered nachos — to share, thankfully — since the plate was as big as my head x 3. I also developed an affinity for Gallo Guatemalan beer, which is available in the States as Famosa.
We then returned to the hotel to sprawl out and rest before meeting the group for drinks at Lili’s hotel.
At this point, I should probably backtrack a little. Traveling to places like Guatemala, Cambodia, Thailand, etc. is my style. I love Europe and I have done a lot of traveling there, but it is definitely more in Chris’ comfort zone. Had it not been for the wedding, I’m not sure I could have sold Chris on the idea.
His primary concern was safety. Stuff happens everywhere, but he definitely was a little more concerned on this trip. Me, not so much. Safety should always be of concern, but I’ve been extraordinarily lucky in that I’ve never had anything stolen, and petty crime warnings for travelers persist anywhere you go. Unless there is a major concern for bodily harm, I accept it as the way things are.
The guidebook had warned about being out after dark. When the group decided to go get dinner after drinks, Chris was hesitant. We were still full from the nachos, but I wanted to go for at least one drink, then we could head back since we were tired anyway (suffering from toddler-lag if you will).
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As we headed back, passing through the square I even said to Chris, “See, it’s fine.”
Within 10 minutes, years of traveling luck ran out. I had switched from my usual duffel bag (as Chris calls my purses) to a small purse worn across my body. Everywhere I looked, people were carrying large bags. I even saw tourists toting around designer labels, which I wouldn’t do anywhere but home. Well, I mean, if I had any designer labels. We were cautious of other pedestrians, but as we reached a corner, I stepped to the edge to prepare to cross. Suddenly there was a car right in front of me, perhaps an inch from my body. There was this immense pressure pulling me that I couldn’t process. It wasn’t until I was l lying in the street that I realized the passenger had grabbed my purse at chest level and pulled until it broke, dragging me with them. Fortunately it snapped before I got dragged under the car or otherwise seriously hurt. As the proper smart phone addict that I am, I immediately patted my pocket and began stammering about how “at least they didn’t get my phone!”
He left nasty fingerprints all over my shirt. This photo doesn’t do it justice.
In fact, all they got was my driver’s license (I thought, well at least I can get a picture now that isn’t as bad as that one. I was wrong about that, I learned at the DMV upon my return), my ATM card, which was cancelled within 15 minutes, and my lip gloss (a**holes).
But the most significant thing they took from me was my ability to ever convince Chris to travel outside his comfort zone or think I’m right ever again.
We didn’t let that ruin the trip though. I just chalk it up to my luck running out. It was bound to happen someday — well, getting something stolen. I did not have plans to be dragged by some creep hanging out of a car, but at least I have a story. I’m just glad it wasn’t on one of my solo trips.
Connor has aged out of early intervention and will go into the school system where he can attend a special needs pre-school. You know what that means! Paperwork! Like this transition isn’t hard enough. Not only is it less time with my baby, but do you know how early schools start?! I’m gonna let you in on a little secret. Connor is a great sleeper. When he wakes up during the night, he typically entertains himself until he falls back to sleep. For this reason I have been able to consistently sleep until 8 every morning (arising even then only because of the necessity of meds) while your toddlers were screaming for whiny Caillou by 6:30. I can’t believe I have to give this up.
At any rate, I’m sitting here filling out ratings scales on my kid. But sometimes
0 for not true/Never/Seldom
1 for just a little true/Occasionally
2 for pretty much true/often/quite a bit
3 for very much true/very often/very frequently
just isn’t sufficient to answer the question. So I will instead provide short answer responses to the questions that I think need further explanation.
Is odd or unusual. Well ya’ll just jumped right in there didn’t you? What does that mean? Define odd or unusual. My son is not the typical three-year-old thanks to tuberous sclerosis complex, epilepsy and ASD, but odd or unusual? He loves trucks, books and puzzles. Not odd or unusual. Has been able to listen to All About that Bass more than 1,087 times without getting sick of it or trying to throw himself out of the car window. Very odd and unusual.
****
Gets invited to parties or playdates.He’s three. This question is clearly about me and my social skills. Three-year-old social lives are very dependent on whether mommy can put up a front that she’s sane in front of other people. And whether my friends provide alcoholic beverages at kiddie functions.
