Tabula Rasa

Smooches with Aunt Dani


I'm not a big fan of New Year's Eve - the pressure I put on myself to have fun nearly always backfires. For instance, one year I convinced my parents and best friend that we HAD to do the New Year's Eve event sponsored by the downtown association. We had our choice of free special events taking place all across the city, so we braved the frigid temperatures and waited in line for our top choice. After waiting and waiting and waiting, we were told the event was full. We repeated this cycle several more times before retreating to dinner at the only open place in town - the Sizzler buffet.

Still determined to have fun (damnit), I dragged the group to the last remaining event that wasn't full: open mic poetry at a coffee shop. We bit our lips in an effort to keep from laughing as bad poet after bad poet took the microphone and regaled us with their equivalent of Phoebe's "Smelly Cat." On the car ride home, we vowed "never again."

This past year, I decided to make my own fun by hosting a party at our new house. Never mind that we had a long list of boxes to unpack and renovations to finish, as well as a colicky newborn. The party was OK, but by the next morning I had worn myself down into a sad stump of a human being. I spent the day battling a second round of stomach flu for the month and watching a Jan Brady marathon. A horrible, horrible combination.

Despite my bad luck with the holiday, I do love the idea of New Year's resolutions. I love the idea that once a year I get a blank slate - a chance to upgrade to a better version of myself. (This may also explain my guilty pleasure - watching makeover reality shows. Don't judge.)

My track record with actually keeping resolutions is pretty poor. In fact, the only resolution I can remember keeping was the year I resolved to join my church's young adult group. I had just ended a two+ year relationship and was ready for a new start with new friends. The very next Sunday I sat down at my first-ever young adult brunch. A woman across from me leaned over and said, "You should meet our friend, Robbie. He's an engineer, so make sure to tease him about it."

Two months later we were married....so at least I kept the most important resolution.

This year my biggest resolutions are to 1) Be more positive 2) Be more patient and 3) Create a regular yoga practice. Pretty typical stuff I suppose, but I know the hardest one will be remaining positive. Unfortunately, this resolution was severely tested before I even got out of the gate.

On New Year's Eve this year, we were preparing to fly home from visiting family in Utah. We were exhausted from a week of trying to wean Fionn from nursing, only to have our progress destroyed when he came down with a severe upper respiratory infection and ran a high fever for nearly 5 straight days. Needless to say, my resolve not to nurse him quickly dissolved. (And now that I've backtracked, he's on to my evil intentions and wants to nurse nonstop all day, just in case I try weaning again. You can imagine how this is going to affect round #2.)

Fionn was finally on the mend by New Year's Eve and Emerson and I had escaped with only minor colds, but collectively we were still sleep-deprived zombies. I was also on edge before we even walked into the airport because my experience flying to Utah had been disastrous.

I had to go to Utah a week earlier than Robbie, so that meant flying alone with two toddlers. When we arrived at the airport at the ungodly hour of 5am, I found one open kiosk for check-in and a line that ran the length of the airport. Despite several efforts to make it work, we were informed that I could either get on the plane or check in my luggage, but not both. So I left everything with Robbie and rushed the boys through security, without a stroller since it had been accidentally left at home. The security guard stopped and informed me that I needed to take Fionn out of the sling, so I complied despite the enormous effort it took to undo everything while simultaneously herding a 3-year-old who was livid about having his shoes removed. Then the guard and her co-worker started in on the "Oh what beautiful white hair they have! Where did they get that white hair?"

I have never wanted to punch someone so badly. I kept explaining that I needed to hurry or we would miss our plane, but the guard informed me that we had to wait for a male guard to come pat down my one-year-old son. Then she continued to question me about their hair. Clearly frantic, I gave them the pat answers about albinism and then reiterated that I needed to leave NOW. They continued on about their hair and eyes, completely oblivious to my pleas. Finally, the co-worker realized I was upset and said to her friend, "Oh, you don't need a male guard to pat down a baby. Go ahead and do it." So the guard patted Fionn on the back once and then ushered us through.

By now we had four minutes to make it to the gate, which was all the way across the terminal. I asked the women if they could get a ride for us, and she smiled. "We don't have carts in this part of the airport. What did you say the name of their condition was again? Albino-ism?"

This time I ignored her, scooped up two children, two carry-ons, two pairs of shoes and ran as fast as humanly possible. We arrived at the gate seconds before the doors closed. Then we proceeded to wait on the plane for 45 minutes while they loaded the luggage - except mine of course. When the flight attendant lectured me for not telling him about the boys' peanut allergy soon enough (apparently telling them during reservation and check-in was not enough) and then he angrily announced to the rows around me: "You can't have peanuts as an option because these people have peanut allergies," I was teetering on the edge. One more event and I would've gone to a dark place - a place from which there is no return.

Anyway, this is all to say that I was less than patient on the ride home. When Robbie informed me that he had accidentally left his car keys (our only set) in his coat pocket and then put his coat in the checked baggage, I resisted the urge to freak out. True, I had warned him to empty his pockets first and he had ignored me, but what were the chances of that one bag being lost? Stay positive, stay positive.

When we finally pulled up to baggage claim that night, I breathed a sigh of relief as first one, then two of our bags came into view. Then the bags stopped coming. Our third bag, the one with the car keys, was no where to be seen. I thought to myself, "It's only New Year's Eve, so technically I don't need to be positive until tomorrow." Then I went ape sh** on my husband. A $60 cab ride later, we were home and I had settled down enough to ring in the New Year with my sheepish husband and two now-wired children (they slept for part of the plane ride).

The next day, I felt the sense of renewal I had hoped for. This was it - I was a positive woman from here on out. Look out world - there's a new Pollyanna in town!

Robbie had a plan to drop our spare car keys off at the airport so our friends flying in that day could drive it home for us. The luggage reappeared and was delivered to our house at the promised hour. Things were slowly getting back on track. Then I began to unpack the wayward bag, full of clothes my mother had generously washed for us. I felt nauseous and light-headed within a few minutes. A horribly familiar smell emanated from every article. Then I unrolled a pair of pants covered in wet stains - gasoline. Somehow they had poured gasoline all over a corner of our bag and then delivered the noxious-smelling package to our house without a second thought. "Really?" I hissed at the universe. "You couldn't even give me one day to gird myself?"

Luckily only one pair of pants was ruined, but everything had to be rewashed and the duffle bag thrown away. We called the airport and they informed us that if we wanted compensation, we'd have to drive the 40 minutes back to their office and prove it.

So we did, leaving a few of the worst smelling clothes inside as evidence. The man at the front desk nearly fell off his chair when Robbie handed him the bag, the smell was that bad. He wrote down a list of clothing in the bag, threw it all away, and then told us to rebuy everything on the list. We would have to submit receipts for the new items and within a month, a compensation check would be issued.

We kicked ourselves for not leaving all the clothes in the bag - or at least the crappy ones. But the next day, we started our shopping by going straight to J. Crew and buying two shirts for $100. Probably not a good way to rebuild my karma, but I was already feeling more positive.

So here's to a New Year, to taking baby steps toward a better me. I may not be Pollyanna yet, but there is still time and hope. And if all else fails, good drugs.

Travel Log Part Four - The Final Stretch

Playing at the Smithsonian Museum

(In the spirit of Christmas, let's pretend this post is not several weeks late!)

So the final day of the study had a fairly light schedule, which was a relief for the whole family. We originally had ambitions of taking the metro into DC every night to see the sights, but we quickly realized we needed to rest up at night as much as possible. Despite our efforts, I was feeling exhausted, sensed sickness coming on, and was in a generally fragile state of mind come Wednesday morning.

