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.


  1. I'm pretty sure that whether everything on your list gets accomplished or not it will work out just fine. You have your whole life to get things done and such a short time when when your children are small. Nothing is more incredible than watching their little personalities develop. Don't forget to stop and enjoy. Rick's pics are amazing! I am so glad the conference was a good experience.

  2. I can't get over that you are calling yourself a "boob." I might have to ban you from calling yourself that, how about an emotionally connected person! :)