Tuesday, December 21, 2010

True Life | I'm An Albino

True Life | I'm An Albino: "Zane, Jennie, and Zack are three young people who suffer from Albinism, a genetic condition where they have no pigment in their skin, hair or eyes."

Sunday, December 19, 2010

Happy Happy Birthday Baby

This morning Emerson climbed into bed with me and I whispered, "Happy Birthday - today you are four!" He looked suspicious. "It's not birthday time, it's Christmas time." I tried to explain that it was both his birthday AND Christmas time, but I think he was concerned about missing out on the whole Santa bringing presents thing.

Eventually we got him his favorite breakfast - pancakes at a local Coney - then he got to open a few presents and hear several sweet renditions of the Birthday Song on the phone from relatives and friends. By the end of the day, the reality of his birthday had fully sunk in and the conversation turned to cake. Since we already did a half birthday party complete with cake and candles this past summer, we kept it simple and stuck a single candle in a chocolate cupcake. He helped us sing the song while Fionn watched with a huge grin plastered on his face. (I can't tell if he was just so happy for his big brother, or if he has learned that singing Happy Birthday to anyone is always followed by eating cake.) Emerson announced "I LOVE this cake," ate off all the frosting, and then decided that he was ready for bed.

If you ask him how old he is, he laughs hysterically and says "2." I insist that he's four in public because hauling around two little kids with a giant pregnant belly leads to a lot of raised eyebrows and thinly-veiled disgust as complete strangers constantly ask me, "How far apart are they all?" I've been telling people I have a four and two year old for the past 6 months, so the actual transition to four years old hasn't been a huge leap. But on some level I just can't comprehend that I actually have a four-year-old, so maybe it just hasn't hit me yet.

In any case, his birth seems like a lifetime ago. Here is a gratuitous repost of his birth story, and a few pictures.

It's hard to believe I'm willingly doing it all over again in another month!

40 weeks pregnant. This seemed so big and painful at the time. I look exactly the same at 34 weeks pregnant now.

One of two birthday cakes that the hospital staff gave me while I was in labor on my birthday. It was so sweet - but it's true that hospital food is horrible.

Robbie helping me through a back contraction. I know it looks kinky. Trust me, it wasn't.

His big debut

Friday, December 17, 2010

Happy Lusse Natt

I'm all about traditions and family heritage and other such sappiness - especially this time of year. Now that the boys are getting old enough to begin to understand traditions, I decided it was time to celebrate the Scandinavian holiday Lusse Natt (Lussinatta, St. Lucia Day, St. Lucy Night - the names are numerous.)

The holiday began as an early Pagan celebration of a witch figure named Lussi who came out at night on December 13 (Winter Solstice according to the Julian calendar at the time). It was thought to be dangerous to be out in the dark between Lussi night and Yule (later called Christmas) because evil spirits like Lussi and her companions were active at this time. Households kept the spirits away by feasting and drinking at night, lighting candles, and finishing holiday preparations early. Children were warned not to be naughty or Lussi would come down the chimney and take them away. (She pre-dates the legend of St. Nicholas in case you're wondering.)

Later on, the Christians adapted the Pagan story of Lussi into the story of the martyr St. Lucia. According to one popular version of her story, she brought food to the persecuted Christians hiding out in the catacombs in Rome. To keep her hands free for carrying food, she wore a crown of candles in her hair.

Traditional St. Lucia Day celebration

No matter which version of the story you focus on, her name means "light" and the celebration represents the eternal struggle between darkness and light. This was a major theme in the brutal northern countries, so I suppose it was fitting that we spent our Lusse Natt trapped inside the house due to snow and below zero temperatures.

Normally the focus of the day is a morning procession led by the eldest daughter, who dresses up as St. Lucia and brings the parents a breakfast of coffee and Lussekater buns. But since we don't have a daughter to dress up yet, and since we are not exactly morning people, we put the focus on dinner. The day is often used to perform good deeds and/or deliver presents, but my plans for that also dissolved when the temperatures plummeted.

Instead, we spent the day baking cookies for Emerson's teachers and bus drivers (he loves to bake cookies almost as much as he loves to eat cookies). I was too lazy to get some saffron for the Lussekater, so instead I tried my hand at making a traditional Swedish cardamom bread. Despite a momentary panic attack when I couldn't remember how to do a simple braid, at least one out of the two loaves turned out looking the way it was supposed to. We gave that one as a gift to neighbors who lived in Sweden for many years and ate the ugly one ourselves.

In the traditional procession, boys dress up as Stjärngossar (Star Boys), so the boys used their creativity to color stars and I relied on Robbie's superior geometry skills to fashion rudimentary cone hats.

Before dinner we had a minor "procession" that mainly consisted of me throwing on their costumes and snapping pictures as quickly as possible before they were destroyed.

