The Biner Boys

I Moved!!!

2010-03-29T11:05:00.003-04:00

I finally made the change, so please visit me at:

http://www.allbino.blogspot.com/

This blog will still exist, but I will no longer update it.

We're Embracing

2010-03-25T13:46:00.005-04:00

I am deep in the trenches of parenthood - up to my elbows in literal and figurative muck. Just today we finally caught up on our laundry after a simultaneous, family-wide bout with the stomach flu last week that soaked everything. It set in on St. Patrick’s Day, so we got to relieve our college days – the vomiting part, not the drinking part.

We are committed to getting Emerson fully potty-trained this month, so we spend all our time rushing him to the little potty and begging him not to touch anything in public bathrooms. Our goal for Fionn is to get him to sleep in the crib next to our bed instead of being in our bed, so nighttime has been a battlefield in and of itself. He also recently learned the word “NO!!” so that’s now his answer to everything.

There are times when both sides lay down arms and peace reigns once again. Emerson is making huge strides in speech therapy and got a positive progress report from school. Fionn is staying on track with his milestones so far and is a master of flirting with women of all ages. Every once in a while the two of them take a break from pushing each other and actually hug. It usually only last a few seconds before Fionn releases his war cry and throws Emerson to the ground, but we’ll take what we can get.

My children are many things, but they are never boring. Fionn keeps up constantly moving and Emerson keeps us constantly guessing.

A couple of weeks ago during Emerson's private speech therapy, the therapist pulled out a doll house and a family of dolls. Emerson has become fascinated by pretend play, so I wasn't surprised when he snatched up the mom and dad right away. I was surprised, however, when he mashed their faces and bodies together in an apparent display of affection. At first I beamed with pride that my son was so loving.

He had been doing this a lot lately...Thomas the Train needs a drink and blanket...Elmo puts the fireman on his lap for a cuddle (why does that seem dirty in print?) And now this.

“Aww...are mommy and daddy hugging?”

When mommy and daddy wouldn’t stop “hugging,” I started to squirm. The therapist tried to convince him that mommy needed to go up the stairs or that daddy wanted to sit at the dinner table, but he ignored her.

We both started giggling uncomfortably. “I guess mommy and daddy are busy...embracing,” she smirked.

She decided to forcibly take daddy out of his hand and replace him with the baby, but Emerson screamed in protest. As soon as daddy was returned, the couple was going at it again.

My mind started racing...Robbie and I weren’t that physical in front of the kids. Had PBS gone x-rated and I failed to notice? Where was my friend who’s a sex therapist when I need her?!”

I was just about to tell mommy and daddy to get a room already when the therapist took pity on me and removed the doll house altogether.

“Let’s play with balls instead.”

*********************************************************

Yesterday, our Vision Teacher came to see Fionn for his monthly home visit. As he was busy playing with the toys, she and I got to talking about Emerson’s progress. She visits him once a month at school and once at home, so she often provides me with useful information about what’s going on at school.

She confirmed that he’s making a lot of progress and that the teachers are anxious to accommodate his needs. For instance, during group time he sits next to the teacher and/or they make him his own copy of the picture they’re working with. As you can see in the recent pictures I’ve posted, we got him specialized, rose-tinted eyeglasses that cut down on glare and the harshness of fluorescent lights. Both his school and vision teachers say that it’s helping his ability to make eye contact and look at pictures.

The VT mentioned that teaching him to use the white cane has also been great. We’ve talked about this in the past few weeks, but for some reason I suddenly felt a little melancholy. Partly because it’s strange to think he’s learning something so important when I’m not around and I haven’t even seen him do it yet. And partly because the image of him walking around with a cane is a vivid, inescapable reminder of his low vision.

The teacher mentioned that during next week’s home visit, she would bring his cane from school so we could practice with it in our neighborhood. I agreed that it would be helpful for him to expand his practice environment and helpful for me to know what the cane was all about. The melancholy started to dissipate.

Then she talked about how the teachers at his school let him lead the class with his cane whenever they move from one room to the next.

“He loves to explore things with his cane,” she gushed. “And it’s hilarious to watch because all the kids are holding onto a rope, so wherever Emerson goes, they all go. From far away, all you can see is this line of preschoolers zig zagging drunkenly down the hallway!”

I burst out laughing and the melancholy was gone. Things aren’t perfect...most days it feels like we’re losing the war...but the unexpected keeps me going.

As Luke put it, Can the blind lead the blind? Shall they not both fall into the ditch?

Probably. But we’ll have fun along the way.

Bowling with Biners

2010-03-10T11:14:00.010-05:00

A few weeks ago, we went to our first-ever NOAH Bowl-A-Thon with the boys. This is NOAH's big fundraiser held across the country every year, so we were excited to finally connect with other NOAH families in Michigan. We were a little apprehensive about the idea of trying to entertain (read: maintain control over) the boys in a crowded bowling alley for that long, and we had no illusions that they would be the least bit interested in the actual game.

But we were pleasantly surprised.

Emerson actually took to the concept enthusiastically and willingly - marching out to the lane during his turn and allowing us to help him throw the ball. Fionn watched this all with great interest, playing the dual role of cheerleader and troublemaker. He was up and down stairs, grabbing at the balls as they shot out of the machine, trying to pull balls down from the shelves, attempting to run out in the middle of the lanes - anything he could think of that seemed remotely dangerous.

He did, however, take the game very seriously. Every once in a while he would find an empty lane, pause at the line, narrow his eyes in concentration, and then suddenly - and with much gusto - swing his right arm around like a limp, useless weight. Try to imagine what zombies would look like if they took up bowling and you'll get the picture.

Of course my three-year-old out bowled me during the game, but my goal was to meet other NOAH families and ensure the boys left with all 10 fingers still attached. I'm happy to report both goals were met.

We expected to meet maybe two other families with NOAH kids and maybe a couple NOAH adults, but instead they were several families. There was even one other family with two children with albinism, which I really wasn't expecting. For a couple of hours, having kids with albinism didn't seem unusual or remarkable in any way. We did still get a few "Are they twins?" comments from other families, but at least no "Where did their hair come from?" or "What color eyes do they have?" No stares or whispers or stupid comments. It was bliss.

All the kids from NOAH families.

All the OCA kids.

Fionn with Uncle Frankie, a friend who generously supported NOAH by bowling on our team.

We were already planning on attending our first big NOAH conference in D.C. this summer, but our bowl-a-thon experience made us even more excited about how much we would get out of the trip. Not to mention we now have NOAH people right in our own backyard that we can connect with on a regular basis.

I'm sure there's some profound bowling metaphor to be made here, but I'll spare us all. (Dammit, I still managed to pun.) Instead, I'm off to honor my sons' new-found passion for bowling by making them matching purple jumpsuits and hairnets. The Biners abide.

A Snowy Day

2010-03-07T20:35:00.009-05:00

First, I have to say that I am so grateful for all the name suggestions everyone offered this past month. I proved my theory that while I may not be exceptionally witty, I surrounded myself with people who are.

I haven't been able to bring myself to pick just one yet, but I promise I will be cleaning someone's house soon enough.

In the meantime, I wanted to share some pictures from our winter adventure. We spent 30 minutes getting the boys bundled up in winter gear, 5 minutes trying to convince Emerson to get on the sled (without success), and 10 minutes pulling Fionn around on the sled before we collectively realized we were freezing our butts off.

We were making Valentine's earlier that morning and Emerson decided he wanted to carry around one of the paper hearts all day. It's a miracle it survived our sledding adventure.

Suggestions Please!

2010-02-17T12:38:00.006-05:00

So every once in a while I have to change something on the blog...just because I can I suppose. What's really bugging me right now is the title and/or the domain name. It's hard to explain to people that Biner is not our last name but actually a strange nickname derived from my husband's attempt to make "albino" less offensive. I guess the humorous companion to the nickname people with albinism have for normally pigmented people: pigmentos.

I want a name that reflects the new attitude I'm trying to adopt: not the pessimist of the past or the unrealistic Pollyanna, but the wanna-be-hip mama that takes special needs in stride. The kind of outlook that kicks ass and takes names. (And to show you how far I've got to go - I had to google that phrase to make sure I had it right. Thank you urban dictionary!)

The best I can come up with so far is "Shera and the Short Bus." But this name only makes sense to girls who were born in the 80's and it's not entirely accurate since Emerson actually takes a huge bus to preschool. So hopefully you can see my dilemma and offer some more creative suggestions.

I'm happy to offer a reward to the person with the best idea. Let's see what my skills are...if you are local, I can babysit or clean your house. And if you're not local, I can edit term papers or help you craft a sermon. (I said I had skills - I didn't say they were useful.)

"That" Kid

2010-02-10T12:37:00.005-05:00

The boys try out the dog bed.

A couple days ago, Emerson came home from preschool in a Red Wings Jersey. This was a "spare" shirt I sent with him on the first day of school in case of accidents, so I went fishing for the inevitable note in his backpack. Sure enough, his teacher had enclosed a short letter explaining that after using the toilet, Emerson "was doing some spinning" before flushing, but lost his balance and fell in. Hence a soaked shirt.

Robbie and I exchanged looks and then burst out laughing - not because of the story itself, but because his teacher was so matter-of-fact about him spinning before flushing the toilet. Whether it be randomly spinning before flushing, licking his knees, or walking around the house with a plastic tub on his head - it doesn't take long to get used to his oddities.

Emerson's favorite activity - looking at his reflection in the school garbage can.

Robbie and I exchange a lot of looks that say "oh god, he's that kid." By that we mean the kid that is playing dragons and aliens by himself on a corner of the playground while other kids play basketball or tag. The kid that whispers strange things under his breath or wears the same outfit for several days in a row.

Don't get me wrong - Robbie and I both have plenty of childhood pictures that attest to our own history of dorkiness. And frankly that kid is often the one that grows up to be a brilliant artist or billionaire CEO, so it isn't necessarily bad. But as parents, of course we want his social life to be as painless as possible.

Despite the jokes and our underlying fears, I am starting to wonder if our theory is even right. The more often I see Emerson is social situations, the more I see a future class clown. He does undoubtedly weird things, especially when he's under pressure to socialize (i.e. when we introduce him to someone for the first time, instead of just saying "hi," he might make a goofy face and then do a dramatic stunt fall), but I also see him feeding off the attention.

It's hard to know what social pecking order he'll eventually fall into, but one thing is abundantly clear: his view of the world is unique. I wish I could see what he sees or hear the thoughts he's thinking. As one of his teachers once said during a PT session, "Emerson, I love you. I just never know what you're going to do next!"

My little Fionn, on the other hand, has very clear social skills. He mixes his unruly white curls and cherubic cheeks with a sly smile that can get him pretty much anything he wants. And if he doesn't get what he wants - watch out! He's charming, dramatic and conniving all at once.

Future politician?

Step Two: Don't Wallow in Self-Pity

2010-01-19T18:50:00.004-05:00

A couple of months ago, the boys and I were taking advantage of an unseasonably warm November day by hanging out in our neighborhood park. When we arrived, we found a group of preschoolers collecting the still-abundant leaves into piles and then shrieking as they catapulted into them. I was suddenly overwhelmed by Norman Rockwell-esque warm fuzzies watching them play and thinking about how lucky we are to live in a friendly neighborhood full of kids the same ages as our boys.

However, I was quickly brought back to reality when I realized that Emerson had no intentions of joining the crowd - instead heading toward the empty climbing structure with faithful Fionn following behind. I tried to remind myself that between his shyness, poor vision, and difficulty communicating, socializing was a lot of work for him. But those things would change with time...hopefully.

Later, we walked home with another family who live on our street. They have two boys as well – the dimpled, precocious, 5-year-old Henry and the exuberant, fearless, three-year-old Oliver. As usual, Henry tried fruitlessly to engage Emerson in conversation as he bumped along with Fionn in the wagon. He finally gave up just as we reached our street and refocused his attention on the yellow house we were passing.

“Do you know who lives there?” he asked me.

“Sure, there is Sam, who is close to your age, and Zach, who is close to Oliver’s age, and baby Layla.”

“Sam is my friend, we play a lot. Does Emerson ever play with Zach?”

“No, he hasn’t yet.”

“Why?”

I sighed a little as I thought of a way to explain to a 5-year-old what was already weighing heavily on my mind. My mind shot back to the definitions of Apraxia I had read recently.

“He has a hard time talking to people, so that makes him a little shy. But he will get better,” I finally answered.

His brow furrowed as he thought deeply about this. “Why does he have a hard time talking to people? Is there something wrong with his voice?”

I smiled. Sometimes Henry reminds me of the kind of plucky boys you find in British adventure stories and I just want to hug him for it.

“No, it’s just hard for his brain to form the words right now,” I explained as simply as I could.

By this point we had reached their front yard and stopped. Emerson sensed freedom and began a happy stream of jibber jabber as he climbed out of the wagon.

Henry watched him for a few seconds and then said sagely, “He’s saying that he wants to come play in our backyard with us. Come on Emerson, let’s go.”

If only the world were full of Henrys.

*********************************************************

This past week, I arrived at Emerson’s private speech therapy appointment early for the first time ever. As we crawled through the hospital parking garage looking for an open spot, I called back to him, “When we see Miss Anita, you should say ‘Hellooooo Anita!’”

Emerson giggled, and much to my surprise yelled out, “Hell-ooooo ‘Tita!!”

Instead of hurtling through the hospital halls with one child in a stroller and another bouncing wildly in the sling on my chest, we casually walked toward the waiting room. The entire way there (and it’s a bit of a hike let me tell you), Emerson called out “Hell-ooooo ‘Tita!!” or “Hell-oooo Mama!!” and we all dissolved into giddy laughter.

The appointment was one of the best ever. He went through most of his flashcards with patience and pronounced sounds I’d never heard him say before. When the therapist asked what his progress had been the previous week, I proudly listed his new words and his attempts at sentences.

I was riding a wave of happiness, so I thought I’d take it one step further and ask what her thoughts were on Apraxia. She had mentioned it as a possibility when he first started, but she wanted more time to make a diagnosis. With his exponential progress I felt silly for even asking, but I wanted to finally rule it out.

I knew the moment I saw her familiar sympathetic smile that my bubble was about to be burst.

“Yes, I definitely think he has Apraxia.”

Finding out about albinism was like getting the wind knocked out of me...it took a while to get my breath back and even longer to get my balance. But finding out about Apraxia was like...like...remember that laughably impossible scene in Indiana Jones and the Temple of Doom when the evil villain plunges his fist into a man’s bare chest and rips out his heart? Like that.

Apraxia, the therapist reminded me, means he will need speech therapy until he’s as caught up as he can be – likely around highschool. I knew from my research that Apraxia also means constant struggles with reading and the parts of math and science that involve language (i.e. story problems). And of course, it means difficulty socializing.

The therapist explained that she knew he had Apraxia partly because an average child would learn a new sound and then instantly generalize it to every new word, whereas he has to learn the sounds of each and every word anew. Suddenly, I imagined this vast ocean of language stretched out in front of me - and we were going to have to guide him through it drop by drop.

Perhaps one of the hardest realities that came crashing down was the fact that Apraxia often runs in families. Fionn seems to be on track so far, but it is too early to rule it out. And the possibility of trying for one more baby, well that is definitely out for good.

It’s not that I don’t love my children exactly as they are and wouldn’t want a million more of them (heck, with those numbers, we’d definitely get our own show on TLC). It’s just that I am already crushed with parental guilt over the horrible genetic hand I’ve dealt them. I feel like we’re on the game show “How many conditions can you give your children?!!”

Host: “It’s the final round and our contestants, Robbie and Cassi, have already taken albinism, sensory processing disorder and severe peanut allergies. For the win, what’s your next move?”

Contestants: “Um...um...we’ll take Apraxia for $500 Alex!!”

I went through the rest of the day in a depressed haze. When Robbie came home from work, I tried to choke it back while I listened to his day and we buzzed around the kitchen preparing dinner. But as soon as the opportunity came, the day’s event came pouring out, ending with me bursting into tears as I slammed the fridge door shut.

He pulled me into a hug and tried to refocus me on the positive. Then we went about our normal routine.

