Festivals, Light, and Noise

Today was spent entirely downtown at the Rivers & Spires Festival.  I was volunteering at the ClarksvilleMommies.com tent in the Kidz Zone, so I was there first thing at 10AM.  My first shift ended at 1:00, so Chad came down with Asher and Sebastian so we could just walk around and enjoy the festival.  The last time we went was three years ago, pre-Asher and pre-Sebastian, so it was due.

I have mixed feelings on this sort of thing.  I feel like Asher should get out and be able to participate in fun things like this - after all, we grow through experience.  On the other hand, there are certain things that are really difficult for him or that upset him, so then I wonder if it's really benefiting him or if it's just putting him through it for no reason.

There were two main issues with R&S: light and noise.  Asher has always had a sensitivity to light.  I remember the very first time we were able to take him outside - at four months old.  We had been moved over to "Pod A" of the Vandy NICU and his daytime primary, Gina, took us on a walk in the little garden that was adjacent to our new digs.  We have that happy moment documented on video, of course.  You can watch it now and see his desperate attempt to get away from the sunlight.  In all fairness, when you've spent four months indoors, going outside is bound to be a shock; however, even as he came home and was out more and more, he would still squint his eyes shut and try to turn his head to escape the sun.  Come to find out, light sensitivity is not all that uncommon in kids with CFC.  And, as with everything else, there's a broad range of what it looks like over time.  Some kids eventually adjust, and others remain light sensitive.  The joys of a rare syndrome with outcomes all over the map.

Asher's sensitivity to noise has lessened over time.  He used to freak out over what felt like the slightest increases in volume.  Luckily, it was fairly easy to soothe him and calm him back down, but things like going out to a restaurant were, for awhile, not an option.  Now I'm happy to say that Asher can join us at O'Charley's and sit and play happily in his highchair while we enjoy a nice meal that someone ELSE made.  Really loud things can still get to him, though, and let's face it - festivals are not known for their quietness.  Asher did really well today, however.  He only got upset a couple of times - once near the bouncy houses full of happy screaming children, and the other time when we stopped on the street to chat with some folks and it turned into one of those situations where you have three different conversations going on at one time and everyone slowly gets louder and louder so they can be heard.  Those can make me want to cry, too, so I don't blame him.  ;)

All in all, we had a great time, and we'll definitely be going again next year (hopefully with a CM explosion of presence!).  For now, I am dead on my feet with my first sunburn of 2010.  I think a long, hot bath is in order.