The first appointment was with the Occupational Therapist in a playroom similar to the rooms at preschool. The boys were thrilled at the chance to sit and play instead of being poked, so they immediately went bonkers. I was surprised that while the OT and her assistant asked the typical developmental questions and observed the boys doing a few key activities, their focus was actually on vision. Apparently she has a lot of experience with adults with albinism and helping them adapt, so she had a wealth of suggestions. She gave tips on everything from slanted boards to help with writing and coloring, to techniques for getting colored tints in his prescription glasses to help with glare and fluorescent lights. In short, it was a great experience.

We were riding on this high when Dr. Adams came in to inform us that some of the results from Fionn's blood test came back abnormal. Since our second and final appointment for the day was a wrap-up session with him in the afternoon, he asked us to get Fionn's blood drawn again right away so that he could have the results in time for our meeting. Apparently, the elevated level could indicate a problem with the liver, so he wanted to confirm the results before taking any further action.

As we walked down to the phlebotomy office once again, I felt myself coming apart at the seams. If it had been any other organ I might have kept cool, but Fionn had an unexplained spot on his liver during my pregnancy ultrasounds, so my thoughts immediately went to dark places. When the man at phlebotomy looked up from his desk and saw us standing there, his face looked equally dark. "Weren't you guys in here yesterday? They're making these poor kids do more blood tests?"

His empathy and care as Fionn had to get his blood drawn again - now on the same arm as his biopsy - was touching. It also made me want to fall apart even more. We spent another lunch in the basement cafeteria and I silently cried through the whole meal. I knew I was overreacting, but sometimes all I can do in moments like that is sit back and watch myself dissolve.

Luckily, both boys fell asleep just in time for the meeting, so at least our appointment was nice and quiet for once. Dr. Adams showed us that the test results had come back elevated once again, but since other results came back normal, he was at least able to rule out liver problems. Whew!

He explained that when you do this much detailed testing, you're bound to find something abnormal, so most likely it was nothing. He gave us some information sheets on a condition where these particular levels are consistently elevated in young children, but they were vague at best about what the condition meant. There doesn't seem to be any symptoms, but it is correlated with other conditions. Basically he sent the results to our pediatrician with the suggestion that we test every six months to determine exactly what's going on.

The rest of the appointment was spent answering whatever questions we had for him about the study and albinism in general. Out of curiosity, I asked what was the largest number of siblings with albinism he had seen in a single family and he answered "Three." We're not planning on having anymore, but every once in a while I ache for a daughter and wonder what the odds of having three kids with albinism are (I mean I know statistically, but statistics aren't always realistic). After the appointment, Robbie shot me a look, "Did you ask him that because you plan on breaking the record?"

I assured him that I could never handle four children, much less the bill for sunscreen, but it is an interesting academic exercise to ponder. There are some geneticists who claim that despite the typical 1 in 4 odds for exhibiting a recessive genetic condition if both parents are carriers, there are some instances when all the children are born with it. This has led them to wonder if something in the reproductive process is selecting for that condition. That's my shoddy attempt to explain the scientific reasoning, but hopefully it makes some sense.

With the study now officially done, we headed back to the Inn for a dinner sponsored by a local hotel. I should explain that earlier in the week, we had met an adorable 13-year-old girl who was staying at the Inn with us. She was bubbly and funny and talked so much I wanted to collapse with exhaustion. But I adored her. We talked about boys and school and life as a teenage girl - all the things I couldn't wait to talk about with my own daughter someday. After a couple of nights, she also revealed that she had a huge crush on my husband - or "Mr. Robbie" as she called him.

One night on her way to bed, she asked me if she could give me a hug goodnight so she had an excuse to give Robbie a hug too. Of course I agreed and had to stifle a giggle as she gave him a quick hug. On her way out, she ran over to whisper in my ear, "It was SO good...my knees are shaking!"


Playing at the Children's Inn

That is why I was not surprised when we returned from dinner at the hotel Wednesday night to find her - and several of her friends - waiting at the top of the stairs for us. Apparently word had spread about her crush and they were waiting none-too-patiently for Robbie's return.

Unfortunately, I wasn't feeling well enough to be in the playroom all night, so I left her without a talking companion. When we packed up and left the next morning, I wrote her a note to say my goodbye and coached Robbie as he wrote his own note. I knew it had to strike the right chord so she would have something to swoon over without making him sound creepy. We settled on a post script that read something like: By the way, you're a cute girl who will get a lot of boys, so make sure you choose carefully! I got an email from her a few days later and apparently the note was a huge success.

Can't say I blame her - my Mr. Robbie is quite the heartthrob.


Robbie in front of the Smithsonian

Travel Log Part Three - Tough Tuesday

Playing at the Children's Inn

Monday ended with a biopsy and Tuesday began with a blood draw for the whole family. I was starting to think they should have scheduled these things for the very end so the kids wouldn't be too traumatized to even walk into a doctor's office, but I'm sure they have a method to the madness. This added yet another screaming session from restraining them and yet another bandage for Emerson to point to and say in the world's most pathetic voice, "Boo boo!" Dr. Adams had mentioned they would apply a topical numbing cream and he put the orders in, but somehow it got lost and was never done. I do have to say, however, that the staff of Phlembotomy took extra care to get the kids in first and make sure it would be as fast and painless as possible.

When we talked to Dr. Adams on Monday, he mentioned that the opthalmology appointment scheduled for Tuesday was always the roughest part for families. I knew it would be long and frustrating, but we've done many 4-5 hour long opthalmology appointments in the past three years, so I didn't think anything of it. I should have listened.

The appointment started with the usual goofy voices, barking puppets and bouncing teddy bears to get the boys to hold still while the doctors looked at their eyes through thick lenses or tested distance vision. Despite the fact that Emerson was reliably matching the black and white pictures opthalmologists use during our time with his vision teacher, of course he refused to cooperate at the appointment.

They did use the Teller Acuity cards to get an estimate on both boys, which was around 20/400 for both. It's actually better than I predicted for Emerson, so that's a start. They said Fionn's vision is at the very, very bottom of what's considered normal for his age range while Emerson is well below the normal range for his age. So in that sense our predictions were right: they both have impaired vision, but Emerson's is worse.

On the down side, both have developed an astigmatism, so we need to better about making Emerson wear his eye glasses and Fionn needs to get a pair as well. Keeping glasses on that wild child is going to be a pain in the a** to say the least. But I guess I should have seen it coming (no pun intended).

During the day, we also learned that two of the doctors, including the main opthalmologist, Dr. Brooks, trained with our local doctor, Monty DelMonty (I'm purposely spelling it wrong in the hopes that he won't decide to google his name one day and discover this post). We are certainly lucky to have such a great doctor in our area and this conversation confirmed that. But I do wish he would work on his bedside manner a bit more. The initial diagnosis appointment for Emerson was a little rough on us and even at our last appointment, Dr. DelMonty was shaking his head over the fact that we hyphenated our kids' last names.

"What are these poor kids going to do when they get older and get married? Hyphenate it again?" I couldn't believe a man named Monty DelMonty was seriously criticizing my naming choices, but I digress. :)

Dr. Brooks was hands down a great doctor and wonderful to talk to. At the wrap up appointment near the end of the day, he was working with a nearly comatose Emerson, so I was doubtful that we could accomplish anything. However, he managed to get him to hold still and even smile by singing the entire "Elmo's World" theme song over and over again in his best Elmo voice (and with no shame despite a door open to the waiting room.)

The rough part came in the middle of the day when they dilated the boys' eyes and then sent us down for photos. You can imagine that if you are already light sensitive, having your eyes dilated and then having your head put in some machine that shines a light at you would be pretty bad. Then add to that being an antsy, hungry, tired three-year-old who must hold still while they meticulously focus the cameras and shoot flashes at your face, and you can see where this all went south very quickly. By the end of his session, all of us were sweating and Emerson was nearly hoarse from the protesting.