Later on that night, Robbie happily announced that an old friend was expecting her second baby. I turned my anger on him, practically spitting venom. “That’s wonderful, I’ll bet the second one will be a girl so she’ll have one of each and they’ll both be perfectly healthy and happy in every way!”

Was I being bitchy and irrational? Yes. Had I completely lost perspective only a month after returning from the NIH? Yes. Is my Pollyanna makeover going well? Obviously not.

Unlike me, my husband is infinitely patient and optimistic, even with these kinds of outbursts. Sometimes I wish he would throw himself to the ground and beat his fists and kick and scream, “You’re right! This sucks!” But I have to accept that he never will.

When the kids were asleep, we curled up on the couch together and I pressed hot, indulgent tears into his chest. The more I worried out loud, the more he reassured me that everything would be fine.

“He’ll adapt, he always does.”

He was right of course – Emerson is already an expert at adapting in order to get what he wants and needs. I knew then – and I’ve reminded myself daily since – that my guilt isn’t going to help him. So I’ll have to figure out how to adapt too. Eventually.

Models with Albinism

2010-01-15T16:57:00.000-05:00

Step One: Admit You Have a Problem

2010-01-08T10:36:00.008-05:00

There are these moments with Emerson:

One moment I feel Progress sprinting by - lean, agile, unstoppable. The next moment, Progress is face-planting into the pavement.

One day he's smiling and saying "Hellooo!" to strangers. The next day I ask him to say hi to his teacher and he screams, "NOOOO!" and attempts to slap me. One day his training pants are dry all day, the next day he won't come within five feet of his potty chair.

Yesterday was a perfect example. After arriving at preschool, I was clumsily unbuckling his car seat as usual, and as usual he was complaining. "Buddy, we need to go into school so you can have fun with your friends and learn new things," I pleaded. He stopped and smiled. "Yeah! 'chool!"

This was the first time I heard him say school, so my heart leapt. He was so pleased with his new skill, he repeated it all the way to class and I couldn't stop beaming.

Later that night, I was trying to simultaneously bounce Fionn on my hip, cook dinner and help Emerson paint at the table. I would paint various colors on his hand and then he would create bright handprints over and over again on the paper. When we entered his "purple phase," he surprised me by looking at his hand and saying softly, "Puple." Two new words in one day is huge compared to his rate of progress a year ago, so I couldn't be happier.

After I put him to bed, Robbie and I sat down to watch The Daily Show. Robbie's celebrity girlfriend, Maggie Gyllenhaal, was a guest and it didn't take long before she started telling stories about her three-year-old daughter. At one point, she was discussing how hard it was when they watched movies like "Snow White" together because her daughter had so many questions about the death and violence in it.

I grimaced, pained by the idea that a typical three-year-old could not only sit through an entire movie, but could formulate questions about the meaning of death. I know Emerson is advancing exponentially and I should be focusing on that, but every once in a while these reality checks knock the wind out of me.

I guess the first step toward my Pollyanna reincarnation, then, is remembering to keep my eyes on the path right in front of us and not how far we have to travel. I've told myself this about 100 times already, but maybe 101 will do the trick. I'm optimistic.

Tabula Rasa

2010-01-05T16:53:00.013-05:00

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

2009-12-16T09:18:00.007-05:00

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

2009-12-02T21:13:00.009-05:00

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

2009-12-01T21:01:00.008-05:00

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

2009-11-30T02:08:00.007-05:00

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.

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

2009-11-16T18:35:00.006-05:00

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...

2009-11-10T15:03:00.002-05:00

Bring Out Your Crazies

2009-11-10T09:41:00.003-05:00

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.

Our Month in Pictures

2009-11-06T10:46:00.021-05:00

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 did...poorly...at 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.

Picture Schedules

2009-11-06T09:47:00.005-05:00

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: http://www.dotolearn.com/picturecards/howtouse/schedule.htm

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.

Back Online

2009-11-06T09:12:00.002-05:00

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.

Deep Breaths

2009-10-16T11:17:00.006-04:00

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.

Albinism on 20/20

2009-10-01T21:22:00.001-04:00

Check out this special on albinism tomorrow (Friday) night at 10pm ET.

http://abcnews.go.com/2020

Poop Happens

2009-09-29T15:14:00.004-04:00

This past weekend I went to the best baby shower ever - everyone got neck massages and enjoyed a chocolate fountain while swapping parenting battle stories. The topic of discussion when I arrived was "your worst mommy moment" and I quickly discovered that these stories fell into one of four categories: 1) children falling off highchairs or down stairs 2)irrationally yelling at your child to be quiet/go to sleep 3) children eating things they shouldn't have been eating and 4) children pooping in places they shouldn't have been pooping.

My story fell into the last category and was gruesome enough to win me a door prize. I haven't shared it here because of its gag factor, but the multitude of poop stories that night inspired me to put it in writing. (If nothing else, my mom will print it and put it in my memory book so I can use it against my children later in life.)

Still, to be fair, if you are faint of heart or weak of stomach, do not press on.

My tale begins on an average day...Fionn was upstairs taking his daily micro nap and Emerson was downstairs eating a snack. I heard Fionn start to wake up and move around, so I went up to get him - leaving Emerson plaintively wailing for more food. By the time I got upstairs, Fionn was already happily playing on the floor, so I assessed the situation: baby-proof room, happy baby, crying toddler. I figured he would be fine for five more minutes while I finished up with Emerson. What could happen?

Famous last words of parents everywhere.

Literally five minutes later, I went upstairs to retrieve the baby. I got about half way up the stairs when the unmistakable stench of poop nearly knocked me over.

Dear lord...he pooped in his diaper and stuck his hands in it! I thought and made a terror-stricken dash for the bedroom.

Ha - if only it had been that bad.

The first thing I saw was a clean diaper laying in the middle of the floor. Insanely, I breathed a sigh of relief.

The next thing I saw was Fionn playing on the floor near the door. From my perspective, he didn't look dirty, so I breathed another sigh of relief. Then I bent down to pick him up and saw it - poop on his cheeks, in his hair, in his ears, up his nose. I didn't dare smell his breath.

I was like a crime scene investigator....everything was blocked out except the details right in front of me. Slowly, I retraced the evidence. There was a light streak of brown on the floor that got increasingly darker until, all the way across the room, was the jackpot. It was then that the story of what had unfolded became clear.

In the five minutes he was alone, he had taken off his diaper, then pooped, then fingerpainted in it, then proceeded to crawl across the entire room, touching every bucket of toys that lined the wall along the way. He even stopped and opened a few bins up, touching several toys inside. Somewhere halfway through this adventure he stopped to pee, then he finally came to a rest near the door where he spit up. And that's where I found him.

The situation was so awful I had no idea where to even begin. The smell was outrageous and of course we have rustic pine floors full of cracks...cracks now filled with poop.

When I finally regained my composure, I threw Fionn into the tub and gave him a solid scrubbing. Then I called Robbie at work.

"I need you to come home....now."

When I explained what had happened, I heard cackling on the other end of the line. I, however, was far from laughing. Robbie thankfully was able to come home and help watch the boys while I scraped, scrubbed and disinfected everything for nearly two hours. He thought it was hysterical - until he came into the room to check on me and nearly passed out from the sight and smell of it!

Needless to say, I learned a very important lesson that day. Fionn is NOT the kind of kid you can leave alone...not even for five minutes. He is the kind of child that grabs everything within arms length and throws it to the floor within 30 seconds of sitting down at a table. He wriggles out of seat belts and safety belts of all varieties. He eats everything he can fit into his mouth. Yesterday, I could not keep him in the grocery cart, so I had to carry him upside down through the rest of the shopping trip while he giggled maniacally and tried to grab everything off the shelves. In short, we are in serious trouble with this kid. Serious.

Speaking of which, I now hear him making his way back to the dog's water bowl. Wish me luck....

Answer Me!

2009-09-21T11:14:00.010-04:00

I know I've been MIA, but there has been some good news among the frantic chaos that is our life. We finally have two more pieces to add to the ever-changing puzzle that is Emerson Porter.

Emerson with post-nap hair

First, I had an illuminating meeting with his occupational therapist. At the end of last year she handed me a thick packet and instructed me to fill out Emerson's daily activities, along with any related problems. I have to tell you, detailing all my frustrations and struggles was one of the most cathartic experiences I've ever had!

When I handed the completed packet back to her a few days later, she thumbed through a few pages and said wryly, "You guys are having fun, aren't you?"

I snorted. "Yeah."

She promised to get back to me with suggestions, but between summer break and some family issues she was facing, I didn't hear anything until the end of August. In the meantime, the process of writing down all our problems had given me an idea to do a picture schedule. (I'll write a separate post about what that means later, along with posting some pictures.) But when the OT called me, her suggestion was...you guessed it...a picture schedule! For once I was actually an on-the-ball parent!

This was not the good news, however - that came when she offered to meet with me to see what I had done and offer advice. Unlike some of his other therapists, the OT is more blunt and straightforward, which I appreciate under the circumstances. One of the first things she said was, "Emerson is not an easy kid. I hope that makes you feel better."

I laughed, "Yes, it does!"

I appreciate it when people try to make me feel better by pointing out how cute and sweet and fun Emerson is, but it's also nice to have my frustrations validated once in a while. It's nice to hear someone say, "I get it. I get that some days you want to scream, pull your hair out, or take a Greyhound to Alaska so you can start your life over again as a truckstop waitress named Marge."

She offered me a wealth of advice, from picky eating issues to social situations to making his new-found interest in tv an asset rather than a guilty indulgence. Most importantly, she confirmed that his sensory issues are related to his poor vision and not a whole new diagnosis of sensory processing disorder. I also asked about autism since no one has given me a straight answer so far. Frankly it hasn't been a huge concern of mine lately, but I wanted to know her opinion since she is on the autism diagnostic team.

She was taken aback that I asked and that the other therapists hadn't told her I was concerned about this. (Had I known sooner that she was on the diagnostic team, I would have gone to her first!) She told me an unequivocal no - he does not have autism! FINALLY someone gave me a real answer, even if it was just eliminating one of many possibilities.

This meeting made me realize something else - I need to start bringing tape recorders to document these kinds of conversations. She told me a lot of information about why she doesn't believe he has autism, but I can't recount it now because I was too busy trying to appear as if I wasn't choking back tears. And it didn't matter because halfway through her speech she started wiping her eyes and saying, "You're making me cry too!"

I'm such a freakin' baby.

The second bit of good news (is anyone still out there reading this novella? Hello? Oh well.) I took Emerson to his speech evaluation at UM hospital. They only offered me one time - right in the middle of nap time of course - but I suppose it's better to show his worst side during an eval anyway. Despite not being at his best, the therapist did not think he has Apraxia, although she cautioned she can't rule it out until he can say more words so she hear how he pronounces them. She did diagnose him with a slight receptive language disorder (ability to understand language - he was actually within the normal range, but she wanted to give him that diagnosis so that she could include some receptive language goals) and definitely an expressive language disorder. She explained that they have to call it a disorder for medical billing purposes, but her sense was that it was actually a delay - meaning he will catch up in time. Yay!

She gave me some diagnosis codes and advice on how to deal with the insurance company, which helped me to finally get the answer I was hoping for. They do in fact cover that facility, so we are on the waiting list to start services. The evaluator told me the school early intervention would be enough therapy if insurance didn't cover the hospital, which was nice to know. But since it's covered, I want to make sure we get all the extra help we can! Now I just have to figure out how to negotiate that damned hospital parking lot on a weekly basis...(does anyone else think it's insane that hospitals now have valet parking? Even for patients?)

So that's all the news that's fit to ramble about at our house. The boys have hit several milestones this past week as well, but I'll write about that later. For now, here are some more random pics:

Life at our house includes a lot of wrestling.

Fionn prefaces his attacks with a shrill battle cry.

Can you see my joy at being an oasis of estrogen in a sea of testosterone?

See You in September

2009-09-14T10:22:00.003-04:00

Well, Fall has undeniably begun...school for the boys starts tomorrow and mine has already started (although I've been pretending it hasn't so I can get more done on the house). The noise of neighborhood kids playing first thing in the morning has been replaced by the frantic shouts of parents as cars idle, last night's homework is collected and book bags are slung across reluctant shoulders. And the most cliche but romantic sign of all - the trees are starting to blush pinks and golds and even the occasional deep reds.

The other day I decided to take advantage of the delicious weather was by taking an afternoon walk - an activity that would serve the dual purpose of putting Emerson to sleep while giving me the chance to try out my new camera.

This "relaxing" walk ended with Emerson demanding to play at the park instead of napping and I took very few pictures. In fact, I learned two important things:

1) Taking an SLR camera on a walk with kids makes one look like a buffoon on safari. Emerson was in his stroller, the backpack diaper bag was slung across the back of that, Fionn was strapped into a sling on my chest, and the large camera (compared to a point and shoot) was strapped to my side like a messenger bag. I garnered quite a few comments and even more raised eyebrows. Trying to bend over to pick something up or frame a shot was downright comical.

2) Children have no respect for artistic integrity. Every time I would try to "compose" a shot with my camera, a lot of whining and shrieking ensued. I guess I will just leave it on "sports mode" and try to take pictures on the run.

So here are the lame fruits of that first walk (I spared you the pictures where I attempted artistry, but I'll post them later on flikr):

I tried to explain to Emerson that socks and sandals are a major fashion faux pas. He didn't seem to care.

Fionn is now crawling, which makes the mulch-covered playground a blast.

After I chide Fionn for eating mulch, it becomes his sole focus in life.

A couple Robbie took of the boys. He enjoys the fact that you can press the shutter and take continuous pictures - hundreds if you wanted. Therefore we try to hide the camera from him as much as possible:

Woo Hoo

2009-09-10T08:52:00.004-04:00

The Good News: I finally broke down and got a new (ish) Nikon D40 camera. This means I can finally, at least in theory, take good pictures! I can't wait to take pictures of my first born son.

The Bad News: I had to sell aforementioned first born son to pay for it.

So here's our second son, enjoying post-bath euphoria:

Fionn after we break the news that the camera is the new baby in the family:

Now I'm off to figure out how to use this darned contraption. See you in a few weeks!

Groping Forward

2009-09-01T10:55:00.006-04:00

My son is going to learn to use a blind cane and read Braille.

If you had told me this a couple of years ago, I would have instantly dissolved into a salty puddle. Now I merely shrug. I think I'm able to take into stride because I know he could get by without either if he had to. But I've slowly realized that we need to give him these tools so that he has a better chance of success and independence in the future.

For instance, he can walk around (and climb and run) just fine because he knows when to be cautious. If he comes up to a change or step, he tests it out or gets down on all fours to crawl over it if he's unsure of the height. Or if he's in a hurry, he'll grab my hand and let me help him across - all of which is great when you're 2 years old. Not so great when you're 22.

He isn't near reading yet, but he will learn to read like other kids in grade school. He'll have the CCTV to make the letters larger, which is just fine for a few grades when reading is minimal. But by the time he is reading large amounts of text in high school and college, he runs the risk of eye fatigue and not being able to get through it. Thus, Braille can be a second option to turn to.

I'm thinking about these things because Fall is upon us and therefore the transition from his IFSP (early intervention plan) to his IEP (school plan) is here. This is a major process that involves lots of time, meetings, and haggling over goals, accommodations, etc. I think his team of teachers and therapists are really good, so I'm not stressed about fighting with them like some of the stories I've heard from other parents. But we have to start thinking about his short and long-term goals for school as he prepares to enter preschool in November, all of which is a little overwhelming.

Thanks to our new vision therapist, who is a little more on the ball, we were finally connected with the Michigan Parents of the Visually Impaired support group. I talked with the head of the group, Amy, the other day on the phone. By the time I hung up, I was doing my best Howard Dean "YEE-HAW!" She was a wealth of resources and information! The best part was that she mentioned her son, who is now in grade school, also had to go through sensory processing therapy and intense speech therapy.

She FINALLY confirmed for me what I've been trying to prove for the past 2 years - that there is a connection between poor vision and speech issues!!! She mentioned that many of the parents in the group have had their children in speech therapy at one point or another, which is a huge relief for me to hear. She also convinced me that it was time to get some resources outside of the school to supplement his speech therapy. After countless phone calls to my health insurance carrier, I still don't have a clear answer as to which speech therapists are covered, but I got a referral to the University of Michigan pediatric speech pathology center just in case. They *think* that center is covered, so I have to call back and attempt to talk to someone who knows what the hell they're talking about before we actually go to our first appointment later in the month. Come on health care reform - I want a public option so I can tell these Blue Cross yokels to kiss my reimbursement forms!

Speaking of health insurance, I am in the process of getting SSI for the boys as well. I've heard the monthly amount is negligent, but it would allow the boys to be covered under medicaid. This means we could finally set up an appointment with Dr. Hertle, a leading albinism expert who may be able to perform a surgery to help with the nystagmus. In the meantime, dealing with the Social Security office has already been a nightmare - and that's just trying to get a live person on the phone so I can make an appointment!

On the bright side, we finally set a date for our trip to the National Institute of Health in Washington, D.C. This November, they are paying for us to fly out and stay on campus for three days while they study the boys. This is the first time that anyone's done such a major study on albinism, so we're excited to get a chance to contribute. Hopefully someday the parents of a newborn with albinism will benefit from the information they gather so they don't have to deal with all the unknowns we deal with.

The boys have to endure three days of vision tests, skin tests, blood tests, and endless paperwork, but at least we can explore D.C. during the evenings and before we fly out. If anyone has ideas for keeping kids happy in a waiting room for hours - please share! We are used to 4-hour vision appointments and always come prepared with toys and snacks, but we're going to need the big guns this time!

Our Tribute to Teddy

2009-08-27T10:05:00.004-04:00

Like any blue-blooded, peace sign-toting Liberal, I love Ted Kennedy. But it seems to me like we've had a glut of celebrity deaths this year and it's making me wish there was a law limiting public memorials and tributes to ONE day per famous person. Ted Kennedy has only been gone a day and already I'm sick of hearing about him!

Now that I have that off my chest, here is a link to our previous post of the "Giant of the Senate" next to Fionn (scroll to the bottom):

http://emersonporter.blogspot.com/2009/01/in-his-own-right.html

(It's too bad I don't have a camera to capture the true jowls and bulldog underbite that Fionn often sports, increasing the resemblance.)

News From the Garden

2009-08-27T09:41:00.003-04:00

I feel like I should smoke a corn husk pipe and sit in a rocking chair while I write this, but for those fellow gardeners out there, here is an update on ours:

We've been pulling in a lot of tomatoes lately, which is good because I heard a story on NPR yesterday about a tomato blight that is threatening to destroy most people's crops. I guess the blight was spread by people buying infected plants from box stores like Lowe's and Home Depot, so I'm hoping we'll be spared for buying from a small organic farmer.

Robbie is convinced he created a yellow pepper/tomato hybrid because our heritage variety of "yellow perfection" looks exactly like a small yellow pepper but has the taste and seeds of a tomato. It's one of his new favorite hobbies to show them to people and make them taste a bite.

The greens and herbs are heading into the home stretch but keep on giving. Things that normally go nuts like beans and peas and zucchini are slow (anyone else having this problem?), while we've been able to pull in plenty of beets, carrots, a small head of broccoli, and even a couple of giant spaghetti squash.

I suppose we still have plenty of time for more things to truly explode, including a melon plant and some tomatoes the size of volley-balls, but the darkness and crisp air are slowly and steadily creeping into our late summer days - a reminder that 6 months of winter hibernation are coming. Yuck. In exchange for this unbearable dreariness, Michigan at least rewards us with spectacular color and the endless apple orchards of Fall. But I can't help but wonder, where did the summer go?

Fionn Again

2009-08-20T10:40:00.004-04:00

Fionn has no trouble commanding equal attention in our house, but I feel like I often ignore him on the blog. So here is a gratuitous video of him just being cute (you might want to turn the volume off because my "baby talk voice" in the background approaches "dog whistle" pitches):

(The stuff on his face are the remnants of breakfast - not a strange growth)

I wanted to post a video of Fionn's new version of crawling - sort of a scootch and army crawl hybrid - but my camera is broken. The dog knocked it off the table and now the shutter won't work. My first thought was "Yay! Nikon D40 here I come!" But my house renovation budget quickly disagreed with that. So now I'm in the land of Denial, hoping it will magically fix itself or that Robbie's plan to rip it apart will prove fruitful. Or that one of my friends will have a digital camera lying around that they've been dying to give away...eh? eh?

Sigh.

Happy Birthday - Sort Of

2009-08-18T12:03:00.004-04:00

This past weekend we hosted all three sides of Robbie's family (mom, dad, step) for Emerson's birthday party. We decided that since the last two birthdays were snowed out and so close to Christmas, this year we were officially moving it to the half birthday mark. Except that we were in Utah in June and then swamped in July, so now that it's August it is more of a 2 3/4 birthday - but whatever. Robbie's mom was in town from Texas and about 30 other people came, so it was a fun but exhausting shindig.

Emerson acted as I feared...overwhelmed by all the people and a little clingy/crabby. He had fun hitting the pinata, opening presents, and of course eating cake, but he spent most of the time trying to climb up my leg. At one point, he gave up and just started walking away down the sidewalk. Nothing like the birthday boy leaving his own party! Luckily his two cousins retrieved him for us and he stuck around for the rest of the night.

The best part for him was getting his new kitchen set to complete all the fake food and cooking ware we bought him earlier in the summer. He LOVES to cook in it - especially since it has a million doors to open and close. And we love that it fits in the corner and only cost $10 on Craigslist. (We are total cheapskates and proud of it.)

For grandmas and aunties, here is a video of the cake. Emerson did try to blow out the candles (I explained what was going to happen that morning, but I didn't think he understood since the moment he heard the word "cake," he jumped out of bed and demanded cake for breakfast.) He couldn't quite blow hard enough to put out them out, but it was a good first try:

Simple Summer Pleasures

2009-08-11T10:24:00.004-04:00

I just finished officiating the last of a heap of summer weddings and now we are in a mad dash to finish at least ONE room before a big family party this weekend. This is my way of saying I'm too tired and fuzzy-headed to write much right now. So instead I thought I'd share some recent pictures from our summer afternoon in Detroit. I was so excited to see how many people were packed onto Belle Isle and the Riverwalk that day!

Albinism on YouTube

2009-08-07T09:37:00.002-04:00

I just found this college student named Anna who has a great YouTube channel about her life with albinism. I highly recommend you check out her videos because they're funny and educational - even for people not affected by albinism!

Anna's YouTube Channel

Awkward Family Photos

2009-08-05T20:13:00.011-04:00

Thanks to my friend Melodie, I found the site "Awkward Family Photos" and laughed myself silly. I find these kind of sites are best viewed in large chunks because the humor tends to snowball. The first couple elicit a chuckle, but by the 20th one, I'm downright punch drunk.

Recently, I got around to mailing off the photo packages from the shoot we did with Robbie's immediate family a few months ago. Here are some samples - all equally worthy of ending up on Awkward Family Photos. These are the ones we actually bought, if that's any indication of their overall quality. I partly blame it on Sears photo studios (you get what you pay for in this case), partly on too many small children without adequate naps, and partly on family members who consistently refuse to smile.

Families are precious....

(forgive the poor scanner quality)

Our boys are the ones with white hair (that joke never gets old)

Can't get the kids to hold still? The obvious solution is to fan them out on the floor and have them look up into a bright light!

The gang's all here...6 brothers and sisters, 5 nieces and nephews, a none-too-thrilled brother-in-law, an equally ecstatic mother and last but not least, dad. Plus our family of four. It's a miracle we fit onto the set.

Tricycle Riders UNITE!!!

2009-07-30T08:02:00.008-04:00

Tricycle riders everywhere have a new spokesman:

I'm so excited to have something in common with Skip Gates! Although his tricycle makes mine look pretty bad-ass in comparison. Here I am, struggling to go up Ann Arbor's hills with one speed while he motors around Martha's Vineyard on this 24-speed custom-made trike from Germany. Oh to be rich.

Thank you to my mom, who directed me to Larry Wilmore, who directed me to my fellow triker.

The Daily Show With Jon Stewart

Mon - Thurs 11p / 10c

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2009-07-28T19:36:00.006-04:00

Ok, not us personally, but the issue of albinism. The World, a show on NPR, did two great stories on the challenges that people with albinism face in the world, including the rampant murders in Africa. Please take a moment to listen - they are short but very informative:

Albinism Worldwide on The World

My only complaint is that they used the term "albino" a million times despite the fact that it's largely rejected in the albinism community. We are pretty laid back about it in our family, but considering how rare it is to have a story on albinism, I hate that the term is being reinforced among the general public.

On the bright side, one of the people they interviewed was albinism expert Dr. Brilliant!! No, that is not his super hero alter ego - that's his actual name. We met him at the Chicago conference and he's actually a sweet man in his 40s or 50s with salt and pepper hair and dark rimmed glasses. I would tell Robbie some interesting fact I noted about the presentation (Robbie and I took turns checking on the kids in the other room, so we had to fill each other in later) and Robbie would ask in his best cartoon voice: "Wait, is that what Dr. BRILLIANT said?!"

This is life with albinism - you find humor wherever you can.

Ann Arbor Goes Hollywood

2009-07-26T23:36:00.005-04:00

In the Tom Hanks' movie "Big," there's a scene where he returns to find the fortune teller machine, only to discover that the carnival has moved on. What was once a glittering spectacle is now a desolate field with bits of rubbish drifting about. The sky is gray and full of dreary storm clouds to match the mood.

That is how my neighborhood park feels now that the carnival called "Castle Rock Pictures" has packed up their set and moved on.

Ever since Michigan passed a tax break to lure in film crews, Hollywood has been knocking at our door. In one case, literally when our neighbor brought over a location scout to see if our house might be a good fit for the new Hilary Swank movie. It wasn't, but we had fun describing several houses that might work since we had just finished house-hunting. They were looking for "Victorian charm" meets "crack house," and since Ann Arbor is a hippy town, we've got lots of places that fit that description.

Last summer, we enjoyed watching them construct a fake cafe downtown and then crash a trailer into it. We missed the day of the actual explosion, but the next day we saw the trailer (with the phrase "God's A**hole" spray-painted on the side) and the charred remains of the cafe. As we walked past the scene, I looked over and noticed that one of the storefronts across the street was filled with groceries and a beautiful display of flowers and produce.

"Look! We finally got a market downtown!" I said, pointing excitedly.

Robbie laughed.

"It's a facade for the movie."

"Oh.Damn."

Recently, they decided to film part of Rob Reiner's new film, "Flipped", at the park I take the boys to nearly every day. The film involves several scenes where a girl refuses to get out of her beloved sycamore tree, so they chose to use one of two large sycamores in the park. The Observer laid out the plan in detail - they would trim back one of the trees so that it could be digitally removed later on and they promised to use a professional arborist. They also agreed to resurface the basketball court and other minor cosmetic things to make up for the disturbance.

Despite all their careful planning, a protester showed up to stop the cherry picker from getting close to the sycamore tree and they had to stop work for a day. The sheer insanity that someone would protest the trimming of a tree is just part of why I love this town!

Anyway, in the weeks leading up to filming, the park regulars enjoyed watching the strange scaffolding and structures go up. Groups of people who would never talk to each other otherwise huddled to debate what they could be making. Slowly, the number of "regulars" increased until, by the third day of actual shooting, the park was filled with people at any given hour.

One day, a construction worker stopped his truck and leaned out the window.

"Hey - what's going on here?"

I explained as much as I knew, which was only a few basic facts. But even with this little bit of information, a huge smile spread across his face.

"Wow! I wonder what big actors are going to be in town? I guess we're all going to get our 15 minutes of fame, eh?"

I laughed and nodded. "Yeah, sure."

I found it funny that he would think merely being close to a film crew could make him famous - like they were going to stop shooting and say, "Hey - you over there gawking at us. YOU should be in movies!!"

The idea was ridiculous, but I admit there was a certain magic in the air with all that hoopla. Maybe nobody was going to get discovered, but it was fun to watch the lights hoisted up on cherry pickers, actors in 1950's costumes flipping open their cell phones to text someone the moment they got off set, or people carrying around fake trees - trying to find just the right spot.

More than anything, it was fun to have people from all over town gathered together - some with binoculars and camping chairs, others pretending to "casually" walk their dog by for the 100th time. Joggers stopped to jokingly complain about their restricted running area; parents pushed their kids on the swings while discussing the finer points of cinematography; and everyone of every age knew the name "Rob Reiner."

One day before heading over to the park, I overheard a group of 8-12 year old neighborhood boys discussing whether $75 an hour was a decent wage for an extra. I silently wondered if they paid them for the time they spent sitting and waiting in the catering tent. Which was most of the time.

I don't think famous actors ever have the right to complain about how hard their lives are, but I admit that movie-making is mostly a bunch of actors sitting around....waiting....and waiting....then working for 10 minutes...then back to waiting.

I tried to snap a few shots of the whole spectacle, but unfortunately that day my son never let me get close enough to show the full effect. Apparently he thought swinging and going down the slide were FAR more important than the movies.

This past week the filming has "wrapped up," as they say, and the trailers and antique cars and catering tent and police officers are all gone. It's just a field again. Everyone except the regulars have gone back to wherever they came from. And I am forced to push kids in swings for hours without anything interesting to distract me. Sigh. Movie-making is such a cruel, cruel mistress. Here one day and gone the next.

Drumroll please.......

2009-07-24T09:53:00.002-04:00

The winner of "The World's Lamest Giveaway," chosen by www.random.org, is:

#6 - Shantana!!!

Thank you to everyone for sharing with such honesty and humor!

Scenes From Daily Life III

2009-07-15T01:16:00.005-04:00

The other day I was in one of my melancholy moods (this is an elegant, Victorian way of saying "bitch fests"), so I decided to work out my feelings by haranguing Robbie about a variety topics...including vasectomies, adoption, and the many physical feats performed during childbirth.

By the end of the night, he was sprawled out in bed next to me and I was running through an internal dialogue about the unfairness of being surrounded by three burping, farting boys and no daughters. In an attempt to goad him into yet another venting conversation, I suddenly blurted out, "The thing is, I don't even LIKE men!"

There was a long silence - and then his groggy, muffled voice:

"Is this the beginning of one of those awkward 'coming-out' conversations?"

I laughed so hard I couldn't speak for several minutes. Recognizing this rare opportunity for what it was, he rolled over and fell asleep.

The World's Lamest Giveaway!!!

2009-07-15T00:11:00.005-04:00

A week or so ago when I started writing this post, I was riding the high of my latest "brilliant" idea: a giveaway.

You see, when you are lucky enough to become a big-time blogger, people give you really cool products to give away to your readers. However, I am not a big blogger, so my "prizes" were simple to begin with.

Basically the idea started when I got together with some long-lost mommy friends for a play date/bitch session. It was nice to be able to vent honestly about motherhood with other moms who have toddlers and babies. It got me thinking about the book I recently read - I Was a Really Good Mom Before I Had Kids - which begs parents (but women especially) to indulge in more of this honesty and less of the back-biting competition. I thought to myself, I have a great group of moms, dads and someday-to-be-parents online. Maybe I could get them to share their own ugly truths and/or fears?

Unfortunately, most of the people who come to my blog are both wonderful friends and shameless lurkers. So I decided I would try and bribe a few of them out of their shells with the promise that a comment automatically entered you into a giveaway. The prize was a once-read copy of the aforementioned book along with a brand-new, hardcover copy of the book Bad Mother by Ayelet Waldman - shipped straight to your door by moi!

And this is where it went awry. I honestly thought of this idea while frantically shoving a bagel down a starving toddler in Barnes and Noble. I realized that a used book was a lame prize, so I did a quick walk through in the parents' section and immediately spotted Bad Mother. Even as I bought it, I was internally rolling my eyes at the idea that yet another book had been written about the Bad Mother phenomenon. I mean, it seems there are a million books and bloggers who have covered this subject, and I was promoting the topic once again with yet another book.

When I got home, I lazily thumbed through a couple of pages. Then a couple more. Then I said "screw it" and devoured the entire book in whatever precious spare moments I could find. It was great. So great that I came up with the world's corniest comparison:

I Was a Really Good Mom Before I Had Kids was like stealing a handful of candy from the candy dish here and there - short, sweet and temporarily satisfying. But Bad Mother was like slowly indulging in a rich dessert. Her memoir writing is a fully sensory experience and her observations are dead on. The phrases and images are still rolling around in my head.