****
Acts before thinking.He’s three. I’m 34 and still trying to master this. I almost punched a girl in Kroger just because she mentioned attending an Ariana Grande concert while blocking my path to the Gerber Graduates.
*****
Is perfect in every way. Ooooh, you’re testing me again!
*****
Behaves like an angel.So basically this questionnaire is fodder to talk shit about me in the teacher’s lounge.
*****
Has trouble keeping friends. Well if his toddler buddies would stop taking HIS toys it would really bridge a gap. Or if he’d stop taking theirs. Or if the kid in the therapy waiting room wasn’t looking at HIS fish in HIS tank he wouldn’t have needed to push his head away.
*****
Is happy for others when something good happens to them.Well he doesn’t understand abstract ideas, only what he can see in front of his face. I’m sure if he understood graduations and promotions he’d be delighted for the recipients, but as of now, he’d much rather see you fall down or sneeze. But now that you mention it, he was pretty damn indifferent when I crushed his Daddy at Trivia Crack.
The scary thing is that I think Connor fares better on this scale than I do.
I’ve been informed that the way I eat candy bars is odd and unusual. (In sections, I eat off the surrounding chocolate and then eat the center).
Most of the stuff I get invited to these days is kid-related.
I probably should have thought to put a mug under the Keurig before turning it on.
The friends have been fading away. As much my fault as theirs. It’s not something I want, I just don’t have the energy to force myself out sometimes.. Have I been telling you we should meet for a drink? I actually mean it, I just need a kick in the butt. Relationships change. Sometimes when the gulf opens, I don’t know how to cross it.
Sometimes I’m happy for others. Other times I want you to admit you gave your kid a banana that wasn’t really organic. Or that your child didn’t recite Pi to the 1,000th place at 18 months.
But I am a perfect angel. So I guess that’s something.
We gave him a playroom, and he acted like he’d been sentenced to Riker’s.
We still have a child named Connor, in case my lack of blogging made you think he had packed up and run off to Borneo as revenge for us regulating his iPad time.
Let’s back up to February when we heard a loud thump followed by crying from his room. We ran in to discover that we had a Defcon 1 situation and Connor had escaped the crib. He wasn’t so much hurt as I think he was surprised by the floor, so he transitioned to the toddler bed that week. I did not expect it to go well. We moved more toys into the room, added a gate to the door and removed all potentially dangerous and/or greasy objects from his drawers. The first night he cried and yelled for two hours and I had to rock him to sleep. Not because of the bed, but because baby gates have always inspired great rage in him.
But after that, piece of cake. He would actually get in bed and stay there. I was shocked. I had expected him to trash the room and pass out in various spots on the floor. Instead, he stays in bed until light begins to peek through in the morning, and then he’ll either go play or drag objects into bed with him. In the beginning I’d find him passed out in a sea of pants and diapers he’d dragged from the drawers (yeah, no idea) but he has since graduated to his puzzles and trucks. The transition has been incredibly easy as long as he has his Pillow Pet dog to shine on the ceiling.
Staring into is even better than watching the ceiling.
March was probably the busiest month we’ve ever had.
Washington D.C.
Chris and I joined other TS Alliance volunteers from around the country again this year to meet with our congressional representatives and senators on behalf of our state. I’m excited to say that the Alliance got the most signatures ever in support of the Tuberous Sclerosis Complex Research Program. Georgia Senator Johnny Isakson was one of the authors of the senate Dear Colleague letter, and in the House of Representatives from Georgia, both Rep. Hank Johnson and Rep. David Scott signed on in support again this year. We were fortunate that the meetings were set for Wednesday March 4 since a snowstorm blew in and shut down the government on Thursday. Despite the cold, Chris and I got a lot of sightseeing done. And I only busted my butt on the ice once.