We learned from other parents doing ophthalmology appointments that day that the photographs weren't nearly as bad for them, but I don't know if that's because their children aren't photosensitive or because my child is just a lot less compliant. Fionn did ok, but he had taken a nap and had to be woken up well before he was ready in order to take the pictures. I expected screaming to ensue, but our biggest issue with him was getting his tired, wobbly head to stay up and his drooping eyelids open.

By the end of the day, we were all beyond exhausted. We dragged our sorry butts back over to the Inn and - by some miracle - managed to get ALL four of us down for a three-hour nap. We woke up and went straight to the community dinner, which gave us a chance to relax and talk to other families.

The information we've gathered during this trip has been extremely interesting and helpful, but the best part has definitely been all the people we've met. (I know, I sound as gushy as someone who just got back from highschool band camp or a corporate retreat to build camaraderie, but bear with me.)

While we were at the ophthalmologist, we heard from the nurses that there was another family whose four-month-old son was recently diagnosed with albinism in the room next to ours. We managed to track them down just before they left, so we talked over lunch. Their little boy was scrumptious and it felt great to talk to someone else who can relate to our concerns and questions!

We've also met so many great families at the Inn, especially during our many hours in the main playroom. At first I wasn't sure what the etiquette would be - I mean, I certainly didn't want to walk around saying, "So, what are you in for?" I figured many families wouldn't want to talk about it, but I soon discovered I was wrong. Most conversations went very quickly to that subject, but I have to say I found talking about the boy's issues with these families therapeutic rather than annoying. Even though the issues vary widely and run the whole gamut from minor to life-threatening, I think we all shared a common thread. We had our world turned upside down, even if only for a short time. We've felt vulnerable, helpless, and frustrated. And we've all fallen head over heels in love with these tiny people we never expected to be in our lives.

We've met children with Joubert's syndrome, digestive issues, a brain tumor, fluctuating hearing loss, vision problems, etc. In only a few short days we were wishing each other good luck as we headed out for the morning, waving at each other in the halls of the hospital, comparing notes on appointments, and sitting down to dinner together at night. I looked on this trip as a chance to help science while getting some sight-seeing in, but I don't even care that we've only been downtown once. It's a strange little microcosm of the world, but I'm certainly going to miss it when we leave Thursday night.

Travel Log Part Two - Manic Monday

Anyone who knows us knows that we are not a morning family - so you can imagine our terror when we reviewed the schedule and realized we had to report to Admissions at 7:45am. By the time we got all four of us up, dressed, fed and out the door, we were a...tad...late. Luckily, we quickly realized that they pad appointments with plenty of time for just such occasions.

It was mainly a lot of paperwork and the Admissions playroom wasn't open yet, so I was grateful for the bag of toys we brought with us. (For other parents, the Admissions playroom is open to any patient and is FULL of great stuff. The pediatric department also has a playroom, but ophthalmology doesn't, so come prepared.)

After Admissions, we reported to Pediatrics, where they took vital signs and the screaming commenced. This part wasn't painful, of course, but trying to restrain my children is akin to murder. Eventually we were introduced to Dr. Adams, the man in charge of the study and one of the nicest people we have ever met.

He brought us into a small room to do an interview/medical history and then explained more about the study. What impressed us most was his willingness to stop and answer all our questions patiently and completely. In fact, every specialist we've met the past couple of days has been wonderful - patient, knowledgeable, personable. We've talked with many other patients visiting the NIH for various reasons and they've all said the same thing: Wouldn't it be great if all hospitals could be like this? Wouldn't it be amazing if all doctors treated their patients like people instead of the next number in a long line? If only...

One of the most interesting things we learned from Dr. Adams is that researchers are on the verge of making gene therapy for people with albinism a reality. They are working on ways to trigger pigment production in the cells and the treatment may be ready "in the boys' near future." Most likely it will be used for creating pigment in the eyes to reduce photosensitivity and possibly improve vision, although treating the skin may also be a reality for people who have a lot of sun exposure (such as people with albinism in African countries).

Once the treatment is ready, it will be tested on adults first, but he and the ophthalmologist, Dr. Brooks, assured us that it would become available to children soon after. We've heard about this treatment before, but I guess I didn't comprehend how close they truly are to making it happen.

Before breaking for lunch, Dr. Adams sent us down the hall for medical photographs of both boys. A quiet older man met us at the door and led us into a tiny photography studio cluttered with lights and equipment. The whole experience was easy enough, but I found it a little unsettling nonetheless. Something about the combination of flashing lights, a background of graphs and numbers, and the fact that both boys had to stand there in nothing but their underwear made it feel like Glamour Shots meets police mug shots meets autopsy photos. Weird.

At the end, the kind man offered to take a nice family photo in front of a normal background. He even took down our address so he could mail us the result, but somehow I doubt it will be Christmas card worthy. (Not because of his skill level, just the fact that the boys never look at the camera at the same time and we were a little disheveled from a long day.)

After lunch, Dr. Adams applied some numbing cream to the site of the biopsies and finished the interview. Emerson, unfortunately, found a way to smack his head and then - after a good cry - passed out in my arms. Dr. Adams used this rare quiet time to do a brief physical exam, including pulling down his pants to inspect his scrotum. He left to get some paperwork and I leaned over and whispered to a still-sleeping Emerson, "Don't ever let a strange man touch your balls while you're sleeping ever again." Robbie nodded and chimed in, "And that's why you should never join a frat."

When we were done laughing at our own hilarity, we took a few minutes to enjoy the peace and quiet of both boys sleeping (Fionn had nursed himself to sleep during all this). At one point, I whispered to Robbie, "It's so nice when they're quiet like this." And just as I finished my sentence, little Fionn let out a loud fart, sending us both into fits of giggles again. Yes, I'm afraid having two boys has finally corrupted me.

Since Fionn of course woke up first, he and Robbie went with the doctor to another room to do the biopsy. The process involved punching out a tiny circle of skin on the surface of their arms so that those cells could be grown and studied later on. It's definitely the worst part of the entire study, but it's also the most important.

Despite being all the way down the hall and behind two closed doors, I could hear Fionn screaming the entire time. Not from the procedure, mind you, just from being restrained for that long. The actual process should be painless due to the cream, but it's difficult to really know since neither child can talk. God I hope it was painless.

Poor Emerson fell asleep with a bruised head and woke up just as they did his biopsy. The worst part for him was the bandage since he has sensory issues to begin with. I thought his improving speech would help since I could at least explain to him that it would be over soon and we'd get a treat, etc. But along with speech comprehension comes speech expression. After it was all over, he kept looking at his bandage every once in a while and whimpering "Mama, boo boo" over and over again. Do you hear that thumping? It's my heart being used a punching bag.

Robbie and I talked a lot about how hard it has been to put the kids through all the poking and prodding, but what has hit us hardest is the thought that many parents watch their kids go through MUCH worse procedures for MUCH more dire circumstances all the time. How they get through it is beyond my comprehension, truly.

The rest of the night was spent traveling to downtown Bethesda for dinner. We were all grateful for some fresh air and the boys were excited to do the train again. We chose a nice Indian restaurant and then immediately regretted it. We've been desperately clinging to the idea that our family of four is still capable of eating at a nice restaurant, so we keep trying. And by the end of the meal, we have broken a sweat, caused enough of a mess to warrant a 30% tip, and only wolfed down our food in rare spare moments between entertaining both kids and trying to get them to eat something - ANYTHING. As this scene unfolded yet again, I sensed something different in the air...it was our spirits breaking.