Emerson was convinced his hat was a birthday hat and kept singing the birthday song. Fionn ripped his hat and we broke two electric candles in less than 5 minutes, but all I cared about was documenting the moment. I figure at this age they don't remember much, but if I can show them pictures of it in years to come, they will form memories around the images instead. I mean think about it - whenever you look at pictures of vacations and events later on, you have much more positive feelings about it than you did when it was actually happening. At least I hope that's true for other people because I'm going to rely on it heavily during their childhood...

We ate a simple Scandinavian dinner of salmon with dill, cardamon bread, warmed glogg, and Pepparkakor (gingerbread biscuits). I cheated and bought the cookies instead of making them, but the various shapes they come in were a huge hit with the boys. It was a good thing they played with their polar bears and snowmen so much since it prevented them from downing a hundred cookies in one sitting.

I can't wait to make up a tiny candle crown for our daughter next year, and hopefully bring more meaning to the celebration for the boys. In the meantime, my hard work explaining Christmas this year has finally paid off. The boys have showed almost no interest, but then yesterday Emerson announced that "It's Christmas time and Santa brings us presents." When he started throwing balls down the stairs later on, I asked him to please stop. His temper has been atrocious the past couple weeks, so I was bracing for battle. Instead he considered the situation for a moment and then said, "Ok, I can't throw balls down the stairs. Santa brings us presents."

As much as I hate the fact that women do 90% of the work for the holidays and then give all the credit to some fat old white guy, there are times when I appreciate Santa Claus. A lot.

Speaking of holiday preparations, while I have been busy handling cards and shopping and wrapping, Robbie was busy doing this:

Ok, to be fair, he did (begrudgingly) help me put up the tree and decorate it. And he nodded when I would ask his opinion on gifts, but most of his festive energy went into this. His work had an "Ugly Christmas Sweater" contest, so not only did he buy an ugly sweater, he also hot glued ornaments and presents on it to make it 3D. Then he fashioned a portable light system to make the lights he glued on the collar actually glow.

Incidentally, while he was shopping for the sweater in Value World, he saw a woman standing in the aisle without any pants. Then he brought home his goods and made the final product without even washing the sweater first. Pray our family doesn't spend Christmas infested with...something.

Thursday, December 9, 2010

Nothing Says "Happy Holidays" Like Sunscreen!


We are collecting sunscreen to donate to people with albinism in Tanzania, so if you were thinking of buying our family a gift, please consider a donation of sunscreen instead. We will collect local donations and send in one shipment, or if you aren't local, the direct shipping instructions are below.


Skin cancer is the # 1 killer of persons with albinism (PWA) in Tanzania, most dying between the ages of 30 - 40. There are tens of thousands of PWA in Tanzania alone, and yet it is almost impossible to purchase a bottle of sunscreen there. Even if it could be found, the SPF is inadequate and the cost prohibitive for the average Tanzanian. UTSS is having difficulty keeping up with the need of our 300 plus ESF students, let alone the numerous PWA that regularly visit our office in Dar es Salaam.

- No aerosol containers can be shipped.
- A minimum SPF (sun protection factor) of 35 - higher is better
- All bottles must be new and unopened
- Please seal each bottle in a Ziploc bag before shipping

US mailing address:
Under The Same Sun
c/o Mike's Parcel Pickup
183 W. Stutsman Street
Pembina, ND 58271-4100

NOTE: Once goods arrive at either of the above addresses, they will be shipped via secure transport to the UTSS office in Dar es Salaam, Tanzania, for distribution to people with albinism.


Monday, December 6, 2010

At Least I'm Not Alone

The great name debate has me totally exhausted, but according to this article my mom sent me, apparently I'm not the only neurotic one.

Baby names reveal more about parents than ever before
Did you spend hours obsessing over what to name your child? Time well spent, experts say -- names communicate a wealth of social information, now more than ever


Friday, November 12, 2010

What's In a Name? Way too Much

When you are expecting a child, there are two things people immediately want to know: "Boy or girl?" and "Do you have any names picked out yet?" I generally don't mind this line of questioning, although I admit it seems a little creepy when complete strangers want to know your name list (not that that's kept me from being said creepy stranger).

Some people want to keep it a secret until the baby is born and I completely agree with their reasoning. But I also put so much weight on names that I like to test them out on the general public beforehand - hear how they sound in conversation, watch people's reactions, hear the stories and associations ("oh my god, I went to school with someone named that and they were awful!"), etc.

This is why - the day we found out it's a girl - I forced Robbie to spend hours talking about names. And the discussion has never really stopped since then. I loved thinking about girl names at the beginning of both previous pregnancies (aka before we knew they weren't applicable), and we had compiled a pretty long list of possibilities.

I thought this would make our decision easy for this baby, but when we reviewed our previous list, 99% of them got the chopping block right away. In the past four years they had either become too popular, been used by someone else we know for their children (or in one case a pet chicken), became associated with someone famous/infamous, or we just plain fell out of love.

We (mostly me) have pored over websites and books, considered character names in novels and movies, learned about famous suffragists and ancient goddesses, and even researched our genealogy for family names (Rasmina was rejected out of hand, Georgia was a contender but couldn't make the final cut, and I'm still trying to figure out a way to make the Swedish name Kjerstina a good middle name).