The only problem is that my "prize" has now become two once-loved books. So lame. If, however, you want to read them anyway, feel free to comment and share a parenting (or babysitting for that matter) horror story. Or just indicate if you've done one or more of the following:

A) Had the desire to physically throttle your children
B) Let them eat something neon-colored for breakfast
C) Left them in the car to sleep
D) Told them to "stop crying" even though you know this only makes things worse
E) Found yourself doing that one thing you swore you'd never do when you became a parent

I'll pick a winner (at random) on Friday, July 24. If no one enters a comment, I'll just search out the most harried mother I can find on the playground and slip them into her diaper bag - along with a note that reads "I'm right there with you, babe."

The Long-Promised Garden Pictures

2009-07-07T15:59:00.008-04:00

These probably don't do Robbie's creation justice, but I had a squirming baby in my arms. C'est la vie.

The main garden

Annual bed turned into bountiful greens.

First strawberries

The melons and even more tomatoes

Eating our first harvest

Peonies finally explode

Backyard

Our new compost tumbler

Our new rain barrel

Our little white house

When Momma's Happy....

2009-06-27T12:49:00.006-04:00

My parents gave me the best gift in the world.

Free time.

For the past two days, I've had 6 glorious hours each day to go to the UU General Assembly by myself. I got to ride the train downtown and instead of wrangling children, I was able to just sit and observe the world around me. I watched the long stretch of businesses and industrial sites that line the train track whir by - many covered in murals and graffiti. (My favorite was a Diego Rivera-esque mural of iron workers that someone had spraypainted with the phrase "When you burn down paradise, you can blame it on progress.")

I noticed the glittering squares of compacted scrap metal at the recycling center, the thick patches of thistle weeds blooming misty purple, the woman in the seat next to me trying to hide three squirming kittens down the front of her shirt.

I was able to get ready by myself...no sunscreening or pinning down squirmy bodies to put pants on. I walked from place to place without 50lbs of children to haul around with me. I got to eat lunch with my classmates and feel like a seminarian again - an intelligent adult who can carry on a conversation and finish a meal without being interrupted.

In short, it was heaven.

When I got home the first night, I told my mom, "I really need to find a way to get more alone time. I'm such a better mom when I come back."

Then I proceeded to put my child in the bathtub with his diaper on.

It took me several minutes before I noticed the giant swelling mass barely clinging to his body. He looked up at me with an expression that clearly said, "What the hell, mom?"

So maybe I'm not a more alert mother....but a happier one.

My Animals

2009-06-20T19:02:00.004-04:00

I'm always on the hunt for books with simple pictures to help the boys, and I just came across one at Pottery Barn of all places. It's called My Animals by Xavier Deneux and has adorable black and white images worthy of hanging on the wall. It also has a hole in every page, which is a strange touch, but Emerson loves exploring each one:

Indoctrination Has an Upside

2009-06-17T16:37:00.005-04:00

Ch-ch-ch-changes.....Amidst everything else going on with Emerson right now, we are trying to get him to give up his bottle addiction (Robbie finds it humiliating - I could care less except that he's chewing through a $7 nipple every week) and we are beginning the dreaded potty training journey. I was feeling a little overwhelmed at my growing list of motherly duties, so I looked to Barnes and Noble for some outside support.

After scouring the shelves for several minutes while Emerson overcame his fear of Thomas the Train in order to play on the train set, I found two perfect books: No More Bottles for Bunny! and Once Upon a Potty.

Luckily, he LOVES his new books. When Bunny proclaims that bottles are for babies and tosses his bottle into the trash, he eyes the illustration with a mixture of fascination and trepidation. But I have noticed a drop in the number of times he asks for the bottle each day.

The potty book has an equally interesting picture of "poo-poo" in the potty, which he turns to again and again while sitting in the bathroom. The only thing that bothers me about the book (besides an uncomfortably graphic picture of "Joshua's little hole") is that the potty looks like a water pitcher. But whatever, it's doing the trick.

Since these books have been a success so far, I'm going to move onto others that I saw on the shelf, like Hands Are Not for Hitting, Teeth Are Not for Biting and Feet Are Not for Kicking. As he gets older, there's also the dinosaur series: How Do Dinosaurs Clean Their Room?, How Do Dinosaurs Eat Their Food? and How Do Dinosaurs Say Goodnight? Hopefully he likes dinosaurs.

I figure if indoctrinating my children with books works, I'm going to write a series of them for the teen years and beyond. With titles like Once Upon a Curfew, How Do Teens Pay for Their Own College?, No More Living in Mom and Dad's Basement for Hippo, and Parents Are Not for Putting in Nursing Homes, it's sure to be a success.

I know, I'm hilarious. Now back to researching potty training....

2009-06-14T22:08:00.006-04:00

Never have truer words been spoken (or I guess written in this case). My friend recommended this book long ago and I am just now getting to read it - thanks to my parents acting as built-in babysitters, chefs and maids. (Although even with all their help, we all collapse into bed at 10 every night and I only read one chapter before passing out).

This books discusses what has become a popular topic lately among bloggers and pop culture writers: how freakin' hard it is to be a mom. This isn't new news, but I'm glad to see that women are becoming more honest about their lives and trying to help each other rather than judging each other.

I've been thinking a lot about this topic because if anyone is convinced that they are the world's worst mother, it's me. I don't say this to get a bunch of emails and comments praising me, honestly. In fact, whenever I get a new reader to this blog, I'm surprised at how often they tell me: "You seem to have it all together."

To which I can only reply: Who's blog are you reading?!!!

The other day, after dragging my screaming children to early intervention late once again and then losing the only remaining pair of medical sunglasses left (I lost the first pair the week before), I asked Emerson's coordinator if we could have a talk. She was helping me lug the lightbox the visual teacher had just given me to my car and then we stood in the rain talking. I told her that we were concerned Emerson might have another condition besides low vision that was causing him to have so many delays.

This was due to several factors: the new VT hadn't noticed a correlation between low vision and developmental delays in her years of experience, many of the other children with albinism we've met haven't had delays or their delays haven't been as severe, and Fionn (so far) hasn't had the same kind of delays.

The coordinator pondered this for a moment and then said, "Well, I haven't noticed anything about him that would indicate he has another condition. He just seems like a typically developmentally delayed child."

My heart leapt. "So he'll just grow out of it in time?"

"Maybe. Or he'll be delayed for life."

My heart plopped out onto the wet asphalt with a sickening thwump.

She continued, "The difference is whether or not he continually progresses. Many kids leap forward all of sudden when they start preschool and others don't. If he doesn't, that means it's a lifelong issue."

Just then we heard a crunch as two harried parents trying to get their minivans out of the parking lot behind us crashed into each other. Between that and the gray drizzle, I couldn't wrap my head around what she was saying.

She went on to say she would talk to the other teachers and get some second opinions, but in my head I was visualizing the "special ed" preschool class we had visited a couple of weeks beforehand since he will start in January. The class was full of subdued children with perpetually runny noses - and every degree of handicap was represented. On the one hand, I knew that having him in special ed would relieve the pressure on both of us since he can't speak and therefore function in a regular class. On the other hand, nobody wants to admit their kid has to be in special ed. And now here was this woman telling me that it could be lifelong. That word feels like a baseball bat in the stomach.

I've done research since then and have come up with a wide array of "labels" to get at what might be going on with him: sensory processing disorder, language learning disorder, language delay, and (hardest of all) slight mental retardation. Only time will tell which one is the case, but right now none of them seem to fit exactly.

Robbie finds it hopeful that the coordinator doesn't recognize a condition and that none of these labels fit perfectly. I understand where he's coming from, but on the other hand I want a label so that I know what's going on and what to do about it. I see people watch him with questions in their eyes: why doesn't he like certain textures? why doesn't he talk? why does he seem less mature than other kids his age? But I don't know the answer any more than they do. And that makes me feel like a shitty parent.

Here's the reality: I took all the prenatal vitamins and herbs, did yoga and meditation, had a natural, unmedicated birth, slogged through breastfeeding problems determined to keep nursing, coslept, did cloth diapers, nursed for a year, made him homemade organic babyfood, still feed him a vegetarian and mostly organic diet, analyzed and researched the hell of out every vaccine, agonized over soymilk vs. cow's milk, made sure I introduced the right foods at the right times and didn't use antibacterial soap so he wouldn't get allergies, I took him to playdates and classes and early intervention...the list goes on and on. But in the end, I still gave him genes that caused low vision and delayed development and a severe peanut allergy.

What's even worse is that despite everything, he is a sweet and loving little boy who - because of the lot he's been dealt in life - needs even more patience and affection from his parents. But instead of giving him that, I agonize and feel guilty and lose my patience and generally hate the job of motherhood 95% of the time. And that makes me feel like a shitty parent.

I desperately hope that someday Emerson will be a highly functioning member of society and we will laugh at the idea that we ever worried about him. But in the meantime, I will keep popping Zoloft and sign Emerson and I up for "Mommy and Toddler Yoga" class.

Most importantly, I need to tell that perfect image of motherhood I dreamed of before I actually had kids to hit the road. I will proclaim it from every mountaintop if it helps any other moms: My children are special needs and I am a shitty mom...but we're going to get through it together.

Utah or Bust

2009-06-09T15:37:00.006-04:00

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

A Boy and His Bike - A Girl and Her Trike

2009-06-04T00:18:00.006-04:00

If you are my mother, just save yourself the heartache and stop reading now!

So, thanks to this post from Sweet Juniper, my husband finally got his way and made us into a biking family. I've been holding out on his pleas to get us all biking, but once he saw Dutch's "popscycle," I could tell by the glint in his eye that I had lost the battle for good.

My objections to biking were twofold: first, I don't like the idea of carting our children around with nothing but a foam and plastic helmet between them and the rest of the world speeding by. Second, I completely lack the balance and coordination to ride a bike.

I grew up riding bikes all the time - it was the ticket to freedom for every suburban child. In fact, one of my favorite pictures shows me riding my infamous "Dusty Rose" pink bike while wearing a ruffled pink dress. The image is nothing but a pink blur with a horizontal brown smudge that represents my long hair streaming behind me.

However, occasionally my coordination handicap got the best of me. One time I was riding down the sidewalk and I just...fell. I didn't hit anything, wasn't startled. I just fell. Now add on top of that being out of practice riding a bike for 15 or so years, and you have a disastrous combination.

Despite my well-reasoned concerns, Robbie was on the internet searching for a bike for me within seconds. (He is on his third bike from Craigslist and the first two never saw the light of day.)

As I watched helplessly, I saw a picture that intrigued me. "That's what I want - a bike with three wheels!" I blurted out. "That seems much more stable and safe."

Robbie laughed. "First of all, if it has three wheels, it's a tricycle, not a bicycle. And second of all, those are for old people."

"No it's not! I've seen people riding them around town," I retorted.

This really got him laughing. "Yes, because we live right next door to a retirement center!"

I rolled my eyes and left the room, not wanting to waste my energy. When I came back, he had Craigslist open and was searching for tricycles. To both our surprise, a brand new post advertising a "bike with a third wheel - $50" immediately popped up. Now Robbie was really on fire.

"I'm going to call him first thing tomorrow and set up an appointment to see it."

I hoped he would forget about it overnight. He did not.

When he came home from work the next day, he announced we were taking a family trip to middle-of-nowhere Michigan to see this contraption.

"What did the man say when you called about it?" I asked.

"He said: 'It's in good condition. It's...you know...for old people.'" Robbie couldn't even finish the sentence without laughing.

Apparently he told his co-workers that we were going to look at a tricycle and one man said, "Don't make her buy a tricycle. That's just mean." Robbie tried to explain to him that I WANTED a tricycle, but the man didn't believe him.

Suffice it to say, by the time we pulled off a rural highway and into the seller's yard, I was mortified.

The seller was a middle-aged guy typical of rural Michigan (he was no Farmer Mike, though). We'll call him John.

Apparently it was his sister's bike, but she had become too old and frail to ride it. So I guess tricycles are only for sort of old people. Or really old people in really good shape. Anyway, John motioned to the wooden garage and there stood the three-wheeled, maize and blue beauty.

"Take it for a ride if you want," he offered.

"It's actually for my wife, so I'll let her try it out," Robbie said, clearly stifling laughter. When John looked confused, Robbie continued. "She's afraid of regular bikes."

It's hard to regain one's dignity in a situation like this, so I did a mini circle with the trike and called it good. John, however, wasn't satisfied.

"No, no. Take it outside and ride it as far as you want."

I begrudgingly peddled into his tiny driveway and then veered dangerously toward the garden. Within a couple of seconds, I was stuck on some rocks and had to get off to push it out. I could hear Robbie and John talking behind me all the while.

"She can drive it on the highway if she wants. It might be easier," John offered.

Robbie was downright gleeful by now. "She's too scared to ride a regular bike, so there's no way she's going to ride on a busy highway!"

I made my way back to them and tried to close the deal as quickly as possible. I thought Robbie could just throw it into the back and we'd be off again, but apparently a tricycle takes up a lot more room than you might imagine. Robbie had come prepared with straps and had a plan to tie it to our roof.

I was more than doubtful about this, but we were stuck now. John looked equal parts doubtful and amused, but he said nothing. Several minutes later, this giant hunk of metal was perched on our car and strapped down. As we waved goodbye, I called out to John, "If you hear about a horrible accident involving a tricycle, it's probably us."

He snorted and shook his head in amazement as we pulled away.

The slow, painful drive home was made worse by the deafening hum of straps in the wind and the constant fear that a tricycle was going to bounce off our car and into someone's windshield. As we made our way, I also noticed what a strange shadow we made, bouncing up and down the fields on either side of us.

We did eventually make it home without incident, thanks to Robbie's ingenuity. I immediately tried to take it on a ride around the block, but only made it to the end of the street before feeling so humiliated that I turned back. I let Robbie ride it for a while and the sight of him only confirmed that you cannot have any dignity while riding an overgrown tricycle.

The second trip out, I rode while Robbie pulled the boys in their wagon. I was just discussing which hand signals to use for turn signals when a man in a vespa pulled up behind me. We immediately came to a stop sign, so I did the left hand turn signal I just learned and made a drunken swerve to the left. I could hear the man on the vespa chuckle and say sweetly, "It's ok, that's the way to do it."

If I hadn't already felt like a 3-year-old, that certainly would have done it.

When Robbie returned to work that Monday, several co-workers asked him "Did you do some triking this weekend?" And then burst out laughing. Robbie found it just as amusing, but he was also a little jealous of my new wheels. So at least in that sense I was vindicated.

Meanwhile, he began collecting bike seats and helmets for the kids to make this a truly family affair. We realized too late that a tricycle is not made for the kind of seats that hook on, so both of them ended up on Robbie's bike. I decided my job was to ride behind them and absorb the blow of cars and/or carry cargo in my giant basket.

Finally, last night we took our first official outing as an entire family:

(Do you hear that? It's the sound of my mother hitting the floor after fainting from fright. I knew she would ignore my warning and keep reading.)

The good news is that the boys loved it. Emerson had to be dragged out of his seat at the end. And I was finally proud of my unique ride. Mainly because a neighbor stopped to admire it for several minutes and never once called it geriatric.

The bad news is that I quickly realized a single-speed bike is not ideal for a city with lots of hills. That became unpleasantly clear when I had to stop and push my bike up 7th street while a grossly overweight man snorted and huffed past me on his bike.

This leaves me with three options:

1) Sink another $75 into a kit that will turn it into a 7-speed tricycle.
2) Take it to the campus bike shop and exchange it for a real bike of equal value.
3) Give myself enormously muscular legs.

Any votes?

Why is nothing ever easy in this house....

School's out for summer!!

2009-06-01T22:30:00.007-04:00

My final paper is floating around in cyberspace somewhere and I officially have two months off school! That time is already spoken for by too many things to list, but right now I am focused on a 3-week trip to see my family in Utah. Besides the obvious benefit of seeing my friends and family, there is the added benefit that Robbie gets all that time to work on the house uninterrupted!

