Wednesday, December 16, 2009

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 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
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Wednesday, December 2, 2009

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.

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Tuesday, December 1, 2009

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 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.
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Monday, November 30, 2009

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!!!"


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.
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Monday, November 16, 2009

School Daze.... or "An Extremely Detailed Post Only Suitable for the Most Committed of Readers"

This morning I bent over Emerson's sleeping bulk and whispered, "Emerson, we need to get up early this morning." One puffy eye slid open, so I continued. "Guess where we are going? Preschool!!" He was curious but, as usual, took his time to push away the deep weight of sleep. Fionn, meanwhile, shot up and began to crawl around with his characteristic morning energy.

All the way downstairs I sung our new theme song, "Preschool Musical" compliments of Sesame Street. Today we were visiting what will soon be Emerson's new preschool class, in the hopes that a couple hours of introduction will ward off a nuclear meltdown when I drop him off the first day. Considering that lately I can't even go upstairs without causing him to tear his hair out and scream at the top of his lungs, "MAAAAAAAAAMAAAAAA!!!" this seems doubtful. The teacher assured me that if he had several days of tears, he would not be the first, so I'm just praying he will at least settle down quickly.

A few weeks ago, the whole family attended the preschool open house. Robbie doesn't get to be part of school, so the boys and I enjoyed showing him our routines and introducing him to the various teachers. Then we took a tour of the building and learned that the entire school is devoted to Early Intervention and Head Start (which is impressive considering how big it is). Emerson began attending the EI program once a week as an infant since he had a medical diagnosis, then moved on to two times a week in the toddler program, and now half days for three years in the EI preschool class.

Even though we've been attending for three years already, I learned a lot on our tour. There are several gyms, music rooms and a little library where they check out books once a week. Each classroom has a main teacher, two or three parapros, a physical therapist, speech therapist and an occupational therapist. There is also a bathroom in each classroom where the teachers help to potty train them and brush their teeth. They are served both breakfast and lunch (although being vegetarians I will have to pack his meals. But still - someone ELSE has to make him eat it!) We also learned we will get report cards and have to attend parent-teachers' conference.

But the bit that nearly dropped me to the floor - a bus will pull up to our front door to take him to and from school each day! I guess I had imagined preschool to be like the toddler program except a little longer. Instead, I'm realizing we are knee deep in the school years already.

I have to admit I'm a heartless bitch because none of this makes me wistful for Emerson to be a baby again. I don't tear up at the thought of being away from him for hours a day. After being in charge of his every movement 24 hours a day, seven days a week for most of the last few years, the idea that someone else will help me raise him is better than winning the lottery! The only thing that makes me choke up a bit is the image of this tiny person sitting on a giant school bus. Not enough to keep him from riding it mind you, but it's definitely something we need to ease into.

When we arrived for today's warm-up session, Emerson bounded into school with excitement and energy. That is, until we went to his new classroom instead of our usual room. For the first few minutes of group time he pouted and kicked his legs, but by the time we sung "Mat Man," he was starting to thaw.

The idea that Emerson is in a class only with other special needs kids has been a touchy subject in our house, but seeing the classroom in action at least assured me if not Robbie that it is the right place for him. The kids in the class have varying degrees of special needs, most of which aren't obvious to the casual observer, so I think there is plenty Emerson can learn from them. I also love that the classroom makeup looks straight out of a Benetton ad, with every ethnicity (including Pacific Islander) represented. Gotta love Ann Arbor.

During our visit, I made several mental notes about things to bring up at the IEP meeting this Friday (i.e. he needs to sit at the front so he can see, he needs a parapro to keep an eye on him during outside time so he doesn't tumble off a wayward step, etc.) and I made notes for myself (i.e. always send a thick coat, buy a bento box for lunch, etc.). So now I'm feeling much more prepared and ready to face the adventures ahead.

In the meantime, I informed all the teachers that Robbie was going to make his famous chocolate chip cookies for our IEP meeting, so hopefully that will win us some brownie points as we enter into negotiations. I expect the meeting to go smoothly, but there are a couple of issues (like getting fluorescent bulb jackets for all the classroom lights to cut down on eye strain) that will take some hashing out.

Now I just need to inform Robbie that he is going to bake his famous chocolate chip cookies...
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Tuesday, November 10, 2009

copyright Mattson Photography
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Bring Out Your Crazies

The other day we were in the grocery store - Robbie had Fionn strapped to his chest and I had Emerson in his cart. Robbie, of course, spotted someone we knew in checkout and wandered over to talk to them while I helped some frazzled woman track down canned chilies.

Apparently while Robbie was talking to our friends, some strange older woman interrupted him to start asking questions about Fionn's coloring. As is often the case, as soon as one person dares to be nosy, it opens to floodgates for everyone else in earshot. Robbie tried to make his way back to me, but this woman and a store worker wandered right along with him. I inwardly groaned as I saw them come around the end of the aisle - the woman was staring at Fionn by now and muttering, "That's going to be interesting watching them grow up." Then she spotted Emerson in my cart and her eyes got even wider. We fielded more questions from her and she did more muttering. "It's definitely going to be interesting. Veeeery interesting."

As she left, the store worker started in. When he asked if we have to buy a lot of sunscreen, I took the opportunity. "We sure do. In fact, that reminds me - we are all out. Thanks!" And off we went to the sunscreen aisle (we were in fact out).

When we left the store, I started complaining about the crazies, especially the woman. "Why the hell does she need to tell us it's going to be interesting?' I should have said, 'In case you haven't noticed, we're already three years and two kids into it. We KNOW it's interesting!"

Robbie snorted. "No, what we should have said is, 'Yeah, it will be interesting. I bet all kinds of crazy people are going to interrupt us to ask stupid questions. What do you think we should do if that happens?'"

Ah, hindsight.
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Friday, November 6, 2009

Our Month in Pictures

For those of you who don't wish to torture yourselves by going through the hundreds of new pictures we just posted on Flikr, here is a slightly abridged (albeit long enough to still be embarrassing) photo post/catch up post:

The best time of year in Michigan is Fall. And the best activity in Fall is the Cider Mill. You basically gorge yourself on homemade cider and doughnuts, pick a few apples or pumpkins yourself to feel more wholesome, and try not to spend all your money on the myriad of activities meant to lure in families with young children. This year, we took along our friend's baby girl, Jane, so they could catch up on housework. I have to admit, it was fun pretending we had twins plus a toddler - although I was disappointed at the lack of reaction among the general public. Apparently, having two kids with white hair garners a lot more attention than having twins and a toddler two years apart. Hmm.

I have to say, seeing Robbie with Jane made my ovaries ache. Sigh.

Emerson quickly took to the idea of thumping pumpkins to test how good they are. So we had to pat ALL of them.

The strangest sight was seeing them "stock" the pumpkin patch. Yes - we drove on a wagon out to this field that used to be a pumpkin patch, but had long ago been picked over. As we are staring at the "planted" pumpkins, a truck pulls up and workers start unloading more pumpkins. So people crowd around to get one, seemingly unconcerned with the absurdity of this ruse. Technically our pumpkin was no different, but just on principle I refused to get one directly off the truck.

Next stop was the farm petting zoo, full of animals that had overdosed on prozac and looked long gone to the world. The woman at the front refused to charge us for the two babies since she assumed only the toddler would enjoy it.

She had it backwards.

Emerson fails to grasp the concept of sticking your head through the wooden display for a picture.

He also fails to understand why we are making him stand on a large haystack.

A few weeks ago, Emerson was in a family wedding in his first-ever ring bearer gig. I was the officiant, but let me tell you - being the mom of the ring bearer was much more stressful. The first step was getting fitted for his tux - and discovering the magic of mirrors.

Incidentally, they took every single measurement possible, then turned and asked me, "What size does he wear?" When I answered 3T, they turned and pulled out a 3T tux, saying, "Here you go. We don't rent this one, so you need to buy it for $70." My initial reaction was, "Why the hell did you make him sit through all the measurements if it's based on standard sizing?" My second thought was, "Screw you Men's Wearhouse, I'm buying this tux second hand." The next day I found the exact same one at a resell shop complete with vest and tie for $20. SO there.

My handsome men before the wedding rehearsal. These rare moments when I can force them into complementary sweater vests almost make it ok that I don't have a daughter. Almost.

Emerson the wedding rehearsal the night before, so we came prepared with gummy bears to bribe him down the aisle. He ate all 75+ of them in the hour before the wedding started. Then we had to hide the empty bucket that he refused to relinquish under the ring pillow.

The plan was for Emerson to hold the flower girl's hand and be dragged down the aisle. Unfortunately, we forgot to take into account her need to use both hands to throw flower petals as she walked. So Robbie sent him down on his own. He walked a few steps, looked around in confusion at everyone staring at him, Robbie gently pushed him down the aisle a few more feet, and the cycle repeated. Needless to say, it took a while to get him all the way down. Ah, memories.

Next to his dapper brother, Fionn looks a little like the crazy, drunk uncle who is always embarrassing himself at family parties.

During dinner, cousin Ricky leans over to taunt Emerson, "Hey, can you make this face?"

I nearly reply, "Don't challenge Emerson to a crazy eye contest because you will go DOWN" But then I think better of it.

(Yes, I'm aware that I'm a horrible person.)

Fionn literally danced his socks off.

Watching the mother-son dance, I had one of those stereotypical moments of tearing up with the realization that someday I'll be taking the dance floor with my own sons. Sigh.

The ever-cool man, Emerson starts scouting for the best after-parties.

At the end of the month, we had to make a mini trip to Chicago so I could complete my interview with the Regional Subcommittee on Candidacy. This is a major hurdle where they decide if you have enough of what it takes to be a minister and recommend that you either continue on or give up now. But they state it a lot better than that. I did ok and passed the interview, but a combination of having a sick stomach (no I'm not pregnant, so don't email me all in a tizzy) and having some recent doubts about my ministry path made this a challenging trip. With all this weighing heavy on my mind (and stomach) the morning of the interview, we decide the best medicine would be to eat greasy diner food in Hyde Park.

Hyde Park from a 3-year-old's perspective.

After lunch, we spent the afternoon exploring the Museum of Science and Industry. I prayed that my sour stomach would clear up before my 5pm interview. It did not.

Emerson, being Emerson, loved the endless ramps and the water ball pit.

Fionn, being Fionn, enjoyed just about anything that involved getting out of the sling.

And I finally got to live out my dreams of going to space.

Emerson's first trick-or-treating experience was the downtown Halloween parade the day before. By the time we walked down there, he was passed out - but I was determined to get some trick-or-treating in before the parade ended in an hour. So I shook my kid awake, bribed him with the promise of candy and dragged all three of us through the rain to get it done. My violent illness and squirming kids be damned - we were going to have FUN! And despite my insane drive to force my children into enjoying themselves, they actually did have fun. The moment people started putting candy into his bucket, Emerson was wide awake and babbling an excited stream of chatter that included the word "wow" and "candy" several times. It was priceless.

Fionn's First Birthday/Halloween Party. The number of babies in attendance and resulting chaos was a sight to be seen.

The moment he saw the cupcake, he burst into tears because we weren't giving it to him fast enough. Needless to say, he did not share his brother's aversion to digging in and getting messy.

Notice the single tear for dramatic effect.

Six teeth and a tiny stomach notwithstanding, Fionn devours every last crumb.

Despite an entire day of partying, we still have a night of trick-or-treating ahead of us. Emerson is thrilled that the generosity continues, although I will spend the next few days trying to convince him that we can't go outside every night and collect candy from our neighbors.

After nearly two hours of trick-or-treating, Emerson falls into a deep coma.
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Picture Schedules

I mentioned several posts ago that I was going to post the new picture schedule I created for Emerson - so here I am finally getting to it! These are often used to help kids who have trouble making transitions between activities, or for kids like Emerson who don't necessarily have trouble with transitions, but who dislike routines and fight it every step of the way. For instance, trying to apply sunscreen every morning is a lot like trying to wrestle a squealing, greased pig. (Or something like that - I'm not up on my farm similes.) These pictures make it more of a game to get through it...and letting him watch cartoons during the process doesn't hurt either. But more on that later.