Robbie looked at me with exhausted eyes and asked if I was interested in doing the free community dinner at the Children's Inn the next day. We had skipped it the previous night because we wanted to be out on the town. Plus, we felt a little strange taking a charity meal since our kids were being studied, not receiving treatment for some horrible disease. But it was becoming rapidly clear that a night in would be a good idea for everyone, so I replied, "Definitely. What about you?"

He heaved a sigh. "Definitely."

And with that, we bid adieu to the end of an era. Our nice nights out are going to be dinner in, takeout, or cheesy kid-friendly chains for the next three years.

Yes, that era went out...not with a bang, but a whimper.

Travel Log Part One

The boys test out their new digs at the Children's Inn

There are several reasons why I should be fast asleep right now and several reasons why I woke up and can't sleep right now - so I thought I'd use this chance to write a short "wearing no contacts at 2am but this is my only shot at the computer with all the work Robbie's trying to squeeze in" kind of post. (I'll try not to be too heavy on the details, but I also want other albinism families considering this study to get a sense of what it's like.)

We arrived in DC yesterday after a mercifully short flight and quickly discovered we should have packed lighter jackets. Ah, 56 degrees is bliss.

Most of the day was spent waiting for the shuttle, getting to the National Institute of Health where we were screened and I.D.-ed (is that a verb?), and then settling into our new home at the Children's Inn. The campus is beautiful and the Inn is a humbling example of the depths of human kindness and suffering. This is the place where children undergoing treatments for cancer or involved in studies for genetic conditions stay with their families. Everything is free to the families, including shuttle transportation, access to computers and long-distance calls, weekly dinners, family activities, etc. And the facilities offer full use of high-end kitchens, playrooms, game rooms, etc. They try to make it a home away from home, but it's more like a little Utopian community.

Of course, we are constantly reminded of how fragile and often unfair life is as well. During the shuttle ride up here, I met a woman and her family who have been coming here every other year for years because their daughter has early-onset schizophrenia. I tried to imagine how hard it would be to go several years thinking you had the daughter of your dreams...and then one day your teenager is hearing voices and you're faced with the reality that you'll be taking care of her the rest of her life.

Later, as I flipped through a copy of Parenting magazine left sitting in the communal kitchen, I came across an ad that featuring a beaming little boy and the headline: "Now I get TWO cakes every year - one for my birthday, and one for the day my cancer went away!" The contact information for the drug company had been carefully cut out.

At one point, I mentioned the family affected by schizophrenia to Robbie and he nodded. "I have a feeling we're going to leave this week with a lot of perspective," he said.

I couldn't agree more.

One day into our trip, there are already several highlights. For us, they would include things like meeting many great people and seeing the National Mall at night. For Emerson and Fionn, they include a magical day full of endless escalators, elevators, moving walkways, planes, buses, trains, and even some crazy two-story high airport shuttles that looked better suited to driving over the surface of the moon.

I have a huge passion for traveling, but I have to say that despite the many inconveniences of traveling with small children, seeing the experience through their eyes only heightens the excitement. During the shuttle ride to the NIH, for example, the windows were so large that Emerson could see cars driving by on the freeway for the first time in his life. Every car, SUV and truck that passed was another thrilling adventure!

As we rode the metro downtown, I watched his eyes get bigger and bigger the faster the train moved. From his perspective, I realized the tunnel streaming by and the pulse of lights did look a lot like hyper-drive in some space movie. Oh, and don't even get me started on the Christmas lights. At one point he fell asleep in the stroller, only to wake up an hour later on a street filled with lighted trees and cars rushing by. We were walking along in silence and then suddenly his head pops up and he shouts "OH WOW!!!"



Priceless.

Ok, now I should really try to get to sleep. We have a long day of testing ahead of us, so wish us happy children and good hospital food.

Utah or Bust

We survived the 8 hours of travel and made it to Utah in one piece! My mind is heavy right now from staying up late to research speech disorders, so instead of being a Debbie Downer (wah wah), I'll post some pics from our trip so far:



Fionn, post first haircut


Cousin Jackson tries to explain to Emerson why he should want to crawl into this cave at the dinosaur museum.


Fionn takes in the sights at the museum


Trampoline antics (That platinum blonde is my sister- not Emerson and Fionn's secret birth mother. Despite what she tries to tell strangers.)


In the swing of things

Travel Adventures - And Why Thomas the Train is Super Freaky

I love traveling...partly because I don't have to cook or clean up after myself or face bills or meetings or homework for a given amount of time. And partly because...I don't know how else to describe it except through the senses. I love the way all the noises are heightened when you pack a car full of luggage in the pre-dawn hours, I love the smell of hotel rooms (probably a combination of an ancient air conditioner running and bodily odors from the thousands of people who stayed before me, but whatever), I love the satisfaction of eating a big meal in a strange restaurant after walking all day...I could go on and on.

As I mentioned before, we traveled as a family to Chicago a couple of weeks ago for our first-ever albinism conference. We went by train, which is my favorite way to travel. There's something romantic about train travel - it reminds me of the old movies where the doe-eyed heroine stands on the station platform waving goodbye to her soldier one last time before being enveloped in a cloud of white steam and smoke.

The reality is that you stand in a dingy glass box until the train pulls up, then you heave your luggage on board and try to find a seat with the maximum amount of leg room and minimum amount of stains. I travel to Chicago on the train a lot for school and despite the bare minimum of luxury, I wish I could take the train everywhere.

This particular trip was exciting because neither of the boys had ever been on a train. Fionn was more impressed with the scenery whirring by then Emerson, but Emerson still found plenty of ways to entertain himself. Unfortunately, every way involved making us walk up and down the length of the train. For nearly four hours straight.

Pretty soon he developed a routine where he would jump at every passenger as he passed them, giving out a mild screech in an attempt to "scare them." Luckily the train was loud enough that it wasn't obnoxious, but I could still tell when he and Robbie were coming toward me by the succession of "ahhh"s that got closer and closer. Half the people smiled sweetly or waved - the other half were obliviously listening to iPods or crunched against the window sleeping. Emerson didn't seem to care - or else couldn't see their facial expressions - he was having a blast. In fact, he spent a few minutes jumping up on his seat to play peek-a-boo with the man behind him, then falling over with laughter. He never noticed that the man was asleep through all this. I guess sometimes low vision has its benefits!

After a long day of traveling, we collapsed into our beds and got a few hours of sleep before getting up and repacking everything again. I immediately wished we had stayed an extra night so I could have some recovery time, but such is life.

The conference had fairly good attendance for only being a "mini regional" conference and had some useful information. For example, we learned about a new study on albinism going on at the NIH in Washington, D.C., so we're definitely going to get the boys involved in that. Not only do we get a trip to one of the greatest cities on earth, we also get to help researchers better understand a rarely-studied condition.

The other exciting part of the conference was meeting fellow parents. One woman had a little girl only a couple of months older than Fionn and the two of them hit it off (you know, as much as two infants can). They were fascinated with each other, which was adorable to see. Unfortunately there weren't any children with albinism Emerson's age, but he made many "pigmento" friends.


(Annie and Fionn in the lunch line. Yes - I always keep a cheesy grin on my face.)

At one point, the parents broke into their own group for discussion time. Most of it was spent on IEPs in school, which I'm not dealing with yet and therefore try not to think about too much. But during this discussion, one veteran mom began to talk about the importance of taking care of ourselves so that we can better deal with the issues that come up around albinism. As she listed all the things we as parents have to deal with - stares, comments, school issues, adaptive tools, etc. - I found myself choking back tears. It hit me that for once in two and half years, I was surrounded by people who knew exactly what I was dealing with. Of course many parents talk over email and webboards, but having a conversation with someone in person is so much more meaningful.

It was also wonderful to interact with people and not have to launch into an explanation about albinism. Someone would "cootchie-coo" one of the boys and we'd wait for the inevitable questions...then realize that in this crowd, we didn't have to say anything.