Since I leave Friday (send positive thoughts that I will survive a plane ride alone with two babies. Or send some strong tranquilizers), Robbie and I have been working feverishly to finish the garden. I will post pics tomorrow, but I am pretty proud of all we've done so far. And Robbie is especially proud that all the neighbors stop and comment on his artful bed-making skills. I thought two rectangles would be good enough, but apparently not for him.

Speaking of gardening, we recently went to a local farm to get heirloom starters and it turned into quite the adventure.

When we pulled up to "Destiny Farms," we saw a large house that had so many strange additions it was almost Escher-esque. We finally found the owners in a maze of gardens, greenhouses, several chicken coops and a couple of ponds. The husband, Mike, his twin sons and the customer he was currently serving immediately swarmed us as we walked up the garden path. I'm used to questions and comments about the boys' albinism, but these people wasted no time in bombarding us with every question in the book. Besides feeling overwhelmed, I was cringing at one boy who kept jumping up and down screaming, "Their eyes are so cool...I want a baby with white hair! I want one of those!" I knew he meant well, so I didn't say anything, but situations like these always make we wonder how I will react when the boys are old enough to understand. Which for Emerson is coming soon.

Anyway, Mike was exactly the kind of guy I picture when I think of small farmers - missing several teeth, smells like grease and manure, wears faded jeans with holes in the knees, has an easy-going manner and of course, has a look in his eye that suggests he's just a touch crazy. In fact, Mike reminded me of a younger version of my late Grandpa - who once owned his own mish-mash of a house and gardens. That's why, despite his lack of tact, I instantly liked him.

He took Robbie around to see the plants and offered him a wealth of information while I struggled to placate the kids. After we loaded up on plants, his wife took us around to see the chickens, including some amazingly beautiful exotic breeds and a few pheasants.

As we drove home in the milky pink dusk, we talked over our adventures that night:

Robbie: Mike told me that he spent a year in a coma when he was younger.

Cassi: How did that come up?

Robbie: I don't know.

Cassi: Did you ask him why he was in a coma?

Robbie: Yes. His response was, "Well, have YOU ever known anyone who's pituitary was crushed?!"

- pause -

Cassi: That's a very strange response. What are you supposed to say to that?

Robbie: I don't know.

That exchange left me laughing and puzzled at the same time. I'm not sure why, but that story seems to explain a lot about Farmer Mike.

In any case, we'll definitely be back next year.

Making a Scene

2009-05-27T03:47:00.004-04:00

This morning we were making our usual frantic attempt to get to Early Intervention on time when Fionn threw the proverbial wrench into the works. First he managed to dump an entire cup of cold water (pilfered from Emerson) into his lap, then he filled his diaper with a noxious concoction. I had just finished getting Emerson ready to walk out the door, so I moaned with the realization that we were once again going to make the walk of shame into school 15 minutes late. As I started to change Fionn's diaper, Emerson decided he wasn't about to let this slow him down. He managed to open the front door and proudly marched down the front steps with the dog close at his heels.

When I saw what was happening, I ran out screaming after him, a naked baby covered in poop dangling from one arm. I managed to get Emerson's arm and drag him back inside, but I saw the back of the dog disappearing around the corner and decided it wasn't worth chasing after her. As I suspected, she was waiting at the front door with her tail between her legs when we reemerged 10 minutes later.

At dinner tonight, Robbie and I started discussing how unfriendly the neighbors across the street are. Most of the neighbors have introduced themselves since we moved in, but these particular neighbors never even make eye contact. As we talked, I thought about the scene we created this morning and realized that may be part of why the neighbors are shunning us. In fact, we tend to make a lot of embarrassing scenes.

For example, I'm sure they often see me sitting in my car in the driveway for hours, reading a book or writing papers - not realizing that I have a perfectly rational explanation for this. Namely, the boys have fallen asleep in their carseats and I'm so grateful for quiet time that I'm not willing to risk moving them.

Or there was the time when Emerson was obsessed with the car, so every day for several days, Emerson would be sitting in the front seat of our car, turning the hazards on and off, honking the horn, etc. while I stood next to him reading theology books and wearing Fionn in the sling.

Or there is the daily scene of Emerson tromping up and down the sidewalk wearing a mismatched outfit, bright red galoshes, sunglasses and a floppy hat - pushing his favorite hot pink doll stroller with a baby doll precariously strapped inside. Meanwhile, I sit on the steps indiscreetly nursing a baby and yelling at the dog who manages to escape from the backyard every five minutes.

I would probably shun us too - we may be single-handedly bringing down the house values in the neighborhood. But you can't put a value on entertainment.

Travel Adventures - And Why Thomas the Train is Super Freaky

2009-05-22T00:30:00.004-04:00

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.

Potty Mouth

2009-05-20T04:40:00.005-04:00

A few weeks ago, Emerson started doing some Hammer-esque crotch grabbing to indicate that his diaper was wet, so I taught him the "diaper change" sign. He has been using it pretty regularly since then, which meant it was time to introduce him to his own potty.

I have been dreading potty training since before Emerson was even conceived. And considering how slowly and painfully he has achieved other milestones, I have no illusions that this will go any better. But to my surprise, at least the initial introduction went better than expected.

We spent the majority of that first day playing with it - all three of us crammed into our tiny bathroom we dubbed "the head" since it gives one the distinct impression of being in a submarine. Without any prompting, he immediately sat down on his throne and let out a satisfied sigh. I cringed at how realistic this reenaction was and thought about offering him a magazine to read. But it did not stop there....

Emerson had to sit on the little potty....I had to sit on the big potty...Emerson had to sit on the big potty...we both had to sit on our respective potties and look at each other...the baby had to sit on the little potty....Emerson had to sit on the little potty while holding the baby....etc., etc.

I made an effort to let him watch me anytime I actually had to use the bathroom that day - emphasizing each part of the routine and letting him flush it down. This ended up being a mistake because over and over again he would drag me to the toilet, jab his finger at me like a little dictator and demand, "Go, go, GO!!!" Maybe in my pregnancy days I could've followed his command on the spot, but now not so much.

Since that day, the potty's magic has faded and now he only occassionally sits on it. I'm not entirely sure he understands the point of it considering 1) he insists on being fully clothed while sitting on it and 2) yesterday he pulled it up to the big toilet like he was pulling a chair up to a table. Then he began to scoop imaginary food off the toilet lid and pop it into his mouth, savoring each bite with smacking lips. I'm pretty sure OSHA would not approve of that.

I'm not going to push this experiment further for now, but I know that day of following him around like he's an untrained puppy, anxiously asking "Do you have to go potty?" is coming eventually. In the meantime, at least our bathroom fun has motivated me to keep the toilet so clean you could eat off it.

The Father of Invention

2009-05-14T14:39:00.005-04:00

A couple of weeks ago I was telling my friend that I wish Robbie and I could switch places because he would love to be a stay at home dad (he thinks anyway) and I don't mind working. Unfortunately, even once I become an ordained minister, I'll never match his engineering salary.

She suggested that we should try to cash in on one of Robbie's many "million-dollar" ideas and then we could do whatever we wanted. I mentioned this to Robbie on the drive home, so we started brainstorming ideas. This naturally led to a conversation about the infomercials that peddle their products by warning about the extreme dangers of pulling an arm muscle by trying to lift a pot of hard-boiled eggs off the stove (The EggGenie - with BONUS Baconwave!) or wrenching your neck while wrapping your hair with a regular towel (The TurbieTwist).

Suddenly, it dawned on me what the world needed next.

"Women are always complaining about cankles, you should figure out something to fix those!"

Robbie shrugged, "That's easy. Just give them oversized shoes."

Pure genius....and he's all mine.

Conference Fun (not an oxymoron in this case)

2009-05-14T13:55:00.004-04:00

We met a lot of wonderful people at the conference this past weekend, including a woman named Heather who played some serious peek-a-boo with Emerson. She posted some great photos of the boys and of the other conference participants on her blog:

Heather Kirkwood

A Terrible, Horrible, No Good, Very Bad Week

2009-05-12T15:13:00.006-04:00

I know I said in the last post that I didn't want to bitch.

I lied.

So last week Robbie went on a last-minute business trip (the first of two this month I might add) and left me alone with both kids for the first time. The idea of being alone with both of them for an entire week has terrified me so much that I actually had my mom fly out from Utah for the last business trip. Yes, I am a wimp.

But to give you an idea of why I was so terrified, the last time I was alone with Emerson for a week and pregnant with Fionn, Emerson decided one night that he was not going to sleep. Ever. After several hours of begging, threatening, soothing and even walking away, he threw a tantrum the likes of which I had never seen. It ended with him purposely projectile vomiting his entire dinner all over his clothing, crib and floor.

This time, I made it through Monday without a major hitch because Robbie's aunt and uncle graciously agreed to watch the boys for four hours while I was in class - giving me enough time to recharge. Tuesday also went well and I was feeling pretty darn smug when Robbie called at 10pm and I could report that both boys were fed, bathed, books read, teeth brushed and fast asleep. But just as I fell asleep that night, I thought, "Don't get too confident this early - that's like thinking you can run a marathon because you made it to the end of your street without passing out."

The next morning, Emerson proved this to be wise advice. An unfortunate event involving his new-found ability to unbuckle his booster seat belt buckle and a pair of footie pajamas ended with him slipping out of his seat and hitting the floor - but not before smacking his giant noggin on our wood table. Looking back, I am still amazed at how quickly an egg-sized black lump appeared on his forehead.

Me, being the cool cucumber I am, scooped him up and preceded to run around the house gasping "oh my god, oh my god" while simultaneously scrolling through my cell phone trying to figure out who to call first, wondering if it would be callous to change out of my pajamas before taking him to the emergency room, and trying to soothe two crying children. I quickly decided to call the pediatrician and then as the nurse came onto the phone and I started to explain the story, I looked down and realized his nose was bleeding on my shirt. I discovered later that he bumped the end of his nose on the table too, but at the time I thought he had hit his head so hard that he was internally bleeding. I immediately felt ridiculous for not calling an ambulance and tried to get off of the phone with the nurse, but she managed to tell me over the crying and commotion that I didn't need to take him anywhere.

She calmly explained that the bruising was a good sign because it meant he wasn't swelling or bleeding internally. I had a hard time believing this, but I followed her instructions to give him some Tylenol and a cold pack and let him rest. I was also supposed to keep an eye out for any unusual behaviors in the next 24 hours. (When I recounted the story to Robbie later on, he burst out laughing at this part. "Unusual behavior - like standing in the corner or putting buckets on your head or doing strange dances? How would we know with Emerson?")

Sure enough, his nose stopped bleeding almost right away and he laid down and took his regular nap. The nurse assured me it was ok for him to sleep, but I left him on my lap and nursed Fionn to sleep so I could watch them both softly breathing. For the first time, I noticed the slim blue vein in Fionn's neck pulsing with every heartbeat as he slept. I sat there watching it for an hour, mesmerized and comforted by this reminder of their vitality.

When all was said and done, Emerson had a giant bruise that shone like a black and blue beacon on the center of his pale forehead. This meant that I got to relive the story over and over every time we went out in public and people pulled out their cellphones - ready to dial CPS.

The rest of the week didn't fare any better - including an incident where I accidentally threw away my license and debit card and didn't realize it until days later when I went to pay for an entire grocery cart full of food (sorry Randazzo's produce market), Robbie forgot to do anything for Mother's Day, and a strange woman decided to offer me unwarranted and unsolicited parenting advice, so of course we ran into her again at the park....just as Emerson and Fionn both erupted into major temper tantrums over the swings.

I recount these events for four reasons 1) to offer birth control for my friends who don't have children 2) to offer reassurance that kids are resilient for my friends who do have children 3) to express my undying respect for single parents everywhere, and 4) to give my children proof that I was a horrible mother when they go into therapy someday.

The bright spot in the past couple of weeks was a two-day trip to Chicago for our first-ever albinism conference! But that's another post for another day...hopefully a better day.

Happy Mothers Day!

2009-05-10T14:43:00.003-04:00

My day is going....poorly. To say the least. But rather than bitch for several paragraphs, I thought I'd republish a tribute that I wrote for my mom last year:

A Tribute to My Mom

I hope all the preggos, mothers, grandmothers, godmothers, and mother-like friends have a wonderful day!

Ahh Spring

2009-05-05T15:32:00.006-04:00

The first seedlings in our "Freedom Garden" - one week old

The view from our bedroom of our yard and the old orchard across the street:

The elderly couple that lived in our house before us were excellent gardeners who planted lots of blooming trees, bushes and bulbs, so I'll have to take more pictures when it hits its full glory

Of course, Spring is the season for rain storms and thus galoshes. But according to Emerson, galoshes are appropriate every day - rain or shine:

This Dedication Goes Out to My Chubby Baby

2009-05-04T13:28:00.006-04:00

Fionn had a wonderful dedication ceremony yesterday at our church - it was a perfect day weather-wise and we were very grateful for the friends and family that made the drive to see it. Of course, seeing it would be more exciting than reading about it, so I planned on filming the whole occasion for those who couldn't make it. But in the rush to get the boys ready in time to pick up the cake for the reception and get to the church, we left the camera at home. (Insert image of me kicking myself - HARD).

Emerson's dedication ceremony was equally beautiful (we had just learned about his diagnosis, so when the minister blessed him with water and wished that his life may "take the easy way," my mother and I and Emerson's Guidemother all burst into tears that lasted the rest of the ceremony). But I was able to compile this ceremony and write parts of it myself, so that added something different.

Fionn was his fat and happy self the whole way through, only grimacing when the ceremonial water was dabbed onto his head. Emerson was less than enthusiastic, however, and squirmed, insisted on sitting down on the floor, tried to crawl away, demanded a drink, etc. until I finally put him back into the pew to sit with his cousin. I wish I had a photo of the look on his face when the Director of Education got to his portion of the ceremony and addressed him directly - through a microphone. He froze in place and his eyes got so wide I swear if his hair wasn't already white it would've turned white then!

For those who are interested, I will copy the ceremony below. Thank you again to everyone who made it such a perfect day!

Fionn’s Ceremony

Introduction: In presenting your child in this service of religion that he may be named and recognized by this church family, you are thereby taking a step as parents in the assumption of moral responsibility. Let your child learn from your lips and your life how lovely is the path of virtue, how noble it is to become an apostle of truth, how holy it is to sacrifice oneself, if need be, for the good of others.

The great end of parental care, as William Ellery Channing observed, “is not to stamp your minds upon the young but to stir up their own; not to make them see with your eyes but to look inquiringly and steadily with their own; not to form an outward regularity but to touch inward springs; not to burden memory but to quicken the power of thought, so that they may learn and approve for themselves what is everlastingly right and good.” (Lon Ray Call)

Presentation of the Name:

Today we dedicate Kepler Fionn. Fionn is a Gaelic word meaning “white” or “bright.” It’s also the name of the famous warrior in Irish mythology, Fionn Macool, whose hair turned prematurely white as a child. Just as the mythological hero was brave in defending his homeland, Fionn’s parents wish him courage and strength as he faces the challenges ahead.

By recognizing Fionn’s name publicly, we declare that he is an individual – a unique and separate person with a dignity and life of his own. We will respect his individuality and in turn teach him to respect the interdependent web of life.

Presentation of Flower: Robbie and Cassi, you come with Fionn out of reverence for the mystery of life that you have seen in the birth of your child. In this dedication ceremony we give Fionn a flower. The flower symbolizes the beauty of Fionn’s young life. The flower also symbolizes the meaning of this dedication, for whether a flower is beautiful or not, whether it comes into full bloom or not, whether it fulfills itself or not depends on the nurture it receives. No flower grows alone, apart from the sun and rain and soil in which it grows. So too, no child grows alone.

Presentation of Water: In this dedication ceremony we bless you, Fionn, with water. Water symbolizes the meaning of your life to come. As water seeks the path of least resistance, may your life too, be filled with the easy way. May you rest in low, shaded valleys, and may you rush energetically through the many channels of life's experiences that await you. Like this water, may you be source of life giving energy to all whose lives you touch.

To The Parents: Robbie and Cassi, as parents of this child do you solemnly promise, that to the best of your abilities, you will instruct and train Fionn in the principles of right living?

