So Sunday afternoon we load up the car with kids and diapers and sippy cups and snacks and wipes and hats and the wagon. We weren't going to the beach for the weekend, just the park for a half hour or so. The twins seemed content sitting in the wagon with their milk watching Ella run around with the dozen or so other kids climbing up ladders and flying down slides. About 20 minutes after we arrived, another family showed up with kids probably a few years older than ours and they began to play. As the parents got closer, I noticed that they were wearing a shirt proudly displaying the name of a Great Strides team. The only restriction that folks in the CF world have is that they're not supposed to be around others with CF because they can very easily pass the harmful bacteria that they carry in their lungs to one another. I don't even know if this family was a CF family or friends of a CF family or just happened upon the t-shirt or what, but I immediately worried that one of those kids had CF and would come to close to Drew. We walked away for a while and went to another part of the park, but Ella wanted to play on the slides so we went back. Martin suggested that we introduce ourselves to them, just in case one do those children did have CF, to protect both of our kids. I didn't want to do that. I just didn't want to make a big deal of it. I just wanted to stay away. I was worried that if we introduced ourselves and they didn't have CF that they would somehow be connected to CF and be sympathetic and want to come over and meet Drew and to be honest, I just am happier when people keep their distance from him. Better safe than sorry, right?
When we were at the CF event on Friday night, little Sarhea who has CF was dancing with everyone, letting people pick her up, giving hugs to perfect strangers (myself included) and just having an awesome time. I wish I was more like her mom and not so terribly paranoid about Drew catching something from someone. Maybe its different, with all of the other stuff Drew has going on making him slightly more susceptible to bacteria because of his inability to properly clear his airways, at least according to CF standards. And I do hope that as he gets older and learns to keep things out of his mouth that I will ease up a little and just really try to teach him to use sanitizer and wash his hands regularly. I don't want to keep him from doing anything, I really don't, but man do I worry.
The incident at the park (I shouldn't even call it an incident because nothing happened) got me thinking about the Great Strides walk. There will be dozens of kids there with CF. They ask that people with b.cepacia not attend because thats a potentially deadly bacteria that CF people can carry and very easily transmit to others with CF. But outside of having that, the only recommendation they make is that CF people stay at least 6 feet away from other CF people. Okay, not a total problem, unless you're 1 and love to play with other kids. I dunno, I just see it being totally stressful for me and frustrating for Drew when I don't want to take him out of the stroller and trying to keep anyone and everyone from touching him when he's the reason we're all there in the first place. This is the only CF event that includes lots of CF patients, because of the risks that patients pose to one another. I just don't know what to do. On one had, this is his day! All of these people are here supporting HIM! On the other hand, if he goes and he gets sick, that sucks. I can't keep him in a bubble, I know I can't, but I have to do everything I can to protect my baby.
I know people will have lots of opinions on this and half of me would love to hear them, in support either direction. On the other hand, you just can't possible get it unless you are in my shoes. I don't know what we will do. I had all intentions of bringing him with us to celebrate him on this day. Maybe I will just need some wine to ease the anxiety before the walk ;-)