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.

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.