Ah, bliss.

I only wish it was longer, but at least it gave me the motivation to go to the national conference in D.C. next year. We should have gone to the one last year in Las Vegas, but I didn't think it would be helpful with Emerson being so young. Plus, who in the hell plans a conference for people who are extremely sensitive to the sun in Las Vegas...in July?!

As a side note to our train adventure, Emerson has decided that his love of train travel does not extend to Thomas the Train. He has recently become interested in television (oi vay - another topic for another time), and one morning PBS aired an episode of Thomas the Train. As soon as the trains started talking, Emerson screamed bloody murder and threw himself into my arms. I immediately turned it off and he was fine again, but I wondered if it was just a fluke. Then, yesterday, a commercial came on for Thomas and within seconds he was screaming again. I guess I can't blame him. A train with giant eyes lolling around its head and a claymation mouth freaks me out too. I'm not sure if he's still on, but when I was kid, Ringo Starr played the host/conductor, which only added to the "high on acid" effect.

I think we'll just stick with the real thing for now.

After the Apocalypse or An Ode to D-Town

When President Obama made his speech about the fate of the American automotive companies, I listened with great interest since I live in Michigan and nearly everyone here is affected by them one way or another. A few minutes into the speech, however, some household duty distracted me and I went into the other room.

Almost immediately, I felt the insistent tug of tiny hands pulling my pant leg. I sighed and followed Emerson back into the living room, assuming he wanted help with some dysfunctional toy or something to eat that he shouldn't be eating. Instead, he dragged me over to the television and then resumed watching the rest of Obama's speech with intense 2-year-old interest. I guess he didn't appreciate my lapse in judgment.

The first time I came to Michigan, it was on a cross-country trip from Salt Lake City where Robbie and I met, to his school in Flint, Michigan. After hours of driving through the steamy, languid southern states (we had gone through Texas and Memphis so I could meet his friends and family) I woke up in Michigan, uncomfortably aware of the temperature drop. Despite the fact that spring was in full effect at the beginning of April in most parts of the country we had been in, winter still had its icy fingers wrapped tightly around Michigan.

After a bleary-eyed conversation with his grandma (who's house we were staying in - he would never let me sleep in Flint), we were off to see one of the great wonders of the state: a coney island. For those not in the know, this is a hybrid of greasy diner and greek restaurant that pop up in various forms throughout the state. In the morning, it means a dingy storefront filled with the smell of pancakes and cheap coffee. At night, they are a haven for 20-somethings to gather and eat off their night of drinking with chili cheese fries and gyros (it's counter-intuitive, but it works). As a fan of breakfast foods - especially cheap breakfast foods - I consider these restaurants to be one of the best features of this fair state.

Anyway, sitting in a coney island for the first time, I looked around at the well-worn faces of the regulars and thought: "This is a state of real, hard-working, down-to-earth people. This is the state for me."

When I recounted this story to a co-worker a couple of years later, she laughed and said, "Yeah, everyone starts out thinking Michigan is full of salt-of-the-earth people. Then you quickly realize they are just dumb-asses."

I admit, I laughed at this comment because by then, Michigan had long ago lost its luster. We lived in a string of metro-Detroit suburbs and realized that we were most definitely not suburban people. The endless, run-down strip malls combined with Michigan's interminably gray weather had me in a deep funk. Not to mention that the reality of Michigan's economy settled in when I went from being a PR person for Utah's biggest non-profit to a secretary for the University of Michigan. And it took me two months to find that job.

Like Tom Jones, I wanted to go home:


(Incidentally, this must be what a music video looks like for a professional karaoke singer.)

Despite my growing disgust, I was determined to defend Detroit and Michigan as a whole against outside detractors. When my best friend came up from Illinois to visit, she was terrified of even driving in the state by herself because she imagined it must all be like the movie "8 Mile." Not only did I have to talk her out of this, I decided I had to take her on a tour of Detroit to show her that it did have many good points.

I told her about my plans on the phone before she came, and she was very alarmed to say the least. "You know, my friend heard that there was a hammer killer going around Detroit beating people to death with a hammer when they got out of their cars to get gas," she told me.

I laughed hysterically. "That is ridiculous! I promise you, I have never heard of a hammer killer in Detroit," I assured her.

I knew our trip to Detroit was doomed when we pulled into a coffee shop on the way there and my friend immediately pointed out a newspaper for sale that had the headline "HAMMER KILLER CAUGHT."

"Well," I stammered, "He was caught wasn't he? So there's nothing to worry about."

The trip only got worse when I let my husband drive. He can navigate himself out of any situation - unless it involves driving in Detroit. Instead of showing her all the artistic and historical high points of the city, we ended up driving in circles through the most desolated neighborhoods imaginable.

Finally, we gave up and took them to swanky Birmingham a 15-minute drive away. My friend's husband, who had fallen asleep during the drive (apparently unaware that his wife was fearing for her life) woke up as we pulled into Birmingham's glittering downtown. He blinked several times and looked around in confusion. "Did we drive to another state?" he asked.

Since this escapade, I have traveled through more of Michigan's wild beauty up North and along the coasts. I have started attending an ecumenical seminary in downtown Detroit, which has introduced me to the strength and diversity of the people who live and minister in the city. And we have moved from the suburbs to Ann Arbor to be closer to our jobs. In Ann Arbor, we finally found our yuppie, hippie-lovin' utopia. I can write several more posts about this city alone, but for now let's just say that if I could move in an ocean, Ann Arbor would be heaven on earth.

All these events combined have led me to a renewed love of Michigan.

Watching the local news coverage after Obama's speech, I could hear the anguish and frustration of people who have been dealing with an economic apocalypse long before it made national headlines. When you walk through downtown Detroit, the crumbling buildings and deserted streets echo the apocalypse feeling.



Yet despite all this, I can't help feeling optimistic and even excited about the state's future and Detroit specifically. I know that coming from an upper middle-class Ann Arborite, that means absolutely nothing, but it's how I feel. Sometimes it takes hitting rock bottom to mobilize the creativity and passion needed to make major changes. And since Detroit hit bottom first, the eyes of the country are turning back to Detroit to see what efforts are in place to rebuild. And there are many efforts - from artists moving in and creating art out of destruction, to locals creating community gardens on vacant lots that not only provide fresh, local food for the surrounding poor neighborhoods, but also help green the city and bring up house prices.

If you are local, check out these two great organizations and get involved:
Georgia Street Community Collective
Michigan Land Bank

If you aren't local and want to see some amazing pictures and read equally incredible stories about Detroit - from packs of wild dogs to artist communities to deserted schools full of supplies left to rot - check out Sweet Juniper.

I don't "wanna go home" anymore - I do feel at home in Michigan now. And even more exciting (this is where I really cheese it up), if I make time to get involved, I can be part of something big. A new way forward. A new definition of growth.

Get Down with Your Bad Self

Home sweet home. We had a lot of fun this weekend, but it's nice to be home again. Emerson's long days of partying finally caught up to him, so he's been passed out cold since we left the airport. There's a lot to write about, but my tired brain can't form coherent thoughts. Instead, here's some video of Emerson's first dance party at the wedding.

The moment the music started, he and his cousins were out on the dance floor. (I'll let Robbie take credit for those moves):



By the end of the night, he didn't have much energy, but his 3-yr-old cousin JoJo certainly did. And he actually has rhythm:

Everything's Bigger in Texas

Right now I am sandwiched between two exhausted little boys in a hotel room in Dallas. This past week has been a blur preparing for this trip and traveling for the first time with all four of us, but so far we're holding up extremely well. Although it is frustrating because we've got a lot of family in town right now for a wedding and family adventures make great blog fodder. Unfortunately, many of the main players would eventually hear about it if I sent these stories into the blogosphere, and I'd rather not make future family reunions...tense.