Chinatown
With Rep. Barry Loudermilk
With Rep. Hank Johnson
At Fado
With Sen. David Perdue
Headed to the Jefferson Memorial
Chinatown
Boston
We flew home from D.C. on a Friday, picked up Connor from my parents and flew up to Boston on Sunday morning. I had booked an early flight since this was our last trip given Connor is aging out of the TSC study and I wanted to make the most of the day. I was not aware at the time of booking that we would be losing an hour of sleep thanks to Daylight Savings. We boarded our 7:30 flight, took off, and landed right back in Atlanta 10 minutes later due to an issue with the landing gear. I was tired and disinterested in dragging a sleeping toddler off the plane so my thought was, if we gotta land on it, let’s just do it in Boston. If it meant spending the day in the airport waiting for a flight we weren’t going, but crazily enough Delta had a plane ready immediately so off we went. Boston was still covered in several feet of snow from the big storms the previous month. Roads and sidewalks were cleared, but space was tight with the mountains of dirty snow and abandoned cups on each side of the sidewalks (because apparently trash melts too when thrown in a snowbank).
While we were there we scheduled Connor’s annual scans. He had a brain MRI and an ultrasound (the recently updated protocol recommends an MRI of everything, but I just couldn’t seem to get someone on the phone that would make that happen this time). Since kidney involvement is common, we prepared ourselves for the possibility that Connor would have some sort of involvement by now, even though his previous scans at birth and six months were clear. When the tech came back to take additional photos after showing the initial pictures to the doctor we were pretty sure we were right. Connor does now have signs of TSC in his kidneys–innumerable minuscule angiomyolipomas. They are not problematic or affecting his kidney function, so we will just continue to monitor for growth. Hopefully they will not ever require intervention.
Weirdly, though I prepared myself for changes in the kidneys, I did not expect any change in the brain. There is no rational reason for that, I just didn’t. Turns out that one of his SENs in the ventricle has grown from 5mm to 7mm. It does not require intervention at this time, but the doctor recommended a followup in six months to be safe, rather than waiting the usual year.
So, not the best news, but certainly not the worst, or anything too crazy for TSC.
My crowning achievement of the trip was while Connor was having his MRI. I fell asleep in the waiting room, and awoke to the nurse telling us we could come back and see him. I jumped up in a half-asleep state of confusion not realizing my leg was completely asleep. I mean absolutely 100 percent numb and unfunctional. I crashed to the floor drawing a gasp of horror from an onlooker. I tried to get up, but couldn’t. My leg could not support any weight whatsoever. I looked really cool, but seemed unhurt…until we flew home that night. Then began the first of several days of my ankle looking like this:
But I must reiterate — I looked really cool.
Katie Beckett and IEP
Upon return I dealt with the immediate turnaround of Connor’s Katie Beckett renewal paperwork. They give you like a whopping two weeks to get it done, plus it came while we were out of town and was due when we would be gone again. Thankfully, we had an easy renewal this year (assuming we get re-approved), requiring only some basic forms and not the common 10,000 pages of therapy notes.
Then we had Connor’s first IEP meeting since he’s aging out of Babies Can’t Wait. He will begin at the special needs preschool in April, attending Monday through Friday from 8 until 12. It went pretty well. Their goals were well in line with what we were looking for. He will receive 45 minutes of OT, 45 of PT and 60 of speech a week. Plus he will continue with private speech, OT, music and aquatic.
Connor’s 3rd Birthday Party
We celebrated Connor’s construction-themed birthday a week early since we needed to be out of town for a wedding on his actual birthday. He was very accommodating in that he doesn’t know what date it is anyway and never has objections to being given trucks on any given day. Rosie the dog donned her construction gear and I even tried my hand at amateur cake making:
A few days later Connor went to my parents and we went to Antigua, Guatemala to round out a whirlwind month…but that’s my next post. Stay tuned so I can get all Rick Steves on you.
Let’s start with the game. It gets my standard review. Didn’t care. Didn’t watch it. Well, except for that fight at the end. That was kind of entertaining. I hate football. YES! I SAID IT! I live in the southeast where college football is king and I neither care about SEC football (I mean, I want the Dawgs to win, I just don’t need to watch it happen) nor do I care about the NFL.
As for the half time show — thank you, Missy Elliott. It should have been your half time show. Not that I hate Katy Perry or anything, but Cinna was right there on stage with you, and that was the best fire dress you could come up with?!
I always watch for the commercials, specifically the humorous ones, although it seems like those are fewer every year. Or maybe I just thought they were funny back when I bothered to go to Superbowl parties and started drinking at noon. Of course the humorous ones were always mixed in there with the stereotypical scantily clad, partying women selling booze.