Parents Respond: We do.

Do you promise that you will help Fionn to be a fearless, impartial, and reverent seeker after truth, beauty, and goodness?

Parents Respond: We do.

Will you affirm that Fionn is a sacred responsibility, as well as the embodiment of your love for one another? Will you dedicate yourselves anew to that way of life which will fill Fionn’s heart with memories of gladness and a sense of compassion for all others who travel life's wondrous journey?

Parents Answer: We will

To the Sibling: Emerson, as Fionn’s older brother, you will be the role model he looks up to. Although you are too young to understand now, your bond with your brother will be everlasting - continuing long after your parents are gone. May you always be united by respect, love and compassion for one another.

To The Guideparents: Jacob and Dung (pronounced YOUM), in consenting to become Guideparents to Fionn, you carry on an ancient custom. Will you continue to bear in mind your promise to befriend and guide and help Fionn as the need should arise?

Guideparents Respond: We will.

Charge to the Congregation: The minds and hearts of infants are as open to the wonders and worries of the universe as a vulnerable flower in bloom. As the essence of religion is to shape the person into someone whose heart and mind is aware of both but seeks wonder foremost, will you, as a congregation, commit yourselves to imbue in Fionn the values that shape our free, liberal, religious tradition? If so, say, "We will."

Congregation Responds: We will.

Charge to the Young People: As young people who have attended this church, you understand Unitarian Universalist religious values. Will you now pledge to Fionn that you will be an example for him, helping him to be a good Unitarian Universalist, and that you will do what you can to assure he receives the same love and friendship from this church as you do? If so, say, "We will."

Young People Respond: We will.

Closing: We close this service of dedication with thoughts of a future centered around Fionn and coming from a past that encompasses our own childhood. Let us aspire to keep from our past all that was good so that Fionn may grow from that starting place. And let us work at making the present an abundant source of excellence from which Fionn may develop a life rich and magnificent for all to behold.

In the words of Kenneth Patton:

Nothing is strange to the child for whom everything is new.
Where all things are new nothing is novel.
The child does not yet know what belongs and what does not;
therefore for him all things belong.
The ear of the child is open to all music.
His eyes are open to all arts.
His mind is open to all tongues.
His being is open to all manners.
In the child’s country there are no foreigners.

(From This World, My Home by Kenneth Patton)

For Those Who Come After Us

2009-05-02T17:40:00.004-04:00

Fionn's dedication ceremony is tomorrow and my minister asked me to arrange the ceremony, so I spent a portion of yesterday pouring over quotes and readings about children. I came across this reading, which summarizes perfectly how I've been feeling lately (although it's too dark to include in the ceremony):

"We pray for those who come after us, for our children, and the children of our friends, and for all the young lives that are marching up from the gates of birth, pure and eager, with the morning sunshine on their faces. We remember with a pang that these will live in the world we are making for them. We are wasting the resources of the earth in our headlong greed, and they will suffer want. We are building sunless houses and joyless cities for our profit, and they must dwell therein. We are making the burden heavy and the pace of work pitiless, and they will fall wan and sobbing by the wayside. We are poisoning the air of our land by our lies and our uncleanness, and they will breathe it.

"We have cried out in agony when the sins of our fathers have been visited upon us. Save us from maiming the innocent ones who come after us by the added cruelty of our sins. Help us to break the ancient force of evil by a steadfast will and to endow our children with finer ideals and nobler thoughts. Grant us to leave the earth fairer than we found it; to build upon it cities of hope in which the cry of needless pain shall cease. May we be granted a vision of the far-off years as they may be if redeemed by us that we may take heart and do battle for our children."

From For Those Who Come After Us by Walter Rauschenbusch

Fat Boy Fionn VS the Carrots

2009-04-30T18:31:00.006-04:00

Neon puke, stinky diapers, hours of puree-ing here we come.....

The News from Binerville

2009-04-30T14:12:00.006-04:00

A few weeks ago during Early Intervention, Emerson's OT was making him do one of his least favorite activities: play in the sand. Just like the paint and playdough in the past, she was slowly getting him to touch it using equal parts creativity and trickery. After limited success on this particular day, we tried an equally frustrating session of painting (the paint was fine - it was the rolled sleeves that drove him nuts), followed by a struggle to get him to wash his hands in the sink. When the OT asked me if he had any other tactile sensitivities, I responded, "Brushing his teeth, washing his hair, putting on sunscreen, (recently) swimming in pools, and touching stuffed animals."

She sighed and handed me a paper booklet, "Fill out this sensory profile for me and we'll create a plan from there."

I calmly said OK and took the paper, but inside I let loose a string of curses. "Oh bloody hell. Here we go again."

Luckily, the results did not create a new diagnosis as I feared, and we have gotten some helpful tips from the OT. He has made steady progress, which is encouraging except that the therapist implied none-too-subtly that a parent's over-emphasis on cleanliness could be a major contributor to the problem. She is right of course, but I have to say I was quite happy with the overly clean little man I had created. I had great hopes for his future spouse - but alas I'm being forced to give that all up so that he can one day create masterpieces out of sand and playdough. Nuts.

On a similar note, I got some interesting news from the school when I finally pushed the issue of getting Fionn's Early Intervention started. I know other parents of children with albinism are probably aghast that I waited six months to get things moving, but honestly, he's on target for all his developments and gets plenty of visual stimulation from an older brother, so I haven't been in a rush. I was dreading this conversation because technically siblings aren't allowed at therapy appointments, so I have been racking my brain trying to figure out how to pay for childcare for whoever wasn't getting therapy on that particular day.

When I mentioned this concern during the conversation, the therapist said, "Oh, that won't be an issue. Emerson will be starting preschool half days for four days a week in the Fall, so Fionn can have his weekly appointment during one of those times."

Say what?!

For sixteen hours a week the school is going to watch and teach my child for free? My mind swooned in the glory of so much free time while my heart lurched at the idea of Emerson being so old and independent. I knew that when he was 2 1/2 he would transition to a new program, but I've been dreading the resulting paperwork and special ed lingo so much that I hadn't researched what this would really mean.

Now when I think of it, I do a little happy dance

In other news, Emerson has added some new signs and a couple of words, has decided that following older kids around may be the coolest activity ever, and - thanks to some practice with large groups in Texas - we took him to the insanity that is the mall playground and he didn't shed a tear.

I still get frustrated when I see my friends' 2-year-olds counting to ten, repeating entire songs and books by memory, potty training, etc. because Emerson is nowhere near any of those things. But it is what it is.

The other day we were talking with some friends about breaking all the parenting "rules" and Robbie said (completely joking of course) "Yeah, I mean they say breastfeeding makes kids super smart and Emerson was breastfed for a full year, but look at him." We all turned to look at Emerson, who coincidentally was standing in the corner with his face pressed against the wall. The group of us erupted into laughter at this humorous if unfortunate timing and Emerson was blissfully unaware of what happened except that he made us all laugh.

(By the way, he was doing this because he's spent a lot of time in the "time-out" corner lately and to show me how little effect it has on him, he frequently puts himself in time-out while laughing hysterically. But that's another post.)

Fionn is the complete opposite of his brother in almost every way. While Emerson was very shy and stoic around strangers as a baby, Fionn is all slobbery smiles and reaching out for people to hold him. While Emerson could have cared less about solid foods for months, Fionn watches every bite that goes into our mouths like a starving Oliver Twist and he devours everything we give him (see video to come). Fionn is ready to touch everything and anything - jump into any activity with enthusiasm while Emerson never does anything without forethought and hesitation.

Emerson has proven to be one of the sweetest and most interesting children I've ever seen, but Fionn's ability to be an "ordinary" baby is equally exciting in its own way.

On a final and yet unrelated note....after my last post, my mother questioned whether Zen masters were a good comparison for my children. "I thought Zen masters led by example, by being calm and Zen-like all the time, in which case I'm not sure that applies to the kids."

"Well, I once learned about a group of Buddhist monks who beat their students with sticks to keep them alert and focused," I said.

"My children are those kind of Zen masters."

Little Zen Masters

2009-04-23T11:48:00.002-04:00

As we were driving home last Sunday, I heard a story on NPR about the power of meditation. The guest was a man who had written several books on the topic - including "Mindful Parenting." When the interviewer asked him about children, he talked about the life of a parent being as challenging if not more so than monks who devote their lives to secluded contemplation. He called children "little zen masters" because of the way they constantly challenge us. I sort of drifted off in thought about this, so I didn't hear his follow up (how's that for being mindful?), but my own experience definitely supports his comparison.

They challenge us to live in the moment - allowing us to relive the wonder of each new sight, smell, sound and person. They challenge the limits of our patience (OH how well a 2-year-old can do this), and they challenge our perceptions of ourselves in profound ways.

After the story was over, we stopped at the grocery store and Robbie ran in with Emerson to pick up a few things. I pulled out Fionn to feed him, and then propped him up in my lap to look around. It was dark except for the parking lot lights and raining softly. I focused on being present for this moment, noticing how the water running down the windshield reflected on Fionn so that his face looked like a moving sea. I noticed how clear his violet eyes seemed, how sweet his perfect bow-shaped lips were, how much I loved the soft gurgling and cooing noises he made.

Then Robbie swung open the back door, the overhead light blasted the scene with a harsh yellow light, and a screaming Emerson plopped into his car seat. He was overly-tired and apparently not placated by anything we could offer, so we listened to him scream the rest of the way home and well into the bedtime routine.

Zen masters indeed. Children certainly have the potential to teach and challenge, but I'm afraid that when it comes to my own little Bodhisattvas, I'm no where near Nirvana.

Birds of a Feather

2009-04-21T18:30:00.005-04:00

Part 2 - A Green Easter

2009-04-14T17:00:00.006-04:00

As I recently mentioned, I am one of THOSE people right now, so naturally I decided the Easter Bunny was going green this year. We hosted an Easter egg hunt and lunch for our friends and family at our new house, which meant I could impose my wonderful idea on everyone else as well.

Nothing terribly fascinating happened at the party (ok, maybe one slightly interesting thing, but that's not my story to tell) - we had a wonderful meal with wonderful people

Emerson and his little friend Keagan perfected their egg-hunting skills

the adults had a successful (albeit less competitive than in previous years) egg hunt for themselves; Robbie got an excuse to use a blowtorch in the process of glazing the ham; and he took home the egg-cracking game championship

I promised some people that I would share what green ideas I found, so here's a rundown of what I did:

(This blog had a lot of good suggestions)

For plastic eggs, I reused several from previous years as well as purchased a big bag of second-hand eggs from a thrift store that should give me enough to last a long time.

I purchased baskets from the Salvation Army for the kids and for decorations.

Instead of traditional candy, I opted for some organic fruit-based gummi bears and jelly beans from Whole Foods. While I missed my sweet sweet Peeps, the organic candy was incredibly good. I also filled some eggs with fun-size Fair Trade chocolate bars.

For the kids, I filled some of the eggs with candy and other eggs with a coupon for a prize. I chose some little inexpensive instruments from Ten Thousand Villages, reusable water bottles, stickers, and some re-gifted small toys. Other great ideas I've heard from parents recently include homemade bubbles, sidewalk chalk, pocket change, homemade play dough, homemade baked goods, etc.

For the adults, I tried a complex system that would have worked except some last-minute cancellations sort of threw the whole thing off. Basically everyone ended up going home with a small prize, which included things like: Natural Home magazine, seed packets, reusable grocery totes, large Fair Trade chocolate bars, natural soap, etc. The only non-green item was a bottle of Chocolate Stout, but I suppose if I hadn't run out of time I could have made that better by getting a local label.

For food, we bought mainly organic (I won't lie, the half ton of velvetta cheese in my mom's famous au gratin potatoes doesn't even qualify as real food much less organic, but it was for the sake of tradition). The best part was the ham, which we managed to find locally from a meat hawker at Eastern Market.

Today I was reminiscing with my mom over the phone about Easters past and she reminded me of a couple more ideas I'm going to try in the future. One was to dip a cut-out of a bunny paw print in brown or white washable paint and "walk" the prints up and down tile floors or cement walkways so it looks like the Easter Bunny truly did visit. I know I have friends who will consider this traumatizing and/or twisted, but my mom did it for me and my sister as kids and we thought it was amazing.

She also once made us biodegradable baskets by inflating a balloon and then wrapping a large ball of string around it until it was coated. Then she covered the whole thing with sugar water and let it harden. Like papier mache, she popped the balloon and then cut out a hole so it looked like a giant Easter egg that could be filled with candy and other goodies.

These ideas only reinforce two things I know about my mother:

She is very crafty
She never slept

I hope everyone had a wonderful Passover/Easter/Spring Solstice!

Easter Weekend - Part 1

2009-04-14T14:40:00.007-04:00

Saturday morning was one of those mornings. You know, the kind where it's physically painful to peel your eyelids open and you keep coming up with seemingly logical reasons why you should continue to hit the snooze button. Until you finally come to and realize that not only are you now late, but those "logical" reasons for sleeping were actually jibberish.

Our best intentions were to arrive at the Georgia Street Community Garden's Easter event an hour early so I could get some quality volunteer work in. Unfortunately, by the time we dragged two equally sleepy and stubborn children out of bed, got them dressed and sunscreened, and drove the hour to Detroit, that hour was long shot.

Luckily we at least arrived in time for the event, which was an egg hunt followed by breakfast and entertainment. Their version of a small child's egg hunt was brilliant - scatter eggs in an open field and let them go at it. Emerson, still sleepy and grumpy, was clearly wondering why the hell we were making him stand in the cold and pick up plastic eggs. After a couple of demonstrations, he dutifully placed two eggs into his basket, declared "all done" and climbed back into Robbie's arms.

The organizers did a great job arranging gift bags for all the kids along with eggs full of candy, so even a handful of eggs was more than enough for him. He protested when we sat him down to inspect his haul, but then I bit into a jelly bean and put it in his mouth. It was like a drug addict getting his first hit.

"Mmmmm." he crooned, pink drool oozing down his chin.

And thus he became an instant fan of Easter.

The best part of the event was meeting the people involved with the Garden, such as the founder Mark "Cub" Covington. He's one of those people who just exudes warmth - the kind of person you can instantly believe in. He rushed around greeting visitors, handling event minutiae and giving interviews to the local press, keeping a smile on his face all the while.

We also met Tammy, a board member and volunteer for the Garden. She told Robbie about their new community center across the street - a vacant storefront that until recently had served as a haven for crack addicts and prostitutes. In fact, as they were cleaning it up for its new purpose, they apparently found one such prostitute inside and had to literally run her off.

We also met countless other volunteers and supporters who only reinforced the kind of energy and creativity that can be found in Detroit. My measly contribution to the event was to stir some pancake batter (and even that I managed to botch by spraying myself and a sleeping Fionn with said batter), but I'm looking forward to getting my hands dirty in the garden this summer.

Robbie made several friends when he attempted to teach some boys how to fly a kite. I walked up just as it soared triumphantly into the air...before swan diving into the closest tree. They managed to get the now mangled carcass down and Robbie pulled out his best Macgyver moves, replacing a broken bar with a twig. The boys' commentaries during all this had us rolling with laughter.

When we got home, Robbie started brainstorming ways to get involved with their outreach programs for kids. I hope he does it - his ability to connect with kids is one of the reasons I adore him.

After the event wound down and Emerson was practically comatose, we drove around getting to know the area better. Several minutes passed and it became clear that Emerson was not going to sleep (probably due in large part to the high amount of sugar he consumed), so we stopped by Eastern Market. We've wanted to go to this ever since we moved to Michigan, but our track record for getting up early on Saturdays is less than stellar.

Now I realize the trip is well worth the lost sleep. Even though it was a smaller winter version, tons of shoppers and vendors packed into a giant shed and spilled out into the walkway. You can buy everything there: vegetables, fruits, honey, meats, herbs, lotions - you name it.

More than anything I loved the visual spectacle of it all - a hefty woman wearing the gauzy white bonnet of a Mennonite selling freshly baked pies and breads...young men bellowing out the prices for asparagus and strawberries like carnival barkers...Easter lilies and hydrangeas lined up like soldiers, their heads nodding softly in the breeze.