At one point, Robbie's mom came to visit and we went to see a rare (and much appreciated) late night movie while she held down the fort. At the end, we sat in silence and watched the names in the credits go by. At the same time we saw a name that peaked our interest:

"What do you think about the name Novella?"

"I was just about to ask you the same thing!"

"Then that's settled - we'll name her Novella."

It's not so much that we even loved the name, it was just the rare fact that we both agreed on it. Unfortunately, the novelty of Novella quickly wore off. That and the fact that we can't bring ourselves to name our daughter after the key grip in some independent film.

All this is to say our current list is short, often changing, and there aren't any that we are particularly emotionally attached to. As of this writing, it includes:

Estella (this is a compromise between my request for Stella - at which point Robbie does his best Marlon Brandon impression - and Robbie's request to name her after Estelle Getty. Yes, the actress on Golden Girls.)

As you can see by now, we need some help. We've set up impossible expectations: We want it to be feminine and meaningful, but not common or trendy. We are not huge fans of nicknames and try to avoid names that lend themselves to that, but we could be swayed by the right nickname. And most difficult of all...it has to sound good with the last name Hartley-Beane. (Yes, I fully expect that our children will need therapy as a result of my compulsive feminist need to hyphenate last names. And yes, I know that it's going to complicate things when they get married, so spare me the lecture.)

If you're a person who likes a challenge and wants to help us in our quest, we will happily take suggestions at this point. Don't take it personally if your names don't survive our gauntlet - very few do - just know that we appreciate the offering.

And with that, the polls are officially open....

Friday, November 5, 2010

Your Parenting List

There are so, so many things I've been dying to write about the past month, but the crushing weight of homework pulls me back. While I slog through my final two weeks of the quarter, I thought I would at least make a small attempt to reconnect with the blogosphere.

As I've mentioned before, ever since I thought about having kids, I've been slowly compiling my Parenting List - things I want to teach my children before they move out of the house. Some of the things on the list are practical. For example:

1. Teach them how to cook
2. Teach them how to clean well (the boys are at distinct disadvantage since the Y chromosome seems to render men incapable of seeing dirt, and their low vision literally makes it hard for them to see dirt. However, I am determined to make this one happen one way or another!)
3. Teach them how to keep on a budget (as soon as I figure it out)
4. Teach them how to write gracious thank you notes.

Some things on the list are more complex and abstract:

1. Instill a strong sense of empathy
2. Help them develop a safe and just sexual ethic
3. Teach them media literacy

Some things are based on my bitchy pet peeves, hence my latest additions:

1. Never, ever visit someone with a newborn baby unless you plan on either a) bringing them food or b) performing chores/errands, etc.
2. Digital cameras have delete buttons and they are wonderful things. You don't have to upload your entire camera, including bad/blurry/repetitive pictures, onto your Facebook, blog, flickr (whatever media exists by the time my kids are old enough to upload pictures).
3. For my future daughter - Nobody looks good in Uggs and sweatpants. Nobody.

So if you have kids or plan on having kids, what kinds of things are on your list? I need an excuse to take five million breaks from my textbooks - so please share!

Saturday, October 9, 2010

I am still alive!

I know I joked about monthly postings, but I swear this long hiatus is due to a string of technical issues that left me with no computer and no internet access for two weeks. While taking two online courses. Yeah, it's been fun.

I'm stealing a moment in a coffee shop on Robbie's loaned laptop, but I promise next week I'll be up and running. More insanely long posts, gratuitous pictures of my kids, and pregnancy complaints are on the way, so never fear!

Wednesday, September 8, 2010

So we totally caved.....

Profile shot, a little hand waving "hi," and on the bottom, some perfect feet.

A couple of weeks ago, I was laying in bed thinking about the baby's upcoming (although hardly impending) birth. I've been thinking about this a lot lately and I'm usually overwhelmed with excitement and joy. Both my previous births were wonderful and on different ends of the spectrum - one induced with Cervadil and days spent in the hospital surrounded by a huge staff and constant machines. The other a quiet homebirth where Robbie and I were completely alone until the last half an hour. Both ended with the natural birth I wanted and a healthy baby, but I feel like this birth is my chance to hit the perfect middle ground. We will still do homebirth, but with a few more women around to help and offer emotional support early on so that Robbie and I can be completely present. Thinking and preparing for this is one of my favorite pastimes, but this particular night was different.

I started thinking about the moment when he/she came out and Robbie called out the gender. I thought about the midwife placing a wet, squirmy bundle in my arms and allowing my eyes to focus on hair that may or may not have pigment. I thought about the boys padding into the room to meet their new sibling and the sudden realization that I'm the mother of three. The more I thought, the faster my heart raced. Suddenly I couldn't breathe. If this was how I felt coping with all these realizations, all these "surprises," four months before the birth, how was I going to handle it when it actually happened under the influence of postpartum hormones?

I rolled over and whispered to Robbie, "What if I just found out the gender and kept it a secret from you and everyone else?"

He laughed and made a joke about how quickly I was caving on our "keep the gender a secret" pact. Then he pointed out that I have the worst poker face on earth. I couldn't argue with the that.

But the next morning, he brought it up again, and assured me that if I wanted to know, he would fully support me. I didn't want to know, frankly, I wanted to just enjoy this pregnancy without knowing. It's like the moment you get a letter with a job decision or college entrance decision. The outcome is so important that the idea of opening it leaves you, at least momentarily, paralyzed and terrified.

I wished gender wasn't so important to me, because keeping it a surprise for everyone would be a lot more fun. In the end, though, I did care a lot. And I needed to know.

Our discussions quickly dissolved from only me finding out, to both of us finding out. When the ultrasound came on Friday, we had resolved to make the tech write it down and then open the result whenever we felt ready.

The scan itself went really well. Even though this is our third baby and our tenth ultrasound over the course of four pregnancies, it was still just as exhilarating and baffling to see the tiny body wiggling on the screen. I had been a little panicked about the baby's health because I haven't felt much kicking or movement, and I've heard a lot of horror stories about birth defects lately. To my enormous relief, however, everything was fine. The boys were surprisingly quiet and calm up until the last five minutes, when Emerson regaled us with some elegant fake burbs and announced to the tech several times that he was "going to fart on daddy." I noticed she was the only tech I've had who didn't ask what gender we were hoping for. I think she knew.

After Robbie escorted the boys outside, she told me that I was a "beautiful scan" and asked if her first-year resident could come do another scan while she went over my results with the head doctor. I blushed and fluttered my eyelashes, "Anything for science." When you grow out of another pair of maternity pants every week, you take any strange compliment you can get.

When we got home, I called my mom to tell her the results while I still technically didn't know the gender. I'm fine with lying to everyone else, but I draw the line at my mother. I once snuck out of the house at 3am without making a single sound and two minutes later she woke up and walked outside to scream my name. You don't mess with that kind of maternal intuition.

After I hung up the phone, Robbie and I sat on the porch and stared at our white envelope. "You look first," I told him. "I can't do it."

I closed my eyes while he looked. "Ok," he said, his voice not betraying any emotion. "Now look." And so I did.







Ok, the booties weren't actually there, that was my first celebration present to myself. I mean, the kid.

There aren't words to describe that kind of surprise and excitement. We screamed, we jumped up and down, we hugged, we repeatedly looked at the paper to make sure it still said "girl." Since we were on the porch I couldn't make too big of a scene, but when I went inside to grab something, I did a jumping dance of joy around the house that was impressive considering my size. It was real (assuming the tech hasn't made a big mistake). We were getting our girl - a daughter - and our family would be complete.

I always imagined I would have a daughter - there wasn't any other possibility. As a little girl, princesses and ballet tutus and frills defined me. My relationship with my mother was and has always been my closest relationship. I was close to my sister, my only sibling, and learned a more tomboyish sense of femininity from her.

As a teenager, I discovered women's history and the fight for equal rights. In college, I delved into gender studies and modern feminism. Long before I had children, I thought about what I would tell my daughter as she struggled through puberty. I vowed to teach her about the generations of women in our family and in history who had paved the way for her. I thought about her father walking her down the aisle and being there when she had her own children (assuming she hadn't grown to hate my guts by then).

Ok, I admit, I also dreamed about braiding her hair and taking her to dance classes and buying excessively cute dresses. At least for the first couple of years, at which point she would rebel against me by wearing nothing but pants and the color blue. Later, she would rebel by screaming and slamming doors, but I was prepared for that. If anyone knows drama, it's me.

What I wasn't prepared for was a boy. When I heard the news with Emerson, it didn't seem possible. When I heard the news with Fionn, I was devastated. I never doubted for a single moment that I would love them as much as I would love a daughter. I didn't regret their existence or fail to bond with them - I just mourned the loss of my expectations. In exchange, though, I got a world of wonderful experiences and insights that I couldn't have imagined.

Since both boys are polar opposites, I'm constantly learning about the nuances of masculinity from them and from their father. I never thought I would be excited to go to an event called "Touch a Truck" or that I would tear up at the sight of my boys' first ride on Thomas the Train. I never thought I would giggle when someone farted or that I would melt so completely watching my boys take care of their baby doll.

Now I feel like the luckiest person on earth because I get to experience another world through another baby's eyes. It probably won't match the expectations I've built up over the years, but I know it will be more amazing than I can possibly imagine.

I'm finding myself using a lot of sappy synonyms for "great," so I'll cut this short. But as a final act of celebration, I have to share these pictures. Among the massive dress collection that this little girl will inevitably amass, I'm most excited about these:

This is a dress my mother wore as a baby that I can now give my daughter.

This is one of three dresses that my mother saved from my childhood. I'm not usually a fan of crocheted clothes, but this one is so sweet. It's full of pink ribbons and comes with matching bloomers. FREAKIN BLOOMERS!

Ok, now I'll stop.

p.s. those old wives-tales about pregnancies with girls being harder, that daughters "steal their mother's beauty," or that girl pregnancies give you an ass the size of the Grand Canyon. So far in my case, all true.

Thursday, August 26, 2010

A Pilfered Post

So my husband is fast asleep next to me, which is understandable given that it's midnight. If I don't initiate getting ready and going to bed, he will always fall asleep on the couch next to me, or even occasionally sprawled out on the floor. I think it's because he just wants an excuse to sleep on the couch and avoid getting ready for bed. He claims it's because he just wants to be near me until I'm ready to go upstairs with him. "But," he adds, "I do love to sleep on the couch."

Since this exchange is about the closest thing to romance in our relationship, I will try to stick with his explanation.

ANYWHO...I'm going to use his current state of unconsciousness to violate his privacy. (Get your mind out of the gutter!) I was cleaning out old blog drafts tonight when I came upon a partial post he wrote when Emerson was about three months old. It's so endearing that I'm going to share it without asking. You may think that's a horrible thing to do, but I'd like to draw your attention to the joke he makes about me in the end. Enough said.

"Every so often while carrying Emerson in my arms, I'll look over to find him already staring at me with this intrigued expression on his face. More than his hardy little laugh or his high-pitched songs - and even more than his face-eating attacks, those split seconds of catching him staring at me are my favorite times with him.

Suddenly I'm reminded that, oh crap, this is what it's all about. I suppose I sometimes lose sight of the fact that he's not just this little mini-me that's going to one day be an adult. Every little thing I do with him, around him, shoot even not around him... from the day he was born, nearly every action of mine is going to influence him in some way. Is this what I signed up for???

I don't know how I managed to float past this concept so easily. On a nearly daily basis I find something about myself that reminds me of one of my parents. A mannerism of my dad, an opinion of my mom's, a silly phrase of my step-dad's. I constantly wonder out of both fear and excitement what traits the Kid will have due to having me as a father.

When friends and family first learned of me becoming a father, the general reply was, "Poor kid." I knew it was all fun, and I joked along with them. But seriously... when conversations with old friends turn to stupid/crazy things we've done, my list is pretty much always the longest. And now I'm being charged to raise another one of me?

On a side note, here's a quick list of things I'll be sure to teach him NOT to do:

- Play leap-frog with a unicorn (ouch!)
- Listen to Kenny-G, John Tesh, or Yanni
- Be sure that if he marries an Ex-Mormon, she was at least properly trained to be a good Mormon wife (cook, sew, obey)
- Make jokes on the internet about his wife and the fastest growing religion in the world."

When Robbie talks about "face-eating," this is what he meant:

Saturday, August 21, 2010

Where Was I...?

Fionn tries on a new visor courtesy of the sun gear exchange. This will be perfect for his next water aerobics class. If only they had fanny packs...

Oh yeah, so about that conference post I promised a month ago. I guess I should just accept that I won't be doing weekly posts for a while. Ever since we found out about the baby, a giant countdown clock in my head constantly reminds me of how little time we have left to finish the house renovations before the big B-Day.

When we had Emerson, we dealt with the holidays six days later and then traveled to Chicago for my first intensive school session two weeks after that. When we had Fionn, we purchased our first house five days later, began renovations, and then packed and moved from our rental - all in the dead of winter. This time, we have finally learned our lesson. The moment this baby arrives, nothing will get accomplished for at least six months. At least.

When I get weekly pregnancy calendar updates in my email, I'm interested in whether my baby is the size of a turnip or a bell pepper. I'm interested in whether he developed fingerprints or if his bones are hardening. But mainly I stare at the number of weeks left to go and feel a mixture of excitement and sheer panic.

That said, things are just going to be chaos for a while. Before I get lost in it all again, I'll do my best to recollect our first NOAH conference:

So our first major roadtrip with both boys was about as hellish as we expected - although the boys were actually the easy part. Everything that could go wrong did, making it a typical family trip full of stories that become funny later on. Much later on.

We arrived at our friend's house in Virginia exhausted and grateful for a comfortable bed to collapse into. Emerson surveyed the situation and quickly assessed that our friend (his Guide Father Steve) had a "cool house," a "cool bed" and a very "cool pool." Four-star digs by all accounts.

The next morning, I took off for the Mom's Mini Conference while the men vegged out on the couch. The moment I walked into the hotel where the conference was held, I found myself in a sea of white hair and familiar faces. I must have looked like an idiot, going around with a permanent grin plastered on my face. It was amazing to think that here we could walk around without being stopped a million times to answer a million stupid questions.

Of course, I forgot that Fionn's mop of curly hair and bubbly personality meant we would get stopped several times no matter what. At one point, four or five people at the conference were trying to get Fionn's attention so that they could take his picture. Robbie suddenly became a Hollywood baby wrangler, attempting to point Fionn in the right direction and encouraging him to smile politely. When it was over, I whispered to Robbie, "We need to figure out how to make money off all this attention - at least build the boys a nice college fund."

By the end of the conference, the boys were so tired of having their picture taken, they went on photo strike. Fionn wouldn't go near a camera and Emerson took shots like this:

But I digress. The mom's conference was about what I expected...a lot of tears, a lot of talking, and some good tips to take home. The next day the full conference began, so the boys reluctantly headed off to daycare and Robbie and I split into different sessions. Most were informational, including a session on sports for the visually impaired, dealing with school districts and the IEP, and a session that gave demonstrations on what people with visual impairments actually see. Others were more emotional, including a session on dealing with taunts and staring, a dad's discussion (not really emotional, but they tried), and a session on school bullying.

Perhaps my favorite session was one given by photographer Rick Guidotti. Rick is a professional photographer who was working for major fashion magazines when he spotted a woman with albinism walking down the street. He thought she was so amazing, he went home and learned everything he could about the condition. He ended up doing a photo shoot for a different woman with albinism - a woman who started out shy and self-conscious. Through his enthusiasm and his photography, she left the session feeling beautiful and confident. Rick decided to leave the fashion world and now runs a non-profit called Positive Exposure devoted to celebrating differences through photography.

Positive Exposure

He travels the world photographing people with albinism and other genetic conditions, fighting violence against people with albinism in Africa, educating government agencies and health professionals about genetic conditions, and running self-esteem workshops.

He gave a slide show of the many people he's met in his travels and talked about the challenges people in Africa face. Needless to say, pregnancy hormones mixed with heart-wrenching stories meant I spent the entire session sniffling and wiping my eyes like a boob.

The best part of the conference was the chance to socialize with other NOAH families - some new friends and others we have known for years through the magic of the internet. We even got a chance to eat dinner with our friends who came all the way from the Philippines. Fionn and their son Vivaan hit it off pretty quickly:

The last night of the conference was a fundraising auction and dance party. Despite a long trip and not much sleep, the boys took to the dance floor with gusto:

The guide dogs take a break at the end of a long day, so the kids move in for snuggles.

In the end, we left the conference grateful for the experience and excited to get to the next one in St. Louis two years from now. But I do have to say that in many ways the whole thing was overwhelming. I think we forgot that despite all we've been through emotionally, there are so many emotional and logistical issues still to come. The boys are relatively dependent on us at this young age, so it wasn't until we were around adults with albinism that we realized how much they still need to learn in order to live independently.

For instance, during the session on sports, the issue of P.E. in school came up. I heard stories of people struggling to get P.E. teachers to find group activities that would work for visual impairments instead of just forcing kids to sit on the sidelines because they can't see the calisthenics teacher from the back row or don't have the depth perception to do a fast-paced ball activity. Sports never concerned me - partly because there are plenty of individual sports that can be adapted, and partly because we are not big sports people. But P.E.? Holy crap, I hadn't even thought of that!

During a trip to the bathroom, I heard a woman with albinism ask another woman for help because she wasn't able to see which stall doors were open a little and therefore vacant, and which were closed. I thought about how hard it will be for my shy Emerson (for men with albinism in general really) to ask for help from strangers in situations like these.

We met adults with albinism who didn't have any apparent visual impairment, and we met adults with albinism who relied on guide dogs. I wondered where in the range the boys would fall and the "what-if"s threatened to overwhelm me.

On the other hand, every person we met was gorgeous and kind and successful - a reminder that our boys will overcome whatever is to come. One story that I heard second-hand summed up all my feelings about their future:

A bunch of the teenagers with albinism at the conference went out to dinner together. The adult chaperons, including many of their parents, sat at a separate table. During the course of the meal, a group of pigmento teenagers sat near them and started staring. After a while, they pulled out their camera phones to take pictures of the teens with albinism like they were some sort of freak show. The chaperons, to their credit, held back and watched what unfolded. (I would have thrown myself across the room and caused a scene so big that my children would've never forgiven me. Note to self: don't be a chaperon.)

The teenagers reacted coolly by taking out their own camera phones and taking invasive pictures of the pigmentos. A dose of their own medicine.

When I heard this story, it made me cry and filled me with pride at the same time, which pretty much sums it up. The future is going to be really freaking hard. And really freaking good. And I'll do my best not to be a sniffling boob.

Wednesday, July 21, 2010

And SO....

Fionn tries some break dancing at the NOAH party

We're back, and even three days later I'm not sure if we have recovered from the exhaustion of traveling. I have a head swimming with a 100 different posts on all that we saw and experienced, but before I get to that, I'll talk about the ominous thing that I didn't want to talk about in the last post. I apologize to those that I inadvertently alarmed, but I applaud your prolific imaginations!

Anyway, here it is:

I know I've posted this before, but look again closely. Here's a clue, that's not the wind lifting my shirt. It's not a beer belly. (If only I could drink beer - after 24 hours driving cross-country in a car, I've never needed a drink more in my life.)

It is a baby bump - an inordinately large baby bump at that.

We haven't mentioned our news sooner because 1) we wanted to wait until I hit the second trimester to be sure everything was at least mostly in the clear (that milestone came last weekend) and 2) we didn't want to make a big fuss. Not that we aren't excited, but let's face it, the first one is met with overwhelming joy, the second one is just expected, but by the time you hit the third, people start looking at you like you're the Duggars.

The people who see us on a regular basis learned about our secret several weeks ago since I was in maternity pants by six weeks along. Some people spent a lot of time glancing at my swelling belly until I finally cracked, the bolder people took one look at me and said, "Are you pregnant?!!"

Needless to say, with my speedy growth, I spent several weeks sweating about the possibility of twins (they run on both the maternal and paternal sides of my family). But a nine-week ultrasound revealed one, and only one, healthy heartbeat.

By now you may have some questions for us. Everyone does. So here's my fancy FAQs section:

Three kids? Are you insane?


When is the due date?

January 30, 2011

Are you finding out the gender? Are you finding out if it has albinism?

No and no. The first pregnancy I wanted to find out, so I promised Robbie we would keep the second pregnancy a secret. The second pregnancy I NEEDED to find out, so I REALLY promised Robbie we would keep the third pregnancy a secret. I honestly never thought we would have a third one. But here we are.

Seriously, though, I don't need to find out. I am 99.99% sure it's a boy and I've mentally prepared myself for that.

As for albinism, we're also expecting that this one will have albinism even though there is a 75% chance it won't. We know of families that have three in a row, so it is very possible. We could do genetic testing ahead of time, but it wouldn't change anything and I'd rather avoid being stuck with a giant needle.

Is it true that subsequent pregnancies are easier?

No, and if anyone tries to preach that as gospel, slap them - open-handed - across the face. This has been by far the hardest pregnancy.

If it's a boy, are you going to keep trying until you get a girl?

No, see answer above. Also, I won't have the energy for three boys much less four, five, six, etc.

Perhaps most importantly, we can barely squeeze a third into our lives as it is. A fourth or more would require a new car, a new house, and a new stroller configuration that I shudder to even imagine.

Did you give up on adoption?

As I said in that post, we had to give up on it considering the high costs. If we win the lottery or if a perfect situation were to present itself, we would still be ready and willing. In the meantime, we need to have our kids close together because I only have three years of school left and I'd rather stay home with them while I'm studying instead of getting my first career job and then pausing for maternity leave.

I still stand by the advice I blurt out, bleary-eyed and ragged, to any parent who's planning on future children: three or four years apart is good. Two years apart is bad. Real bad.

When it became clear that adoption wasn't going to work, it occurred to us that we still had the old-fashioned option. We both knew that we were guaranteed to get another boy, so our decision had to be based on that assumption. We thought...we debated...we changed our minds about a million times...and eventually it came down to one cliche fact: our family did not feel complete.

We decided to give it a go, thinking foolishly that perhaps it would take a few months and we'd have more time to REALLY think this over.

We got two lines the first month.

I know many people face loss and infertility, so I want to emphasize that we are completely, eternally grateful. When I think about our future life I finally feel that sense of wholeness. When the boys press their sticky mouths to my stomach and yell "Hello baby!!" - my heart fills to capacity.

And yet, I admit, there are times when Robbie and I lay in bed at night and one of us will whisper to the other:

"Do you realize we're going to have three children under the age of five? THREE We're not even 30 years old yet!"

"I know, what were we thinking?!"

There is a pause as we are simultaneously gripped by panic at the thought of going through the newborn phase, again, with two toddlers. Since we have stopped breathing, the only sounds are the cicadas chirping in the damp grass and Fionn softly snoring in the crib next to our bed.

"That reminds me, we gotta get this kid out of our bedroom in time for the next one."

"I know."

We eventually start breathing again.

"It's going to be OK. It's going to be good."

"I know."

Monday, July 12, 2010

Bad Blogger

OK, I've been called out on my absence by my three readers, so I will break all the blogging rules and create a post about why I'm not posting. Part of the problem is that the biggest issue in our lives right now - the thing jockeying for the most mental and physical space - is something I can't talk about. At least not for a little while.

The other part of the problem is that I had a personal epiphany in which I realized an important piece of my personality has gone missing. I'd like to blame it on my selfless devotion to motherhood and becoming consumed by my children, but I think you all know me well enough not to buy that. No, it's just one of those things I sort of lost along the path through adulthood. It's like that moment when you've been running errands for hours and you reach into your pocket or purse for your keys. Even before you've explored every crevice, you already know in your gut that they're gone - carelessly dropped somewhere or left behind on a counter. And now you've got to retrace your steps.

The reality of this scenario plays out in my life every other day, but metaphorically I'm still in the process of retracing my steps. I don't wish to inflict my navel-gazing on anyone else (more than I already do), so hence the silence.

The good news is that in just two days, we leave for our first-ever national albinism conference in Washington, D.C. Between our first major road trip with two kids and our first chance to see over 800 people affected by albinism in one place, I should have lots to write about soon.

In the meantime, here are a few pictures of our adventures so far. The summer has been streaking by, but it has been punctuated by some beautiful moments.