This year was an interesting departure. Not a lot of naked chicks, but a lot of kids and dad commercials. It’s funny. If that change had been made just a few years ago, I would have thought, great, wonderful! About time. And then I would have gone on with my life. But watching the commercials, even as a mom was a strange experience.
Let’s start with THAT Nationwide commercial. I’ll give you props, Nationwide. You got the nation’s attention. You collectively sucked the breath out of every room that had a TV tuned to the game. Adorable kid, charming and quirky depictions of childhood imagination; we fell in love with this little boy in 15 seconds. Then you killed him. We were treated to visuals of overflowing bathtubs, cabinets opened to containers of poison, and a flat screen television smashed on the floor. I conducted a very unscientific poll and have gathered that 63 percent of viewers responded with What the f—! 32 percent responded with mouths gaping open. And the remaining 5 percent were lucky enough to be in the bathroom.
If it saves even one kid, it was worth it. But as a parent that is faced with the reality of childhood mortality every day, I sure didn’t like it or want to see it when I just wanted laugh at idiots doing dumb crap to get Miller Lite or Doritos. Connor does not have any life threatening complications, but seizures are always dangerous and unpredictable. And I know so many people via my involvement in cannabis legislation that are dealing with far more dire situations than I am. The TSC community has lost two teenagers recently, and I’m going to be selfish and say I didn’t want to think about that during the stupid Super Bowl.
That Dove ad with a sequence of young children hitting milestones and calling out to dad. Dad. Daaad! Sweet commercial. I was a little confused by the Cats in the Cradle Nissan ad. Seemed depressing. Here, buy a Nissan and drive away from your family! Not everyone interpreted it that way, but if you are familiar with the song, it was kind of hard to view the commercial in an uplifting manner. But at least dad was there to pick up his teen son at the end. Toyota depicted a dad raising his daughter and tearfully dropping her off at the end to her military deployment.
This shift in advertising should have been a welcome change to me, but it sort of wasn’t. Don’t get me wrong. I’m no fan of naked chicks spraying themselves with Coors Light. I’m not saying this a bad change. I just realized how different the experience of these commercials can be for some people in the special needs community, and especially for those who have lost or are facing losing a child.
Watching kids hit milestones and do things they can’t do yet, or may never do was extraordinarily painful for a LOT of parents, as I realized quickly from my Facebook feed. I know I felt a little funny, and I wasn’t even the target of the advertising. The Dove commercial with kids calling out for Dad…as I’m desperately waiting for Connor to say his first word made me stop and pause in the kitchen as I poured my drink. I read more than one thread online of parents that had clearly been taken out of the moment of enjoyment and festiveness by these ads. To be clear, no one was critical of the ads, it was just interesting to realize how much my own perspective has changed in the last three years.
As for me, next year I’ll probably watch Netflix upstairs, perhaps Nationwide Presents: The Never Ending Story 4: More About the Horse that Drowned in the First One. I’ll watch the funny commercials online later.
As I previously posted, Gov. Deal stripped HB1 of the growing option, leaving it as immunity only. There will be a rally at the Capitol tomorrow to demonstrate the support for in-state growing. Please attend to show your support.
There are currently 17 medical conditions included in the bill. However, the Georgia Sheriffs’ Association and District Attorneys’ Association do not support the expansion to other diagnoses beyond epilepsy. Please contact your local sheriff and DA.
It turned out not to be a good idea. Not a good idea at all.
I wasn’t able to get an appointment within the planned window of time when I called. I had to wait until after the new year and slots were few. I just took the first available. I figured when it got closer I’d either ask someone to watch him or I’d take him in the stroller. He’s pretty mellow most of the time. I felt if he was in the stroller, it would be doable as long as I had access to YouTube on my phone.
Atlanta was entering a week of Seattle-esque weather so I was a little cranky to start with the morning of my appointment. As I began to put our stuff in the car, it hit me. The stroller was in Chris’s car. My husband mostly works from home, but today he was at the office.
There were lots of four letter words as I realized that this appointment was going down like the Hindenburg. A toddler at an appointment is one thing. A free and unconstrained toddler is another. And with less than an hour until appointment time, there was no way I’d risk a cancellation fee. Emotionally that’s akin to paying to park, when walking a couple blocks will get me a free space.
