We're Embracing

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.”

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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.

"That" Kid

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

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.

Step One: Admit You Have a Problem

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

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 Two - Manic Monday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

He heaved a sigh. "Definitely."

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

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

Travel Log Part One

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

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

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

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

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

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

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

I couldn't agree more.

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

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

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



Priceless.

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

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

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

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

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

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

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

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

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

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

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

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

Now I just need to inform Robbie that he is going to bake his famous chocolate chip cookies...

Our Month in Pictures

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

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


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


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


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


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


She had it backwards.


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


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



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



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

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



Emerson 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.

Deep Breaths

Emerson at Rosh Hashanah

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

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

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

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

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

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

Poop Happens

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....

See You in September

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: