Summer Graces

First of all, thank you all so much for the incredibly kind and warm response to my last post.

Second, sorry for reacting to your generosity by going silent for several weeks.

But now where were we?

Ah, right. Summer.

So every summer since the kids were born has gone pretty much the same way. I start it out filled with energy and armed with a long list of all the educational and enriching activities I’m going to do with them. By mid-summer I find myself repeating phrases like “Wow, the summer is really flying by!” and promising myself that I will do those educational activities any day now. By the end of summer, that ambitious list has been completely abandoned and my catch phrases have just given way to long strings of expletives.

Somehow the void of time that was school is instantly filled by some sort of “busyness” the way that wet sand rushes in to erase a footprint on a beach. I can’t quite wrap my head around how our schedules are going to readjust to accommodate school resuming soon, but I know it has something to do with a constantly dirty house and a lot less sleep.

All that whining aside, there have been some moments of summer grace that I’m clinging to. Summer grace #1 was our trip to St. Louis for the albinism conference.

For me, the very best moments of childhood involved waking up when it was still dark and hearing the muffled sound of suitcases being zipped and car doors closed. In that moment my anticipation became so electric the very air seemed to snap and crackle.

Of course now I realize that that moment of excitement was made possible because the adults had already spent hours and hours planning and packing and stressing. For parents, there is less snapping and crackling and more groaning and moaning.

Luckily the kids’ excitement over taking the train to St. Louis was so palpable that even as I stood bleary-eyed on the platform at the crack of dawn, I couldn’t help but bubble with their anticipation. Their enthusiasm about the train ride didn’t wane through the 13 hours of traveling and layovers that day and it continued on the equally long trek home. Any trip on any form of transportation is exhausting with three kids (especially a toddler), but the train was so much better than a car or plane any day. Damn those lucky Europeans with all their fancy pants trains.

But I digress.

The conference of course was wonderful – connecting with old friends, meeting many new friends, attending informative sessions, and in general just soaking in the joy of having so much white hair in one place. There were some rude or stupid comments and plenty of staring when we went out as a group, but for the most part we enjoyed our blissful albinism bubble. 

The boys were much older this time compared to our first conference in D.C., so I was most interested to see how they would handle the kids’ programs. We have talked openly about albinism in the past, but they hadn’t seemed interested in the topic. I chalked it up to the fact that we live in a very diverse city, they have each other, and we are pretty active with our Michigan chapter of NOAH.

That is why I was a surprised that Fionn walked up to another little boy the first day of the conference and said, “Hey, you have white hair just like me!” They never said anything about albinism the rest of the trip, but it was interesting nonetheless.

A month later, they were running around a playhouse in the ophthalmologist’s office when a new boy walked in and started asking them why they have red eyes. Emerson did what Emerson does and ignored him. Fionn stopped and responded in a very matter of fact tone, “No I don’t, I have blue eyes.” Then he smiled and added proudly, “And I have white hair!”

Is there an emoticon for heart swelling? If so, insert it here.

Moment of summer grace #2 was on a camping trip with friends. It’s pathetic to say that we started planning this camping trip back in February as a way to reunite with college friends we hadn’t seen in years. The pathetic part is that despite months and months of planning, half the people still canceled at the last minute and we were down to three couples/families. Despite the setback and despite the intermittent rainstorms throughout the weekend, we had a great time. The kids loved it all too: eating s’mores, sitting by the fire, sleeping in a tent and playing in the canoe (whether or not it was actually in the water).

Even though the highlight of the weekend was spending time with our friends, my moment of grace actually happened thanks to a large group of German Baptists (if you are confused, think Mennonites) that set up camp across from us. They had the foresight to create a dining area under a huge white canopy so that they could stay together even if it rained. We looked on with jealousy as we retreated to our tiny individual tents every couple of hours.

As we were getting ready for bed the second night, a new storm starting brewing and the camp managers came around to say that it would be a big one. We were instructed to take cover in the bathrooms, which was not reassuring. A few minutes later, the wind started thrashing the trees and the lightning and thunder began a booming symphony that went on uninterrupted for hours. We huddled in our tents and told the kids it was fine to go to sleep, but I have to admit a tiny part of me was freaking out.  I love a good storm usually – just not when I have three kids in the middle of it protected only by a piece of cloth and a few flimsy poles.

Finally the worst blew over and I started to breathe again. At that moment, over the still rumbling thunder and drizzle of rain, I heard the sound of people singing. The German Baptists were sitting together under their canopy, completely unruffled by the storm, and now they were singing hymns.

By that time the boys were asleep, so we took Miren out of the tent and walked to the beach across from us to watch lightning strike over the water in the distance. We watched the sky and black water light up every few seconds and we listened to hymns. It was…. surreal.