We got some things for Easter dinner and some apples for Emerson to snack on, but we're looking forward to going back next month for garden supplies and even more local food.

All in all, it was a pretty amazing day. Now if only I can remember that on future weekend mornings so I can ignore the voice in my head that whispers "reach for the snooze."

Another side of Orson Welles

2009-04-14T00:11:00.000-04:00

PLEASE read this book

2009-04-13T15:26:00.004-04:00

If you find it wasn't worth the fast read, I'll personally come to your house and clean your toilets...or whatever else you might have done with that time. Within the bounds of decency of course.

the website: Ishmael

FestiFools

2009-04-13T09:38:00.006-04:00

One of the great new traditions in Ann Arbor is an annual parade in honor of April Fool's Day called FestiFools. The parade features giant puppets made by UM art students - in addition to Townies willing to dress up and join in.

This year we went with Robbie's ex-cousin-in-laws (don't ask me to explain) and their four kids: Cadence, Lake, Pace and Tate.

Despite being a gray and wet day, the turnout was huge and the older boys had a blast getting random things handed to them like a rotting eggplant from a man dressed up as...an eggplant. Emerson unfortunately could care less about parades, so he spent half the time eating crackers in his new wagon and the other half asleep on Robbie's shoulder. The best laid plans...

After the parade, we stopped by a friend's house to introduce the older boys to their chickens. The boys reached out a tentative hand to stroke their honey-colored feathers, then chased them into their chicken coop giggling madly all the time. They eventually added a chicken feather and freshly laid egg to their eggplant and candy from the parade, so they were proud of their eclectic loot.

Emerson could care less about the chickens, but he did enjoy being pulled around in his wagon like a little sultan in a gilded carriage.

Of course, Robbie had to pimp out the wagon with some carefully chosen bumper stickers:

Cheating Death, Cheating Life

2009-04-07T22:54:00.009-04:00

Last night I got home from school at eleven and found a red-eyed, sniffling Emerson waiting for me at the front door. Apparently he had been crying for me for the last ten minutes, so I bent down to give him a kiss and listened to the string of babble that was the story of his evening. Then he wrapped his body around me in a koala hug and I carried him upstairs to bed.

After we giggled our way through a couple of books, I turned off the lights and snuggled in (we always stay in his bed until he falls asleep). As I lay there - listening to his breath get slower and feeling his cold feet poke around for a warm spot in the crook of my knees - I couldn't stop the stream of thoughts rolling through my head.

I thought about the NPR story I heard on a man who successfully predicted many of the major modern technological advances (such as the internet) before they happened. His prediction for our future now is that by 2045, humans will have merged with their technology and we will likely be able to overcome death itself. A lot of this prediction is based on computers so small they can go inside our brains and even blood streams, which - according to him - we are not far from right now.

I thought about the class on ending oppression I had just been in - especially the image of my teacher with his arms stretched out in a circle as he said, "This is the pie. When you get a raise at work, you praise God. But in order for you to have more of the pie, someone else has to have less. Your wealth is putting poor people in an early grave, do you think that's what God wants? How far are you willing to go to keep the poor from heading to early graves?"

(And keep in mind this is at the conservative ecumenical seminary in Detroit, not my liberal school in Chicago.)

I thought about the book I was reading on the environment. Even though it was written 10 years ago, it warns of the current ecological crisis and the disastrous results of waiting too long to make changes to save the ecosystem. I wonder if the author has keeled over from a coronary after witnessing what's unfolded in the 10 years since he published this book?

When I think about all these things, I can't help but feel humanity is like a ball catapulted into the air. In the history of the world as we currently know it, our existence has been short and our rise fast. And like a ball, we seem to be gathering speed with time. But now we are nearing the end of the arc, we are about to reach impact. What I don't know is whether that impact will be in the form of a positive, peaceful revolution of sorts, or something...catastrophic.

I am no philosopher by any stretch of the imagination, but I'm struggling with these ideas and feelings because laying in the blue glow of a toddler's nightlight, watching his dinosaur pajamas softly rise and fall, I feel completely responsible for bringing him into this world. I feel completely responsible for ensuring I did everything I could to create a future worthy of him and his brother...and every other child in the world who has parents watching them sleep and worrying about their future.

And yet I don't know what to do. I do things in fits and starts...I get motivated, inspired, energized...then I get discouraged, lazy, complacent.

Right now I am struggling to stay somewhere around the energized part of this cycle, which means I am being extremely annoying and self-righteous to everyone around me. Hopefully they will be patient with me and try to see what I see:

A tiny hand wrapped around my one finger. Holding on tightly....expecting.

Monday Musings

2009-04-06T14:29:00.004-04:00

When I was in the eighth grade, I had a geometry teacher named Art Hunter. He was a tiny man in his 60's or 70's with cheerful eyes and a head of thin gray hair cropped into a military buzz cut. I'm not sure how it started (and I won't venture a guess in case someone incriminates my memory), but somehow I started writing a daily quote on the white board at the beginning of each class. I don't know how this started, but I do know why I kept doing it - it had the double benefit of getting him to share witty stories and his thoughts on life, as well as taking up much-hated math time.

By the end of the year, I knew very little about geometry, but a lot more about life thanks to Mr. Hunter. In addition to discussing quotes each day, he had a host of memorable nick names for me, including "squints" (this is when I discovered my contact prescription wasn't strong enough), "veg-head" and "carrot-top" (he found endless joy in teasing me about being a vegetarian), and Cassiopeia (along with thousands of other variations on my name). I adored that man.

I sometimes wonder if he's still around my hometown, but seeing as he was already advanced in age in middle school, I'm afraid to do research and discover he has passed away.

I'd prefer to imagine him still out there, teaching and teasing another class of students. And in honor of him, I thought I would randomly share some interesting quotes as I find them.

Here's one I've been chewing on today, from Martin Luther King's sermon entitled "I See the Promised Land," given on the eve of assassination:

It's alright to talk about "long white robes over yonder," in all of its symbolism. But ultimately people want some suits and dresses and shoes to wear down here. It's alright to talk about "streets flowing with milk and honey," but God has commanded us to be concerned about the slums down here, and his children who can't eat three square meals a day. It's alright to talk about the new Jerusalem, but one day, God's preacher must talk about the New York, the new Atlanta, the new Philadelphia, the new Los Angeles, the new Memphis, Tennessee. This is what we have to do.

After the Apocalypse or An Ode to D-Town

2009-04-01T09:40:00.014-04:00

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.

2 thumbs up.

2009-03-27T22:12:00.001-04:00

In the Land of Lollipops

2009-03-27T09:36:00.010-04:00

A couple of weeks ago, Robbie and I were sitting on the couch eating pudding and watching "The Biggest Loser" (that show always makes me hungry). Suddenly, the pudding triggered a memory and I burst into a fit of giggles. Robbie of course wanted to know what was so funny, so in between my microbursts of laughter, I attempted to tell the story.

"When I was little, my mom once let me take a bath in pudding."

"WHAT?! No she didn't!"

"Yes she did! It wasn't a full bathtub, but she made several packets and put it in a big pile on one end of the tub."

"That does not sound like your mom at all."

"I know, that's part of why it was so awesome!!! A friend of mine got to do it, so I asked my mom if I could do it too and I was really surprised when she agreed."

"Your mom would never let you do something that messy."

"It wasn't that messy - all she did was turn the water on and rinse it all down the drain afterward."

Robbie gave me a look that clearly said he wasn't buying this.

"Why would I make this up? I will call my mom tomorrow and prove it to you!"

He shook his head and made some derogatory comment about my memory.

"Oh, and when has my memory failed me before. Name one example."

I was getting downright indignant now.

"Um, how about the time you tried to convince me that you once caught a fish with nothing but marshmallows tied to the end of a string on a stick?"

I pursed my lips together tightly in an attempt to look strong while fighting back laughter. He had dealt a damaging blow on that one - when we first got together I made the mistake of relating this fishing story and he enjoyed recounting it to everyone we met for months afterward. I quickly realized that pulling a fish out of the water with nothing but a marshmallow defied the laws of nature, but out of spite, I refused to back down.

Finally, we went on a fishing trip with a friend and Robbie challenged me to reenact my angling feat. I stared so hard at that limp fishing line, willing a fish to prove me right, but it didn't budge. In my defense, we didn't have any marshmallows.

Also in my defense, I was defying a man who - along with his father - spent months trying to convince me that his grandpa trained monkeys to drive trucks. The piece de resistance was when his dad found a photo of a monkey standing on a tractor with its hands on the steering wheel. "They have to start their training somewhere," Robbie insisted.

But back to the pudding.

The next day, I called my mom, anxious to be vindicated. After recounting the story, there was a pause on the other end of the line.

"No, I never let you take a bath in pudding!"

I couldn't believe what I was hearing.

"I let you finger paint in it while you were in your highchair, but I would never spend that much money to let you bathe in it!"

"But it wasn't a full bathtub - I remember being slightly disappointed about that. If I was going to make up a memory, wouldn't I imagine an entire bathtub full?!"

We argued for a few more minutes and then I gave up. "I'm going to call my sister - she will remember."

I knew she was at work, so I sent her a text message. Several hours later, I got a message back saying, "Yes, I remember the time mom let you take a chocolate pudding bath." I gave out a triumphant yelp and did a victory dance as I read the message out loud to Robbie.

After I calmed down, I sent her a message thanking her for giving me proof. I gloated for the rest of the day, but the next morning, I woke up to find this message:

"Proof of what? That you're delusional?"

Now I was confused. I went back to the original message and quickly realized I hadn't scrolled all the way down. This was the full message:

"Yes, I remember the time mom let you take a chocolate pudding bath, that was the day after we ran through the candy cane forest and climbed gum drop mountain."

Damn.

A few days later, Robbie recounted this whole story with glee to a friend of ours who's getting her Ph.D. in psychology. When she stopped laughing, she told us about a study on memory where researchers got parents to share stories about their children's early years. Then the researchers would tell the stories back to the adult children, mixing real memories with fake ones. At first, the adult children wouldn't remember the fake memories, but a few days later, they brought them in and questioned them again. By this time, they had fabricated the details of the fake memories - completely convinced that they had actually happened.

I saw her point, but I can't let go of the fact that I wouldn't fabricate a memory about a bathtub with a big pile of pudding when I could have fabricated a memory about an entire bathtub FULL of pudding!

I don't care what my family thinks - maybe I didn't climb gum drop mountain or lure a fish out of the water with a marshmallow. But I DID take a bath in pudding.

And it was awesome.

Get Down with Your Bad Self

2009-03-23T23:39:00.005-04:00

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

2009-03-21T00:35:00.004-04:00

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...

Scenes from Daily Life II

2009-03-13T22:18:00.008-04:00

Robbie: Is that a rutabaga in our backyard?

Cassi:(sheepishly) uh.....yes.

Robbie:How did it get there?

Cassi: uh.....I sort of rolled it out the dog door a few weeks ago.

Robbie pauses for a moment to take this in.

Robbie: Why?

Cassi: Well, that extra one you bought a while back ended up going bad and I felt guilty for wasting it. Since we don't have a compost pile yet, I thought I would roll it out into the snow and it would eventually decompose.

Robbie: Do you know how long it will take a rutabaga that big to decompose, especially in the snow?

Cassi: No.

Robbie: A long time.

Cassi: Well, Janet said she throws her food waste straight into her yard during the winter.

Robbie: But at least Janet has a private backyard - not a backyard with a chainlink fence and only a few feet away from the neighbor's door!

Cassi: Point taken.

This conversation occurred a few weeks ago and every time I think about it now, it makes me giggle. Mainly because it contains the word rutabaga, which is inherently funny. I did eventually remove the offending rutabaga from the yard when the snow melted (along with a huge amount of dog poop of various bright colors and textures, depending on what object Kenya had eaten that day. Our poor, poor neighbors.)

Sure rolling a large vegetable out a dog door seems silly, but in my defense 1) Pregnancy and breastfeeding remove brain cells 2) I'm sleep deprived and 3) Just yesterday I read an article in Sierra Club magazine about a guy who made a compost bin, but it got infested by rats - so he tried vermicomposting (worms) and it got infested with fruit flies. As a last resort, he started packaging food waste in newspapers and putting them in the freezer without telling his wife.

So Robbie...it could be worse.

The Dulce de Leche League

2009-03-12T01:07:00.006-04:00

As I've mentioned in previous posts, Ann Arbor is bursting with babies these days (perhaps it's the liberal response to the Duggars?). I had the extreme pleasure of sharing my last pregnancy with two of my close friends and neighbors. Per was born in September, six weeks later Fionn was born, then 5 weeks later Jane was born. Together we - along with another neighbor who have a daughter Emerson's age - formed what we called the "Dulce de Leche League" because we spent this past year eating a lot of caramel ice cream and talking about babies and breastfeeding. If I had more energy and creativity I would come up with a drawing of us as superhero moms - breastfeeding with one hand and eating ice cream with another, but pictures will have to do.

Oh, Matt....that baby is going to hurt when it comes out. I should know.

Boys Will Be Boys

2009-03-10T15:20:00.009-04:00

Excuse me for a moment while I get on my high horse. *HUFT* Ok, I'm up.

So for the past couple of months, I've been going to a speech class for Emerson on Friday mornings in addition to his Early Intervention 2x a week. Emerson goes into a room with the other toddlers (interestingly, all boys) to play while the parents sit in an adjoining room and take a class on how to encourage our children to speak more. So far it has been less than revolutionary, but at this point I'll try anything.

A few sessions ago, the teacher was stressing the importance of pretend play and she gave the example of giving your child a baby doll so they could pretend to take care of it. Suddenly, this woman started bellowing, "Whoa! My child is a BOY and his father will NOT allow him to play with dolls!"

The teacher gave her a pinched smile and said, "Could he have a teddy bear or other stuffed animal?" The woman looked doubtful. "He pretends to feed and take care of his trains - does that work?"

The teacher thought about this for a moment and then said, "No, I think it needs to be something a little more....lifelike. Something they would actually feed and take care of."

At this point, another woman chimed in: "My husband won't let my boys play with dolls either, so we use those plastic Little People instead. It's hard because they're so small, but you can make it work."

The teacher nodded in agreement and moved on to the next subject, but I was left biting my feminist tongue until it bled. The lesser side of me wanted to scream out, "First of all, YOU are the stay-at-home parents, so get a spine, buy a baby doll and tell your husband to stuff it if he complains. Second of all, heaven forbid we should let our sons learn how to be good parents and nurture their babies! We should ban all dolls from our house - at least until they come out with 'Beer Gut Bob' or a life-size 'Chauvinist Charley.'"

I mean, the poor kid is pretending to feed trains for pity sake, it's not going to suck all the testosterone out of him the moment he picks up a fake baby. Every toddler I know is in or has been through a stage where they want to take care of a baby doll. The girls tend (key word being tend) to continue playing with dolls long after, while the boys tend to lose interest after a few months and move on to something else. Those who don't move on on their own are usually forced to by the men in their lives and by the messages they receive from our culture.

In some ways I'm frustrated with these women because they're the same ones I hear complaining about how little their husbands help around the house and with parenting, yet here they are perpetuating the cycle with their own sons. However, I am sympathetic with how hard it is to buck the general culture when all you want is for your child to fit in and make things "easy" for them.

I had big plans during pregnancy for all the avant garde things I was going to do with my future children - all the ways I was going to parent that gave the middle finger to restrictive social norms. When the boys were born with such a physically apparent genetic condition, though, I found myself tempering my own agenda with a need to help them fit in. Maybe it goes back to some animal nature when blending in with the pack kept our children from being eaten by the lion, but I do recognize it's a normal parent instinct.

That being said, we're not being chased by lions anymore and some norms are just plain damaging in this femi-nazi's opinion.

Few days go by that I don't think about how much I miss the fantasy daughter that never was - the little girl I dreamed of having since I was a little girl. I mourn that I will never show her all the different definitions of femininity and help her feel empowered by who she is. I mourn that I will never teach her about Amelia Earhart or Queen Elizabeth or Alice Paul. I mourn that I will never help her through her first period, go with her to pick out prom dresses (or pant suits if she leans that way), and I will never be able to help her through her own pregnancies and births.

But sitting in that class listening to a discussion on baby dolls did remind me of all that I can do with my sons. I can't wait to teach them how to cook (well, maybe Robbie will take that one), clean the house thoroughly, write thank you notes, pick out thoughtful gifts, talk about their emotions, cry when they need to cry, change a baby's diaper, say "excuse me" after emitting bodily noises (I've given up on trying to prevent the bodily noises in the first place), dance all the basic ballroom steps, make romantic gestures for their future spouses, appreciate (or at least tolerate) the arts, and fight against social injustices of all kinds.

I'm sure I'll fail in some areas, but I have to at least try. And I'm lucky to have a husband who is secure enough in his own masculinity to help me. He's the kind of man who can rebuild a car engine and then play "peek a boo" - the kind of guy who can barbecue large amounts of meat and then go antique shopping.

Between the two of us, with all our faults and strengths, hopefully we can produce two secure, well-rounded men who don't feel like they have to fit some hyper-masculine ideal to fit in. If their future spouses never utter the words, "Didn't your mother ever teach you..." my life's mission will be fulfilled.

For now, I love that Emerson will occasionally pick up his baby doll and carry it around the house patting its back like he sees us doing with Fionn 23 hours a day. I love that he is fascinated with cooking and frequently feeds me his latest pretend creation. And I love that when his brother cries, he puts his pacifier in his mouth, plays peek-a-boo with him, or even gives him a kiss. And so far, his man parts have yet to fall off as a result.

Ok, I'm done ranting now and will dismount my horse. *THWUMP* I'm down.

Baby Belly

2009-03-06T14:23:00.004-05:00

So the other day I was having a "bad body day." You know, the kind of day when you catch a glimpse of yourself in a mirror or store window and you realize that you're wearing unflattering pants or your hair has been sticking up for hours. Well, I caught a glimpse of something every mother dreads - muffin top.

Don't get me wrong, I'm EXTREMELY grateful that I've been able to lose most of the weight from both pregnancies. But a number on a scale does not reflect the amount of damage done during pregnancy. To add to my insecurity, Emerson has decided that playing with my belly is a fun new activity. He randomly walks up behind me, pulls up my shirt and starts to poke, squish, pinch and even pull my skin out several inches (to my amazement and horror). The other day he kissed it as if it still had a baby inside. Between that and the stretch marks that decency won't allow me to show, it's a daily reminder that things just aint what they used to be.

Just when I was feeling at the peak of my muffin-top despair, I got online and saw this post from Her Bad Mother: Truthiness in Muffin-Top Portraiture

AHH, honesty. Inspired, I decided it was time to accept my own flab fate and add to her collection of bellies (admittedly, I chose muffin-top restricting pants for these pictures. The poor lighting is a result of a crappy camera.)

Before Emerson was born, I realized that of all the joys and woes of pregnancy, what I thought about most was the loss of sexiness. Sure, my husband still thought I was sexy at my biggest, and I suppose I was in a certain "fertility goddess" sort of way. But I realized that in recent years, the importance of being sexy and turning heads had sunk somewhere deep into my psyche. During both pregnancies, I dreamed about living the life of a Victoria's Secret model - strutting around my mansion in expensive lingerie and randomly posing with mid-orgasmic expressions on my face. Unfortunately, even postpartum, high heels and teddies are not conducive to changing diapers or running to the grocery store.

After Emerson was born, I was able to at least wear feminine clothes and make-up again after a few weeks. And with the help of lots of walking and Stroller Strides classes twice a week, I was back to my old shape by the end of the year. This time around, however, wearing makeup has become the exception rather than the rule and exercise? Well, let's just say that's not going to happen until I come out of winter hibernation.

Some mommy friends and I were talking the other day about bodies and we agreed that the best way to feel good about your body is to get pregnant. Once you get huge, you realize you never should have complained about how you looked before! Even more than that, though, motherhood is a physical act. It causes sagging, pooching, aching muscles, sore nipples, pinched back nerves and the occasional noise-induced headache.

But it also causes the kind of love that literally makes your heart ache. It's a head full of baby hair nestled into your neck. It's a toddler who wraps his arms and legs tight around your body and won't let go. It's spinning till you're both dizzy, baby drool running down your arm, or hearing a squeaky "ma ma."

So for that I guess I can forget about my illogical desire to please men and instead focus on making good memories for two little boys. And someday - when I catch a rare moment of alone time - I'll strut around in lingerie...just for me.

How my belly spends most of its days - and these are NOT muffin-top restricting pants obviously.

If you're wondering if I've heard of the Winter Brothers....

2009-03-04T15:31:00.005-05:00

So here's a conversation that occurs nearly every time we go out in public as a family:

John Doe: Wow, they've got some really white hair!

Me: Yep. It makes them very easy to spot in a crowd.

PAUSE - they wait for me to explain more, but depending on my mood and energy level, I may or may not give in right away. If I don't,

John Doe: Where did they get that hair from?

At this point I give in and explain.

John Doe: Two brothers, huh? Have you ever heard of the Winter Brothers?

Me: Yep.

PAUSE. If they knew someone once with albinism, they insert that story here. If not, we sit in awkward silence for a few moments.

Me: Yep, we're going to teach our boys how to sing and get their act on the road soon.

I laugh at my own joke and then search for a quick exit.

A few weeks ago this situation played out with a microwave salesman in Sears. He started out saying he recognized us although we had no idea who he was. (Since we spend most of our time walking around our small city with two white-haired boys in tow, this is pretty common. I imagine it must be what celebrities feel like - slightly flattered and violated all at the same time.)

This salesman followed me around the store while talking and finally backed me into a corner so I had little hope of escape. After the Winter Brothers comment, he explained that he knew their music well because he frequently sang their songs as a professional karaoke singer.

Me: Is that like the person who sings a few songs and gets people participating at karaoke bars?

Salesman: No, it's just me singing. People pay me to come to their parties and sing karaoke for a few hours.

Me: So it's just you and a karaoke machine?

Salesman: Yes.

I smile and listen with interest as he recounts his latest gigs, but secretly I wonder how a "professional karaoke singer" is any different than a regular singer who doesn't bother to memorize the words? The whole concept of paying someone to sing karaoke boggles my mind - like eating deep fried Twinkies or buying a Snuggie (seriously, if you turn it around, it's called a robe)

The salesman eventually asked me what I do professionally, so I told him about mothering and ministry. Many a wise minister has told me to make up a fake profession because telling people you are going into/are in the ministry opens up a whole can of worms. Unfortunately, I have yet to come up with a good alias (any suggestions?) and so I told the truth.

Since I am not ordained yet, I'm usually spared from people asking for advice or unburdening their life story on me. But even as a student, people hear ministry and almost always assume you belong to the same religion as them. This man wasn't any different, so I listened to several minutes of his "being saved" story and his journey to finding a Pentecostal church in the area. While I loved hearing his story, I could tell he wanted me to divulge a similar tale - but Pentecostal is about the furthest thing there is from Unitarian Universalism. We have "saved" stories of our own, but not in any form he would recognize.

Instead, I made some general remarks about religion that made him happy, then was relieved when the lights started turning off and a man came over the intercom to say they were closing.

I chose to go into ministry because I want to interact with a wide variety of people and be there to help them during the most vulnerable moments of their lives. I suppose as frustrating and draining as it can be to have the constant attention albinism brings, I've also met some interesting people along the way.

In seminary, we have a habit of labeling even the most mundane things as "our ministry" to make it easier to swallow. Don't like scrubbing the toilet? Think of it as your "cleaning ministry." So I suppose I should work harder at setting aside the internal eye-rolling and make my experiences with albinism part of my daily ministry...an opportunity to gently teach others, set a good example for my sons, and practice patience.

If nothing else, it's a great networking tool to meet people. Need entertainment for your next Bar Mitzvah or birthday party? Have I got a karaoke singer for you....

Curses

2009-03-03T11:54:00.007-05:00

So last night, in a rare fit of motivation and energy, I decided to start painting the dining room while Robbie and the boys went to bed. Since the specialty paint stores were all closed by 5pm, we went to Lowe's and got some Valspar color-changing ceiling paint. I mean, who cares if you put cheap paint on a ceiling, right?

Oh how the gods punished me for that one.

Six back-breaking, neck-wrenching hours later, I "finished." It took that long because I had to constantly move the dining room table and chairs around the room (there's no where else in the house to stash them), I took breaks to nurse the baby several times, and I kept going over the same areas again and again to get good coverage. I feared the worst, but I decided to wait and see what it looked like the next morning. Unfortunately, the light of day only revealed a streaky mess that didn't even conceal the beige paint underneath!

I cheated on my faithful men - Mr. Sherwin Williams and Mr. Benjamin Moore - and now I'm going to beg their forgiveness in the hopes that they can cover this mess. Preferably in one coat.

So here's my question to all you DIY out there: should the ceiling be white, a shade lighter than the trim, or a few shades lighter than the wall?

There seems to be widespread debate about this on the internet and I figured I would revisit the question since I have to revisit the painting anyway.

Don't Drink the Water...

2009-03-03T11:27:00.006-05:00

Our neighborhood is experiencing a population explosion, and this is only a sampling:

Of course as parents we have to torture them with staged photos (we used a ceiling fan as bait to keep them still). I know it's hard to tell which ones are ours, but I'll give you a hint....they're both wearing button down shirts.

I am so hilarious.

Also pictured, clockwise from the top are Jane, Per, and Keagan.

The Big 5

2009-02-28T02:37:00.005-05:00

Ahhhh....my final paper is done, my roof is scheduled to be fixed tomorrow, my church curriculum is written and both boys are alive and - more importantly - sleeping. I can finally focus on the fun things, like celebrating our 5 year anniversary! Actually it is difficult to say we're celebrating because 1) This is our eloping anniversary and technically we agreed to celebrate the "second" wedding 2) Our wedding was on Leap Day (not on purpose) so it doesn't exist this year and 3)We have too much to do to actually celebrate.

Appropriately enough, I'll be spending our sort of anniversary officiating at a wedding - although it's kind of humorous that this couple is getting married after being together for 18 years and I married Robbie after two weeks. But love works in mysterious ways. Some days more mysterious than others....but I digress.

Just for fun, here's our "marriage by the numbers." In the last 5 years we've:

Moved 5 times
Visited 20 different states together
Dated for 2 weeks
Had 2 weddings
2 dogs
2 kids
And purchased 1 house that needs a whole hell of a lot of work

No wonder we're so exhausted!

I'm pretty sure the 5 year anniversary is the electronic slideshow anniversary, so here's a little something for my true love (WARNING, it's pretty long!):

My Montage 2/18/09

The Fionn-ster

2009-02-26T14:51:00.006-05:00

It's finals week and my stupid roof is leaking, so pictures are the most I can muster for a few days. And yes, thanks to his rockin' Aunt Dani, that is Jon Stewart on his onesie...

This Is What a Feminist Looks Like

2009-02-11T18:50:00.002-05:00

Who's the Dummy, Mummy?

Scenes from Daily Life

2009-02-02T22:11:00.009-05:00

Emerson handed me his bottle of water (the child is very well hydrated at all times) and indicated that he wanted more - even though it was half full. I knew he wanted me to add some juice for flavor, so I said, "Emerson, say 'juice.'" He gave out a guttural sound that resembled a German sneezing. I had to at least applaud his effort.

Robbie heard all this and started laughing.

"Emerson, your in-apptitude is so cute."

I burst into uncontrollable fits of laughter.

"Do you mean ineptitude? Gee, I wonder where he gets his difficulty with words from?"

********************************************

Before Fionn was born, I purchased as many new pj's as possible since I knew I'd be spending a lot of time in them after he was born. The other day I was wearing one pair that I scored at the Salvation Army. (They look like this except powder blue)

Robbie had seen them several times before, but with my mom as a captive audience, this time he announced that Blanche Devereux had called - she wanted her pajamas back.

My mom snorted her coffee and told me I should buy some fur-covered heels to complete the ensemble.

I'm not sure what concerns me more - that my husband doesn't appreciate my sense of style, or that he knows so much about the Golden Girls.

********************************************

Every Saturday I've been taking an intensive class at a local seminary entitled "Reformation History and Thought." I'm not a Christian Unitarian Universalist, but since my denomination is historically Christian, we have several history requirements that I need to fulfill. Needless to say, learning about 16th century theologians for 8 hours on a Saturday is enough to make anyone want to stab themselves in the head with a mechanical pencil (I've come close on a few occasions) Luckily my professor is a very enigmatic German woman who knows a lot of odd stories about Martin Luther and who makes humorous analogies every once in a while that help me stay awake.

For example, the other day she announced that "children are the perfect examples of the fact that we are born with original sin." For a split second I was horrified at this comparison...then I thought about my little caveman of a toddler throwing tantrums and I saw her point.

She also made an analogy that compared good people without sin to Jonathan or Granny Smith apples while people with sin are "crap-apples."

Her inapptitude is so cute.

In his own right

2009-01-24T16:57:00.004-05:00

I know this is a cliche, but it's amazing how different two people who come from the same parents can be. Fionn is completely different from Emerson in every way (except of course the albinism). Whereas Emerson took forever to kick in the womb and sometimes went so long without moving that I had to drink a gallon of orange juice to get him going, Fionn kicked non-stop from about 14 weeks gestation until five minutes before being born (he actually kicked me all the way down the birth canal, and yes, it's as painful as it sounds). Whereas Emerson was happy to lay on a blanket and take in the world for the first three months, Fionn wants you to hold him and interact with him CONSTANTLY. The list goes on and on.

One of the biggest differences is in their ability to focus. Like most babies with albinism, Emerson's nystagmus and slower vision development meant he didn't focus on our faces until he was four months old. Those initial months were agonizing to say the least. As my mom reminded me recently, there were several times that I would break down on the phone and sob that he didn't even know I was his mother. But the moment he made eye contact (and I remember that moment vividly), our relationship completely changed.

I was prepared to go through this again with Fionn, but to our surprise, he seems to be able to focus on us already. He wants to make a lot of eye contact and is giving us drooly, muppet smiles. I'm telling you, eye contact and smiling are nature's brilliant way of ensuring a baby's survival!

It will be interesting to see what Fionn's personality develops into - especially considering Emerson is just about the goofiest child I've ever met. For now, we are banking on a bright future in politics based on his uncanny resemblance to Ted Kennedy:

In case you're interested, we will be updating the post about milestones for Fionn as well. Hopefully this will give us some insight on how much of their development is based on personality and how much might be attributed to albinism. Of course, albinism affects each person differently so this is far from scientific, but hopefully it will help other parents in the albinism community.

We're so proud

2009-01-22T23:09:00.002-05:00

Hail to the Chief

2009-01-22T15:53:00.000-05:00

It's even more funny now that it's over!

Suburban Invasion

2009-01-21T16:07:00.003-05:00

I am afraid I am turning into a typical suburban housewife - the other day I watched Oprah AND cried, let my children run around pantless all day, and cooked dinner in a crockpot. Heaven help me.

Incidentally, if anyone has good vegetarian crockpot recipes, let me know.

Damn it, there I go again!

A rose by any other name....

2009-01-21T15:10:00.005-05:00

This is an interesting article about the use of the word Albino. Andrew hopes to put the full quotes in another article for his blog, so I'll post a link to that as soon as it comes out. Thanks Andrew!

http://activism.suite101.com/article.cfm/is_the_word_albino_derogatory

Here is an earlier post about the word albino that he posted on his blog:

The Original Off-Color Insult

In case you're interested, here's the full quote I gave Andrew:

I believe that the term albino can be offensive and that it's important for us to educate people about person-first language. I don't get upset when people call our children albinos because they usually know nothing about the condition, but as often as possible I use the opportunity to gently say to them, "They are people with albinism."

However, within our own home, we try to be more playful about the term and hope to teach our children that they can reject the term if they want, or make it their own. I think no matter what stance you take on it, people who are labeled will often use the label for themselves and amongst friends and family, but don't appreciate the casual stranger using it. At least that has been my experience.

If my sons want to use the term in such a way that they can reclaim it and feel empowered, I will support them in that. If they are sensitive about it and don't like using it, I will do everything in my power to educate and correct people. Either way, I hope they feel proud of who they are and the amazing albinism community we get to be a part of.