I created this format using a combination of things I've seen, but if you do a Google image search for picture schedules, you'll get many more ideas. The pictures I used can be printed for free from a huge picture database on:

Here is his morning schedule (the one we use the most often since the night often just...happens...lately).

When it's time for a new activity, we move it to the front (I purchased these awesome velcro dots to make this work) and I repeat what the picture stands for. I.E. "Now it's time for sunscreen!" When the activity is finished, he gets to remove the picture and put it in the pocket folder (see last image).

Here is our night schedule:

This folder hasn't been used as much since I often forget to pull it out, but it's full of his favorite activities. I put two dots on the front so he can either pick between two favorite activities as a reward for something done well, or we can use it for the "First, then" method. This is when you take a hated activity (say...sunscreen) and put it on the first dot. Then the preferred activity (say bubbles or bike riding) goes on the second dot. The idea is to explain, "First we will do sunscreen, then bubbles." Sometimes this helps. Sometimes it doesn't.

Putting the picture in the folder seems like a lame reward, but kids get excited about strange things. The one thing I will say is that the schedules will lose their novelty for both parents and kids quickly. I find myself using them for a few days, then not for a few, then back to using them. It depends on how much your child craves strict routine (we still generally follow the routine, we just don't always use the pictures to help us, but some kids get very upset if things are not just so every day). I'm also inherently lazy.

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Back Online

After a trip, a mystery illness, a wedding, a birthday party, some major life decisions and a computer virus that completely shut me down, I'm FINALLY back to the keyboard. Hopefully today I will get a chance to finish one of the many half-written posts in my draft box, but in the meantime, I uploaded all our new pictures from the past couple months in Flikr if you're so inclined.
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Friday, October 16, 2009

Deep Breaths

Emerson at Rosh Hashanah

This month has been building momentum, like a frothing wave curling up behind me. The giant wall of water paused long enough for me to realize that I was going to drown. And then it came crashing down full force.

Back in my brief newspaper days, I earned the title of my generation's Andy Rooney. I didn't dress in bad brown suits or begin my columns with, "Have you ever wondered what the deal is with (fill in the blank)?" but I might as well have. I was and still am a champion complainer. A Debbie Downer. A glass half-empty kind of gal. I even preached once on the positive power of negative thinking - with mixed results.

All this is to say, I am going to do my best not to detail all my complaints. It's been a ....full few weeks. I've been dealing with births, death, weddings and a sermon. I've watched with excitement as Emerson achieved new milestones like giving up the bottle for good and making progress in speech therapy. I've also resisted the urge to smash his precious noggin as we battle over potty training and his epic temper tantrums. I've been trying to figure out where the hell I am as a mother and where the hell I'm going as a minister.

The other day, I had a dream that I was given a package of cigarettes and for some reason I had to smoke them all in a short period of time. I HATE anything even remotely connected with smoking. I will readily admit I'm the type that exaggerates my coughs and sends death lasers out of my eyes every time I pass a smoker. I have never tried smoking- the closest I came was after a night of sipping wine when I decided to play the empowered female and smoke a cigar with a group of men. Except I couldn't even get the nerve to pull the smoke into my mouth much less inhale. (insert Clinton joke here)

Despite all this, I have to admit that the act of sucking in and then exhaling deep billows of smoke was immensely satisfying. I luxuriated in the motions of it and felt completely relaxed despite my imaginary deadline to finish them all quickly. After I woke up from this dream, I spent the rest of the morning trying to figure out why this came to mind. Somewhere in the middle of a walk through the neighborhood in a failed attempt to get the boys to nap, I realized it was the deep breathing that I found so relaxing. I tried it, sucking in the brisk Fall air and then exhaling slowly. Obviously it only created a ghostly steam instead of the dark plumes of smoke in my dream, but it was still satisfying.

In all my attempts to stay afloat, the easiest solution was right there - just keep breathing. Deeply. It's sad that as a minister in training I so often forget the most universal of relaxation techniques, but at least my subconscious and Philip Morris teamed up to remind me.

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