A few minutes later, the singing stopped and their children came out onto the grass with sparklers. Through the rain and mist, it looked like frenetic fairy dust that swirled and exploded and danced. Apparently my always-good-citizen husband had given them one of our boxes of sparklers earlier that night and the kids were ecstatic. He had also offered them canoe rides that day, which they seemed excited about but never took him up on it.

After our strangely magical night, the Baptists returned Robbie’s generosity by bringing over a batch of homemade donuts that had just fried. They were the most amazing donuts I have ever eaten, although I still can’t figure out how you fry donuts while camping.

So finally to summer grace #3. Even though our camping trip had been on a beach, the crazy weather this summer had caused an algae bloom that prevented us from swimming. Last weekend we finally got a chance to swim on a local lake for the afternoon. It was a tiny bit cold for lake swimming, but we dived in blue-lipped and shivering nonetheless.



The moment of summer grace came watching Miren explore the beach. She is an exhausting handful all the time, but she is also refreshingly curious and fearless. I’m not sure if it was five minutes or an hour, but I just sat there watching her squeeze sand between her toes, walk backward to examine her footprints, squat down in the water and let the tiny waves lap at her back, taste test some washed up plants (did I mention she has really fast hands?), and poke at debris with sticks.

This probably seems like a strangely inane moment to focus on, but I’ve been thinking about it a lot. How sad it is that we stop exploring the world like that when we get older. How sad it is that I can’t be that present in the moment more often.

I hope we get to go back to the beach and slip in another moment before school starts…or maybe we’ll have other equally good summer moments. But in any case I’m holding tight to these for all they’re worth. To do lists be damned.

On the Blog Again...

So last summer I took an unexpected break from blogging for a couple overwhelmingly busy months (as if I have any other kind).

After the summer was over and the fall routine settled in again, I sat down to write my "sorry I was MIA all summer" post. Then it dawned on me: no one - not friends, family, or distant readers - had commented about the fact that I disappeared for months. I thought about this for a while and realized that Facebook was sufficient for keeping loved ones up to date and my blogging life had probably reached its natural end. I decided to write a final post and call it good, but that post just wouldn't come.

For some reason, people have recently started asking me what happened to the blog and it got me thinking about why I started it in the first place. Certainly not for the fame and glory and money (although if anyone wants to offer me that, I won't refuse). Mainly it's a diary of our life. I realized that so much of the boys' first few years were documented, while Miren's first year will soon be fuzzied by mommy amnesia.

So I'm back - even if it's just to satisfy my own navel-gazing and family journaling needs.

With that in mind, here are a few of the most important moments of our last year...

We got the world's coolest bike. And despite my tricycle past, I can actually ride it:

Took a trip to Mackinac Island with my parents:

In front of the Mackinac Bridge.

Held Miren's Dedication:

Celebrated Robbie's 30th Birthday:

Had one family reunion or family party after another:

Celebrating Grandma Marion's 80th Birthday

We remodeled our only (and incredibly tiny) bathroom, forcing us to travel to our neighbor's empty bathroom (they were in Europe) every night for bathtime for months. Our children decided that most of the trips needed to be done naked, which our neighbors doubtless appreciated:

The crappy "Before" picture.

The equally crappy "After" picture.

Fionn started his first year of preschool:

  

 

Emerson made huge gains in all areas and got a wonderful kindergarten placement for next year. I pushed for more testing in the fall and - as I suspected all along - he qualified for autism spectrum services. More on that later:

The handsome man himself.

Miren learned how to do all the important baby things:

Miren also learned that her smile could help her get away with pretty much anything:

Once mobile, she quickly dispelled the myth that at least one out of three kids is bound to be easy:

Miren enjoys her first Popsicle.

I celebrated my 30th Birthday. It was not quite as exciting as Robbie's :) :

We lost our beloved "Mama:"

Mama meets newborn Emerson for the first time.

Fionn earned the title "World's Best Big Brother:"

Fionn shares his Valentine's sucker.

We enjoyed visiting friends and drinking good beer in Wisconsin:

Fionn enjoys the view of Milwaukee from his "bubble" in Discovery World.

We decided to rip up our entire yard and fill it full of edible plants and perennial flowers (pics coming).

The boys got to go on their first fishing trip thanks to dad and papa:

I continued to slog through grad school classes and finally decided the focus of my ministry will be the environment:

I started a Michigan chapter of Kidical Mass (kidicalmass.org):

The kids help me run the booth at "Bike Bash."

Families setting off on our first ride.

And in general we had some crazy fun:

Miren's first Easter egg hunt.

April Fool's Parade

Robbie brought the boys some wrestling masks from Mexico.