Suffice it to say that between Robbie's six brothers and sisters, 5 nephews and nieces and our two kids (and all the adults that go with all those kids), we are every wait staff's worst nightmare. Despite the astonishing noise level, it has been a blast to watch Emerson interact with all his cousins and aunts and uncles. He's close in age to three of them, so they run in a pack like tiny wolves. And when they're not running around, his sweet aunts and uncles are always right there to entertain him or lend a hand. At one point, as my 15-year-old sister in law retrieved an escaping child for the 100th time, she sighed and said, "I'm never having kids." Good lord - I don't blame her.

One high point in our trip so far was our momentary brush with fame. We ate at some sort of seafood place tonight and a crew from ESPN came in to film people watching March Madness. Never mind the fact that no one was really watching it (it was karaoke night - and nothing is more entertaining than a 50-year-old overweight man in a Hooters t-shirt crooning "That's Amore.") The crew had our giant table turn to the tv behind us and pretend like we were watching the game that was on. We were instructed to cheer for whoever made the next basket while they filmed and we performed perfectly. It wasn't until after the shot was over that I realized it was Arizona vs. my alma mater University of Utah and I had just cheered on national television for Arizona. I guess it's a good thing that I don't have much school pride - when I was in college, we never won at any sport and yet we spent all this money on new sports equipment while those of us in the journalism program had to bring our own computer paper from home to print our work. Not to mention our fight song is a uninspiring ditty called "I Am Utah Man" that actually involves the word "muss."

But I digress. Tomorrow is the big wedding and the following day we take family pictures. Robbie made us do this during our last visit two years ago and by the end of the session, the poor photographer was on her last nerve. She went from polite requests at the beginning to shouting "You, shut up. You, sit down. You, SMILE!!!" Needless to say, we made a beeline for the closest restaurant afterward and started ordering drinks. This year, Robbie actually planned where we would go drinking ahead of time.

Well, I should force myself to get some sleep now. When you're in Texas, you never know what tomorrow will bring...

What a Difference a Year Makes

Reason #45 why it sucks to have a birthday in December: Your birthday party can always get cancelled by a blizzard.

After suffering for years under the tyranny of a December birthday, I swore I would never, EVER have a baby in that month. And then there was Emerson....

This year we celebrated his big 1st birthday and we attempted to have a party for our Michigan clan on December 16. When we woke up that morning, however, we were greeted with 10-12 inches of blowing snow, a lot of unhappy phone calls to make, and a lot of extra food to eat before going out of town in only three days. I was disappointed after the work and money we put into pulling the party together, but at least Emerson didn't know the difference. We ended up spending the day visiting with friends who lived close by, eating cake, and then watching all the video we had made of Emerson throughout the past year - from the birth (it still makes me wince) to his first bites of solid food.

The video was bittersweet in many ways. It was fun to see him grow and change and do his adorable baby things, but it also brought back memories of how painful and frightening those first few months were. Although we still have struggles - the occassional rude stranger staring at us or our frustration as we try to get him caught up on milestones - but the worst of it is definitely over. In fact, we hardly even think about his vision any more! He is making eye contact, inspecting everything in sight, and generally acting like a normal (albeit extremely goofy) baby. I know his vision will become an issue again when he starts walking, but for now things are pretty darn good.

The most important thing is that Emerson gave me the only birthday present I asked for....he learned to crawl on all fours!!!! He started practicing on the 16th in front of our friends, but then took definitive steps forward the next day. When I saw him do it across the room, I danced around the room with him singing a triumphant "Hail to the Chief!" Now we can start working on walking. he he he

Anyway, we are in Utah now visiting family for the holidays. Emerson got a chance to have his own birthday party at last (it was technically a joint party for me, my sister and Emerson, but we all knew who the real star of the show was). Grandma went all out on the food and decorations as always, including getting a nice big cake for Emerson. He was a little scared of it and unfortunately refused to dig in, but he was more than happy to eat it off my fingers.

This time of year is always filled with birthdays and holidays for our family, but it also tends to be the time of year when emotional events happen. I won't regale you with the whole list, but suffice it to say that the past three have been particularly emotional.

Right before my birthday two years ago, we found out that our first pregnancy was ending in miscarriage. On Christmas Eve a week later, I had just undergone surgery due to the miscarriage and we were in Utah for our annual visit. My parents always work on Christmas Eve, so Robbie and I drove to our old church downtown for the midnight service. Before we even got there, the pain killers had worn off and I was doubled up in agony. We were meeting some friends there, so I told Robbie to go ahead while I tried to pull myself together in the bathroom. I ended up spending most of the time in the cold, tiled room listening to the service over the speakers. I did my best to imagine the beautiful, candle-filled sanctuary as the congregation sang carols and the velvet-voiced minister gave his holiday homily. Then he talked about how Christmas can bring up painful memories as well as happy ones. He ended by asking people to come up and light a candle for all those loved ones they had lost this year, so I imagined Robbie lighting a candle for our baby.

When we got into the car to go home afterward, I asked Robbie if he lit a candle and he said yes. I cried all the way home.

A year later during my birthday, I was in the midst of labor and wondering if I would ever meet this baby. When he was born early the next morning, the significance of the timing wasn't lost on me. We were all so, so grateful to finally have our baby. A few days later, we attended the Christmas Eve service in our home church. The minister stopped his homily to hold up the newborn Emerson for the whole congregation to see, but he slept peacefully and was completely oblivious to the "oohhs" and "aahhhs." When we sang "Silent Night," I looked down at him and cried.

This year during my birthday, I watched a much bigger Emerson try out his new crawling skills and jibber jabber away. A year ago it didn't seem real that I had a son, but even after all this time it still hasn't sunk in! Now it's Christmas Eve again and a thick blanket of snow has prevented us from going to midnight service. Instead, my baby is fast asleep in the next room and I am here getting all sentimental.

It's exciting and a little scary to think where we'll be this time next year and all the changes in store for us. But for now, I'm just grateful for how far we've come.

What happened to November?!!!

Ok, once again I apologize for letting time get away from me and for the lack of pictures. One of the reasons for the long hiatus was MORE computer problems, which also prevented us from doing much picture work lately (strangely, our computer was plagued by viruses soon after installing our new anti-virus software. Coincidence?) Anywho, here's my attempt at catch up and I promise more fun pictures and attempting-to-be-meaningful essays will come after I finish out the school semester.

The month of November started with my maternal grandmother passing away in Utah. She was 92 (would have been 93 today) and had health problems, so it wasn't unexpected....but still, she was one of those people you think will live forever. We had some wonderful memories together, so I was glad to have a chance to fly back there and speak at her funeral. Although it wasn't the greatest circumstances, I was ecstatic to see my family for a week and let them get some intense Emerson time.

More than anything, it was helpful for me to see how my family interacted with him and get some parenting tips from the pros. It's not that I don't have seasoned parents living around me here in Michigan, it's just that when I stay with my family in Utah, they get to see Emerson around the clock. For instance, my mom took control of the whole not-eating-solids situation right away. Using an expert blend of "distract with one hand and shovel it in with the other" techniques, she was able to get amazing amounts of food down him with no tears. In other words, an actual meal!

My mother, bless her, also took Emerson for a couple nights so I could get my first and only good night's rest in over 10 months! The only bad part was that I was so used to waking up constantly, I still woke myself up throughout the night out of habit. But at least each time I work up I could savor that intensely satisfying feeling of going back to sleep, stretched out on a bed I finally had all to myself. Oh, my cramped arms and legs ache just thinking about it....