Bubble Hair:

Michigan Albinism Picnic at the Beach:

Love Blooms in the Garden:

My parents come to Michigan every year in the winter to babysit while I go to school, so for the first time they got a chance to come and just have fun in the good weather. We packed our schedule with all the best tourist destinations within a 4 hour drive.

Visiting Sleeping Bear Sand Dunes:

Historic Fishing Village in Leeland:

The beaches of Traverse City:

A former insane asylum turned into a shopping and restaurant mecca:

Friday, June 4, 2010


For some reason, my children have conspired to drive me over the brink of insanity the first night of Robbie's business trips. They are already bad sleepers, most especially Fionn, but they really pull out all the stops on my solo nights. This has the effect of making the rest of the week, or weeks, that he's gone nearly unbearable since I've started out with zero sleep.

Last night was no exception - after going to bed at 1am since I was trying to catch up on a million things, Fionn decided to wake up 4 or 5 times (it's all a blur now). Then, at 5am, he decided that the pewter light edging in around the drapes was as good as daylight, so he demanded to go downstairs for breakfast. What followed was a nightmarish sequence in which I tried to sleep on the couch in between entertaining him, knowing full well that the sleep I was getting wouldn't help at all and not giving a damn anyway.

Finally, I noticed that my dreams were getting longer than one minute, so I cautiously opened an eye and found him splayed out on the rug, fast asleep. Ahhh. I snuggled in and got a blissful half an hour of sleep. At which point a splatter of little footsteps upstairs told me that I was in for round two.

I share all these details not for sympathy (sniff sniff), but just to explain why the post that follows is less of a post and more of me just vomiting random words and pictures onto the screen.

On the good news front, Fionn had his yearly evaluation with the Early Intervention team and they determined that he is right on target for all his milestones. I've been assuming that Fionn would have at least a few delays and need to go through the toddler group and then preschool, just as Emerson did. The reality that this wasn't going to happen and that we would actually have to find a regular preschool for him someday was a little jarring at first. But then it sunk in - everything was OK. It turns out that OK is a great place to be.

On the bad news front, Emerson has decided that being the least bit compliant is no longer a priority. The little boy who would stop walking the moment he got too close to the street is now gleefully ignoring my commands to stop and running headlong toward traffic. The boy who would get frustrated easily, but at least try hard during therapy sessions, is now throwing tantrums as much at home as he is in the speech therapists's office. During a mobility session with his vision teacher a couple of weeks ago, he started losing it, stomping his feet and yelling. She gasped. "Have you ever seen him do this before?"

I laughed. "Uh, yeah, all the time. I guess this means he's comfortable with you now," I joked. We talked about the possibility that he was acting out because I was around - a conversation that I repeated with his speech therapist a couple of days later. I agreed to step out of sessions, but then the vision teacher mentioned that he was acting up during school sessions as well.

Part of me knows it's just a stage and that I should be grateful he's asserting his independence. But the other part of me remembers all the obnoxious boys I've ever had the displeasure of teaching and all the times I thought, "I will never allow my son to behave like this for other people." He's certainly not at that level yet, but my imagination is conjuring up the worst.

What's hard about him is not so much the defiance, which is normal behavior in many ways, but how to effectively deal with it when his personality is already an enigma wrapped in a mystery and topped with a "What the heck?!" His team of teachers and I spend endless hours trying to figure out what motivates him and why he does the things he does. It's validating to see professionals struggle as much as we do, but it also means we only makes spurts of progress, mainly based on sheer luck.

But back to the positive again. During Emerson's preschool progress report a few weeks ago(before the defiant stage, so it was a purely good report), I asked the speech therapist in the classroom about apraxia. She seemed stunned and said, "I've diagnosed a good portion of the class with speech apraxia - but not him." Around the same time, a friend of ours who is a retired speech therapist brought up my post on apraxia. She felt she hadn't seen definite signs of apraxia during her interactions with him and was concerned that our private speech therapist had given him such a "devastating diagnosis" so quickly. Just hearing her validate the diagnosis as devastating when so few people around us grasp the magnitude of it was a huge relief. But hearing another opinion that it may not be apraxia was even better.

After hanging out with her for a while, during which time Emerson went about his normal play chatter, she looked at me and said, "Some people may say apraxia. I say bull sh**."

I'm trying not to get my hopes up too much, especially since the private speech therapist confirms the apraxia diagnosis practically every other session, but I'll take even a sliver of possibility at this point.

Since I'm finally done with school for the semester, I've been slogging through books with titles like "Boys of Few Words," "Positive Discipline," and "Beyond Sibling Rivalry" (another story). Strangely, the most helpful passage has been from the sibling book. It was about children who get an unfair lot in life and how that can sometimes lead to venting their anger on other people, especially siblings who have an easier time.

I looked down at Emerson and thought about that day sometime in the future when he screams at me "Life is so unfair!" And he'll be right. That doesn't mean I won't discipline him. It doesn't mean he won't still have a great life. But it does mean I will need to be more sympathetic.

And patient.