Ah yes, the space saver high chair that fits on a regular chair. He could be locked into it off to the side of the dentist cube, yes? That’ll do. I was feeling very MacGyver and brilliant. Connor is always fascinated when the chair within a chair is placed on the floor. He will sit in it just because of the novelty.
I discovered his love for sitting in the chair without a chair when I set it on the floor during a weekend in the mountains and he didn’t want to get out of it.
Problem solved, we headed off.
First he decided he was not sure he wanted to walk into the dentist office so he plopped down on the ground outside the door. I was losing my grip on the chair at this point so I set it inside the hall so I could encourage him to keep going. He came in the first door and then decided he wanted to hang out right there outside the actual office, so he plopped down again. He was eventually coaxed into the waiting room by the sight of his magical throne…on the floor.
My dentist is never on time, no matter what time of day the appointment is. I will say that this particular morning they were only 15 minutes behind, but Connor’s unwillingness to settle on one place to sit made it feel like much longer. At one point I thought he was going to try and make off with an older woman’s walker.
When the assistant finally came to get me, I made a point to loudly blame my husband for the odd situation. The part about him unexpectedly going to the office was a lie. The part about him making off with the stroller was true. A lady laughed and I could tell she was admiring my brilliance in the face of such hardship.
First problem was that they needed a full set of x-rays, probably because I have forgotten to go since Connor was born. So he had to sit in the chair outside the cube. He didn’t care for this plan and he let it be known. Loudly. One of the hygienists walked him around the cubes while my gag reflex went into the most overreactive state I have ever experienced. It was seriously ridiculous. Every time she stuck that cardboard in my mouth, I felt like a cat with a hairball.
Connor returned for my cleaning and he was locked into his precious chair. Except apparently he only likes the chair on the floor if he’s not locked in. And it’s his decision. Toys got tossed, his new toothbrush gifted by the hygienist got tossed — come to think of it, I haven’t seen the toothbrush since. Guess it got tossed in a corner somewhere. Or it’s at the bottom of my purse. Either way, gone forever.
I could hear myself thinking from just a few short years ago from another cube. “This lady seriously brought her kid to the dentist? It’s called a babysitter. I will never do that when I have a kid!”
My hygienist tried to get him to color, despite my explaining that with his delays, we weren’t quite there yet. But she did give it the old college try. She was very nice, considering. I think it helped that her first, now adult, child had special needs, too. Another employee came to walk him around and keep him busy while I was being cleaned. He returned for the wait for the final check by the dentist. He explored the mechanics of climbing on me and jumping off me in great detail. When the dentist finally came, my hygienist corralled Connor for the check, where once again I was encouraged to remove the partially emerged wisdom tooth that didn’t make an appearance until my 30s (it is my only wisdom tooth, even on x-ray). I would have asked a couple of questions about my teeth, including if I should do anything about the one I recently chipped. It’s really small and Chris swears it’s not noticeable, but I’m kind of obsessed with it. But he took off before he could be handed toddler duty. Probably for the best, as one of my questions would probably have been answered with, “Stop drinking coffee.” That’s never going to happen. In fact, I chipped my tooth on my coffee mug.
Now that the visit was over, Connor decided to be cooperative and did a good job of waiting while I checked out and following me to the car. I congratulated him on the success of his mission. I will never try this again. But that’s okay. Vengeance will be mine.
Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.
I was just 24 weeks pregnant when the words “tuberous sclerosis complex” were muttered to my husband and me, and pamphlets about this disorder were thrust into our hands by the doctor. They found cardiac rhabdomyomas on my otherwise healthy baby boy in utero. From that point on, I had biweekly monitoring by multiple doctors, scanning every bit of our child to detect any other marker of TSC and they did not find anything, even after a fetal MRI.
40 weeks. Everything about labor and delivery couldn’t have been more perfect and our son scored wonderfully on Apgar and hearing. After four days and some NICU monitoring, we were able to take our little man home to enjoy. We didn’t realize how soon that would change.
ight arm. I had done my research on TSC and the different types of seizures I should be on the watch for. Intuition was telling me these WERE seizures. My husband was more optimistic, but the twitching was increasing, so off to the pediatrician we went. Following that appointment, we were immediately sent to be admitted at the hospital after our pediatrician got to witness what I had been seeing all along.
Mixed Up Mommy 