One of the best parts about our trip was that it flipped a switch in Emerson and all of a sudden he took an intense interest in everything. He has been army crawling for a while now, but hasn't felt the need to explore much beyond getting from one toy to another. But in Utah he was inspecting the pattern of the couches, creeping over to stroke the plant, studying the lines of the wallpaper. When we got home, this new curiosity continued and he is now ALL over the house. (I've started calling him "my little professor" because when he's interested in something, he uses that little pointer finger to poke and prod while he stares at it with this intense, thoughtful look on his face.)

I know this stage causes a lot of headaches for most parents, but since he's behind in milestones, I'm ecstatic to have to keep a close eye on him as he takes off exploring. I actually find myself happy about the fact that he's figuring out how to open cupboards, attempting to stick his fingers in outlets (don't worry, they're covered), pulling dirt out of the potted plants, etc. He's also become obsessed with pulling himself up on everything. It still catches me off guard every time I turn my head for a second and then turn back to see him standing there with a little smirk on his face.

Anyway, after the excitement of the trip wore off, Emerson and I both came down with colds. They started out very minor, just a little ache here or a runny nose there. We were still able to spend Thanksgiving making the rounds with family, eating the most amazing gourmet dinner, and watching Emerson trick people into taking his hands and walking him all over the house (it's a complicated technique, but effective).

But by Friday were both officially sick and miserable. Emerson's never had anything beyond a minor stuffy nose, so seeing him get a fever and become a whining mess was the worst experience. I was also losing my voice just in time to deliver the sermon on Sunday, but luckily Robbie helped me recover it just in time.

Emerson did well during both services and - despite some technical hitches at first - my sermons went well. In fact, we had an amazing experience during the second service after a section on Native American oppression. I was just about to move on to the next topic when one of the congregants yelled out to me that a fox had emerged out of the woods behind our church. We all clustered by the side windows to watch this incredible animal walk toward the sanctuary, then stop and curl up in a ball in the sun while still watching us watching him. I was able to continue the service and incorporate the sighting into my sermon, and the fox continued staring at us as if he were listening intently. The simple gifts of life....

Unfortunately, with all the excitement of the day, Emerson and were going downhill again by the time we got home. He just wanted to nurse or sleep non-stop and we couldn't put him down for even a second. It became exhausting, literally draining for me, and heartbreaking. By Tuesday we finally got him into the doctor and discovered he had his first-ever ear infection! We felt horrible for not suspecting or doing something about it sooner, but he hadn't been pulling at his ears or crying like most babies.

The good news is, the doctor gave him a treatment plan to help him feel better quickly. The bad news is, the non-stop nursing and coddling have undone MONTHS of hard work that only recently got him to the point where we could put him down and he would usually go to sleep by himself, was only getting up twice a night for feedings, and was able to eat at least one meal of solids a day. Now we are back to square one again...heck, we are probably a few steps behind square one. Oi vay.

At least we have his personality back again. And what a personality it is! This child knows all about dramatics and how to use them get what he wants when he wants. He is also stubborn as hell, but I'll save that for an upcoming blog. The other day, I told Robbie as I was struggling with Emerson, "I've never wanted to strangle someone and kiss them at the same time...except with you of course."

And that's just it...he looks and acts just like his father. He goes around with this smirk on his face most of the time like he's up to something or he'll just sit there and laugh to himself with these deep chuckles. A couple of weeks ago, for instance, Robbie was holding him when he started to cry for me. As I held out my arms to take him, his tear-stained face immediately went from agony to his little smirk - as if to say, "suck-ah!!" The child is already a smart-ass and can't even talk!

I could go on about his antics, but since this post is already long and I'm starting to feel like Kathy Lee Gifford telling Cody stories, I'll stop here for now. December is already speeding by too fast and we've been plunged head-first into the holiday season and end of the semester. Not to mention my baby is turning one in less than two weeks! But I promise we'll post more soon.

In the meantime, Happy Holidays to all and to all a stiff drink.

On the Road Again

It’s been another hectic time in our household followed by some monumental computer trouble, so apologies to those who thought we dropped off the face of the earth! For the days we didn’t have a computer, we used our old laptop to read emails, but we couldn’t type anything since several keys weren’t working. Well, we could, but we would sound like a toothless hag (Im missin te etters) or we had to spend twenty minutes cutting and pasting in letters like a cyber ransom note. But we’re back up and running – thanks to Robbie’s technological genius – on our regular laptop with only a couple missing keys- thanks to Emerson’s prying fingers.

Anyway, a couple of weeks ago, we made yet another family trip to Chicago for my seminary Career Assessment. Basically, three days of talking about myself to make sure I’m insane enough to want to be a minister, but not so insane that I’ll have a mental breakdown in the middle of a sermon one Sunday, rip off all my clothes, and jump out of the nearest chapel window. I probably still will, but for now they deemed me ok. At least I think they did.

Since this wasn’t exactly a family fun vacation, we decided to be as frugal as possible and stay in what looked like a cheap but nice Super 8 Motel we found on the internet. When we drove up, we discovered a rotting pink stucco building with halls that smelled like old Indian food and rooms that make you keep your shoes on at all times.

After a long day of taking every psychological, personality, and IQ test known to man, I looked forward to a good night’s rest in preparation for another onslaught the next morning. Instead, we were “serenaded” by our upstairs neighbors at random times throughout the night. And it sounded like some BIG love, let me tell you. Yeeeckk.

The third and gratefully last night we were there, I kept waking up to what I thought was the sound of rain. Finally, I got up to use our closet-sized restroom and discovered the ceiling was leaking. Since we were on the bottom level, I imagined some scene out of a horror movie where the person on the floor above is murdered while running a bath and the water is left to flood onto the floor. I was sure in the middle of my shower, the ceiling would collapse and I would be crushed by the tub containing a bloody, bloated body. When I told the front desk about the leak, however, the woman shrugged and said, “I’ll let Bob know when he gets back from another job.” I guess it must happen a lot.

On the bright side, we were in a suburb that consisted of one giant stripmall, so we could walk to the Jewel or Trader Joe's to stock up on food. I’m not sure which was the better “whitetrash moment”….when we went to Walmart to buy Robbie some shirts (the man was so absorbed in a John Grisham movie marathon on AMC that he forgot to pack any shirts! I’ve heard of people forgetting a toothbrush or a pair of socks – but all his shirts?!)….or if the crowning moment was the next night when Emerson had spit up on all of Robbie’s fancy new shirts, forcing us to walk over to the Jewel to buy grocery store t-shirts, dinner, and mini-bottles of Pina Colada (what can I say – it had been a rough day).

Robbie spent the 8 hours a day I was in session hanging out with Emerson. The first day they made the long trek via several trains to the Museum of Science and Industry in Hyde Park. The other two days they mostly hung out in the hotel or drove around downtown. I had been terrified all month about getting him enough food since he’s been nursing at least every two hours lately and gets very whiny and clingy with me. So, of course, the little bugger went all 8 hours every day without touching his bottles and without eating more than a tiny bit of food. Robbie also said he was not fussy, took naps without eating, and was a generally perfect baby. Apparently he knows who’s got the goods and he knows how to work it.

On an interesting side note about Emerson, one evening we stopped off to get a snack at a fast-food restaurant. The man at the counter took one look at Emerson and asked, “Does he have to wear sunglasses outside?” When we said yes, the man continued on, saying, “My uncle has the same thing he has. He’s a doctor who lives in Mexico, but he has that really white skin and has to wear protection to go out in the sun. Everyone knows who he is because of his color and because he walks around carrying an umbrella.” We were fascinated and spent a couple minutes talking to him. I couldn’t stop thinking about what an interesting image that man must be walking down the streets of a Mexican town with his dark glasses and umbrella. I wish I could meet him….

