Friday, May 22, 2009
I love traveling...partly because I don't have to cook or clean up after myself or face bills or meetings or homework for a given amount of time. And partly because...I don't know how else to describe it except through the senses. I love the way all the noises are heightened when you pack a car full of luggage in the pre-dawn hours, I love the smell of hotel rooms (probably a combination of an ancient air conditioner running and bodily odors from the thousands of people who stayed before me, but whatever), I love the satisfaction of eating a big meal in a strange restaurant after walking all day...I could go on and on.
As I mentioned before, we traveled as a family to Chicago a couple of weeks ago for our first-ever albinism conference. We went by train, which is my favorite way to travel. There's something romantic about train travel - it reminds me of the old movies where the doe-eyed heroine stands on the station platform waving goodbye to her soldier one last time before being enveloped in a cloud of white steam and smoke.
The reality is that you stand in a dingy glass box until the train pulls up, then you heave your luggage on board and try to find a seat with the maximum amount of leg room and minimum amount of stains. I travel to Chicago on the train a lot for school and despite the bare minimum of luxury, I wish I could take the train everywhere.
This particular trip was exciting because neither of the boys had ever been on a train. Fionn was more impressed with the scenery whirring by then Emerson, but Emerson still found plenty of ways to entertain himself. Unfortunately, every way involved making us walk up and down the length of the train. For nearly four hours straight.
Pretty soon he developed a routine where he would jump at every passenger as he passed them, giving out a mild screech in an attempt to "scare them." Luckily the train was loud enough that it wasn't obnoxious, but I could still tell when he and Robbie were coming toward me by the succession of "ahhh"s that got closer and closer. Half the people smiled sweetly or waved - the other half were obliviously listening to iPods or crunched against the window sleeping. Emerson didn't seem to care - or else couldn't see their facial expressions - he was having a blast. In fact, he spent a few minutes jumping up on his seat to play peek-a-boo with the man behind him, then falling over with laughter. He never noticed that the man was asleep through all this. I guess sometimes low vision has its benefits!
After a long day of traveling, we collapsed into our beds and got a few hours of sleep before getting up and repacking everything again. I immediately wished we had stayed an extra night so I could have some recovery time, but such is life.
The conference had fairly good attendance for only being a "mini regional" conference and had some useful information. For example, we learned about a new study on albinism going on at the NIH in Washington, D.C., so we're definitely going to get the boys involved in that. Not only do we get a trip to one of the greatest cities on earth, we also get to help researchers better understand a rarely-studied condition.
The other exciting part of the conference was meeting fellow parents. One woman had a little girl only a couple of months older than Fionn and the two of them hit it off (you know, as much as two infants can). They were fascinated with each other, which was adorable to see. Unfortunately there weren't any children with albinism Emerson's age, but he made many "pigmento" friends.
(Annie and Fionn in the lunch line. Yes - I always keep a cheesy grin on my face.)
At one point, the parents broke into their own group for discussion time. Most of it was spent on IEPs in school, which I'm not dealing with yet and therefore try not to think about too much. But during this discussion, one veteran mom began to talk about the importance of taking care of ourselves so that we can better deal with the issues that come up around albinism. As she listed all the things we as parents have to deal with - stares, comments, school issues, adaptive tools, etc. - I found myself choking back tears. It hit me that for once in two and half years, I was surrounded by people who knew exactly what I was dealing with. Of course many parents talk over email and webboards, but having a conversation with someone in person is so much more meaningful.
It was also wonderful to interact with people and not have to launch into an explanation about albinism. Someone would "cootchie-coo" one of the boys and we'd wait for the inevitable questions...then realize that in this crowd, we didn't have to say anything.
I only wish it was longer, but at least it gave me the motivation to go to the national conference in D.C. next year. We should have gone to the one last year in Las Vegas, but I didn't think it would be helpful with Emerson being so young. Plus, who in the hell plans a conference for people who are extremely sensitive to the sun in Las Vegas...in July?!
As a side note to our train adventure, Emerson has decided that his love of train travel does not extend to Thomas the Train. He has recently become interested in television (oi vay - another topic for another time), and one morning PBS aired an episode of Thomas the Train. As soon as the trains started talking, Emerson screamed bloody murder and threw himself into my arms. I immediately turned it off and he was fine again, but I wondered if it was just a fluke. Then, yesterday, a commercial came on for Thomas and within seconds he was screaming again. I guess I can't blame him. A train with giant eyes lolling around its head and a claymation mouth freaks me out too. I'm not sure if he's still on, but when I was kid, Ringo Starr played the host/conductor, which only added to the "high on acid" effect.
I think we'll just stick with the real thing for now.