Christmas chaos.

Feel more caught up than you ever needed to be? Good. Now hopefully I'll write again before next year.

Happy Father's Day

Seven years ago, I was sitting in a bowling alley on some godawful date and I started thinking about what qualities I wanted for my future husband/father of my kids. I had just escaped a horrible on-again off-again relationship of more than two years, so I already knew what I didn't want.

As I stared into the computer screen pretending to keep score, I suddenly thought, "I want someone as good as my dad." I had dated a wide variety of guys, but no one had ever come close to being as good as my dad.

A few weeks later, I met Robbie. Now I have two of the world's greatest men in my life and two little boys who will follow in their footsteps. Happy Father's Day!

In the News

High school student has never let vision impairment affect his goals...

Miren's Birth Video

As if the pictures and long blog post weren't enough, I made a video too. :)

WARNING! WARNING! WARNING!


You will see my butt if you watch this video. There is no blood and nothing pornographic, but there is my butt. I thought a long time about whether I was ok with sharing this and decided that it's important to let people see what a natural homebirth looks like if they are interested.

Plus it's not nearly as bad as when I gave birth to Emerson and Robbie uploaded our entire camera onto photobucket without editing out any of the nipple, crotch, or otherwise gory pictures first. Then he proceeded to send the link to our ENTIRE email list - including my classmates, neighbors, church friends, family members...well, you get the idea. Luckily I realized it and deleted the pictures before everyone saw them, but enough people saw them to permanently strip me of my dignity. Hence, I present you with my butt.

Shout Backs for Shout-Outs

I'm trying to teach Emerson how to deflect annoying questions about albinism. This is how our teaching sessions have gone so far:

Me: Emerson, where did you get that white hair?

Emerson: Where did you get that white hair?

Me: No, you say, "From the postman!"

Emerson: You say the postman!!

Me: No, just "the postman."

Emerson: Postman!

Me: Great! Let's try it again. Emerson, where did you get that white hair?

Emerson: Where did you get that white hair?

Me: sigh

I suppose we're making progress considering he now walks around the house randomly shouting, "The postman!!" with great glee.

I got the idea to give him some coaching from a recent NOAH webinar called "Stares, Smirks, and Shout-outs" given by a young woman with albinism. She suggested creating a "comeback bank" and helping kids to practice so they can respond quickly on the days they just don't feel like educating every person and entertaining every ignorant question.

Since I am their spokesperson right now, this exercise would be equally helpful for me. Most of the time I do end up entertaining every question or stupid comment due to a combination of feeling obligated and not being fast enough on my feet. Let me be clear that since the boys are still innocent (and clearly adorable in my unbiased opinion) little kids, no one has been purposely mean. While I would like to respond to stupid questions and comments by punching the person in the face or shooting back some searing insult, it just isn't appropriate. Not to mention I have to model for the kids how to be civil and thoughtful citizens - even when we're having a bad day.

During the webinar many participants wanted suggestions of what adults with albinism use for their own comeback banks, but there were not a ton of suggestions. Probably because coming up with standard answers that are effective without being too insulting is a fine art.

If you want to educate someone, you are going to have to give a standard explanation and then buckle down for the numerous questions that will follow. We've tried handing people a business card with info about albinism to get around this, but usually they will follow you and continue to ask questions about what's on the card. Or you find yourself unable to leave (i.e. on a bus, elevator, etc) and there ends up being an awkward silence while they read it and decide how to respond.

On the days you don't feel like talking, the comeback has to effectively and politely shut down the conversation...or else you might as well have started with the education answer in the first place.

If it can make us chuckle about our strange lot in life at the same time, all the better. Hence, the postman.

I know many of my readers are far wittier than me, so I am putting out a call for suggestions to complete our comeback bank. Here is a list of the common remarks/questions we get so far:

Where did they get that white hair?
(I say "The postman." Robbie's suggestion is, "Yo mamma." Feel free to vote on which answer is better, or come up with an even better answer.)

Why do they have such white hair?

I used to have hair that white! (Sometimes they add: Don't worry, it will change when they get older.)

Is that their natural color? Or...Do you dye their hair? (You might think these people are being sarcastic. Let me assure you, they are not.)

Why do they have red/pink eyes?

Are they one of those albinos?

From children, who are the right size to make eye contact and thus focus more on eyes than hair): Why are their eyes so weird?

We don't get this one yet, but apparently it's the most common shout-out that adults get:

Hey Caspar! or Hey Albino!

It may be hard to believe people have so little creativity, but considering some guys once drove by and shouted: "Hey Bookworm!" because I was reading a book on a college campus, I believe it.

Happy Mother's Day

To the world's most beautiful mom