After we got home from this trip, we had a day and a half to do laundry and repack before heading “Up North” – as the Michiganders say. We had purchased a weekend at a cabin on a private lake during our church auction several months ago and hadn’t gotten around to picking the date until recently. After several weeks of hot weather, we of course picked the weekend it temporarily dipped down into the fifties. This put a major damper on our boating and swimming plans, but the lake was beautiful. We spent most of the weekend taking advantage of their amazing DVD collection by watching two seasons of The Office (ahh the great outdoors), took turns taking the kayak for a spin around the lake, and roasted marshmallows under a sky thick with stars.

I think the dogs had the best time of all, though. Kenya spent most of time eating sand for some unknown reason (that made for some interesting times scooping the litter box later on) and Abbey decided to go bobbing for acorns in the lake. When she retrieved all the ones in the shallows, I waded out a few feet and pulled them off the bottom for her. Then she would swim as fast as her tiny legs could move, pluck them out of my outstretched hand, and deposit them in a little pile on the shore. They are demented dogs, but they had fun.

So now life is back to its regular hectic pace here at home. Somehow the month of September is almost gone and we have October to look forward to – the only month during the year that I truly, deeply love living in Michigan. But I’ll save that sappy essay for another day.

Have Baby, Will Travel

Last week, Robbie had to travel to Boston on business, so Emerson and I got to tag along. We quickly realized this had come at the perfect time because our days of easy traveling are coming to an end. The week before, we spent a couple days “Up North” at the lake home of some relatives. I think all that time driving in the car and then being passed around from person to person finally motivated Emerson to move, because the moment we got home and set him on the floor, he was off. He’s known how to roll for some time now, but suddenly he decided to use this skill to explore. If we took our eyes off him for a minute, we’d find him playing with the houseplant or half stuck under the couch. And when he wasn’t busy rolling, he was using his voice to imitate cawing peacocks or incensed monkeys.

Yes, Emerson has reached a new stage I like to call “twist and shout.” My sweet, relatively quiet baby that we could take to fancy sushi restaurants or throw on a plane with little anxiety is rapidly disappearing. But overall, we are still fairly lucky considering what we put him through. Case in point - traveling in Boston during a heat wave.

Boston is an amazing town to visit no matter who you are, but it was especially exciting for me as a Unitarian Universalist ministry student. Not only is Boston the denomination’s headquarters and home to plenty of churches, it’s filled with UU history – from leaders of the Revolution like Thomas Jefferson to Mr. Ralph Waldo Emerson himself. So after Robbie headed off to work and Emerson took a good nap at the hotel, I decided it would be fitting to start my sightseeing at the UU headquarters on historic Beacon Hill.

I strapped Emerson to me in a sling and began the long trek from hotel shuttle to commuter train to subway system and then through various lines to get Beacon Hill. As I emerged onto Boston Common, the 90-something degree heat and having a 16lb pound baby strapped to my body with several yards of fabric hit me immediately. Apparently it hit Emerson too because within seconds his little head bobbed forward and his body went limp with sleep.

I passed by a man on a bench who took one look at Emerson in the sling and called out “Ma’am, does that thing hurt the baby?” Several smart-ass comments came to mind, but instead I shook my head and pointed out that he was comfortable enough to be asleep. Apparently people make dumb comments about all sorts of things, not just albinism.

I proceeded to walk up and down the hill, looking at the signs and flags hanging from the beautiful brownstone buildings, but I didn’t see any sign of the UUA. Finally I called information for the address and discovered it was right where I had gotten off the subway. In fact, I had passed it about three times already! By the time I hoofed it back up there and realized it did in fact have a small golden plaque that read Unitarian Universalist Association, it was already closed for the day.

I spent the rest of the afternoon playing with Emerson in the Frog Pond in Boston Common, wandering around the Public Gardens, and visiting the various historic points. Robbie met up with us for dinner at a Thai restaurant, where the baby showed off his new busy-body skills by continuously grabbing at everything in sight. After eating, we decided that the commuter train station looked close enough to the hotel to walk back – at least that’s the way it appeared on the map. So we blew off trying to get back to the station in time for the last hotel shuttle and instead wandered around Beacon Hill some more.

Later, we arrived at the commuter station mere minutes after the last shuttle. We both felt confident as we walked across the enormous empty parking lot and onto the main street. But as we walked, we quickly realized we were in an industrial area that didn’t seem so familiar. With no signs of commercial “civilization” in sight, we were forced to keep walking….and walking….and walking. The road was pitch black except the neon signs of scattered industrial buildings, semi trucks rolled past every few minutes, and in between the buildings were long stretches of overgrown fields.

Luckily Emerson was blissfully unaware of our rising panic since he has passed out on Robbie’s shoulder long before. It was an eerie place – too remote for wandering criminals but I imagined a good place to run into a crazy hobo. This thought was incredibly amusing and yet just scary enough that when a small animal rustled in the field that we were walking by, I actually shrieked in terror.

Finally, we walked into a commercial area and Robbie recognized one of the restaurants as the one he had eaten lunch at earlier that day with his coworkers. Instead of following our gut instinct to head left, he decided he had driven to the restaurant from the other direction, so we turned right. However, within a few minutes, we were back into the industrial zone. Before getting ourselves into worse trouble, we decided to stop at a hotel and call for a cab.

Right before the cab arrived, Robbie bought a bottle of water with what little cash we had left. The woman at the front desk had assured him that if the cab didn’t take credit cards, there was an ATM we could stop at on the way.

When we got in and explained to the driver what had happened, we quickly learned two things: 1) We had actually walked the right direction up until we turned right instead of left and 2) We were not all that far from our hotel. Later, we also learned that the station on the map that we had been referencing was in fact very close – it was just a different station that had been closed down for several years.

Anyway, of course this cab didn’t take credit cards, so the driver pulled into an ATM in the strip mall and Robbie jumped out. As we waited, he told me stories about his long work hours, his horrible case of sciatica, and the piece of gray, frostbitten meat he found in the station freezer and was currently using as an ice pack. I sympathized the best I could while simultaneously wondering what health codes applied to unthawing meat in taxi cabs and why Robbie was taking so long getting the money.

My worst fears were realized when Robbie returned empty-handed and explained that the card had an error. There was another machine in the hotel lobby, so we drove the rest of the way and I waited in the cab as Robbie ran in again. Another long wait and another bizarre conversation passed before he returned empty-handed. The money was in the bank, but for some reason none of our cards would work.

We desperately scrapped together all the small bills and loose change we could find and miraculously found the exact amount of the fare, no more no less. We apologized profusely to the driver for not having enough for a tip and he was very good-natured about it. I sent lots of best wishes his way to fix his sciatica. Or at least for him to find a real ice pack.

We finally stumbled into our hotel room, exhausted, embarrassed and shaken up by the card problem. But our little Emerson was wide awake again and as energetic and happy as we were beat. I flopped down on the bed and played airplane with him above my head, grateful for his squeals of laughter after our bizarre night. Then, as if perfectly timed, he smiled down at me and let loose a stream of spit-up right into my face and hair – and wide-open mouth.

The next day, we did find out the bank cards had been fixed, so we weren’t forced to beg on the streets as stranded travelers. And we did eventually get to see the UUA headquarters - lingering as long as possible in the air-conditioned book store. We also played in the fountains and lay out in the grass of Harvard Yard, ate Italian food in the North End, ordered fresh seafood in America’s oldest restaurant, and of course spent an entire day dragging Emerson through the heat so we could see the historic sites on the "Freedom Trail."

But my favorite highlights of the trip were listening to little kids talking with heavy Boston accents (on par with a kid who looked like a mini Tony Soprano speaking Italian in the North End) and taking a water taxi through the harbor to the airport. Through it all, Emerson remained mostly patient and good-natured, and we spent a lot of time and kisses thanking him for it.