I had someone ask me if we would take H. out as the skin expanders got larger. The question took me by surprise because I hadn't really supposed we would do anything different than we already do. H. loves to go out and it seems as though it would be adding insult to injury to say she had to stay home because her face looks different. It looks different all the time and I'm not really sure how we would manage keeping one well child at home for over a month.
But the question did give me cause to think about the whole thing, though. I can understand the point of the question. Is it fair to the child to add the comments and stares that will inevitably happen on top of the general yuckiness of the whole endeavor? One certainly doesn't want to add to a child's discomfort.
At least in our situation, I have come to the conclusion that by taking H. out and about with us, we are not really adding to her discomfort. The first reason is that while she does receive some stares here in the US, compared to what she experienced before, it is really nothing. You will find rude people everywhere, but there is a cultural value here that says it's rude to stare even if not everyone observes it. It is usually children who stare the most, but they are also the most likely to come up and ask a question as well. That's genuine curiosity and I don't mind chances to do a little education. I can usually handle rude adults, but for some reason, very few people come up and actually make outrageous comments to me. (This is in comparison to the experiences of others in similar situations... maybe it's where we live.)
There is another reason that H. doesn't stand out as she might, and that is because she travels with her own personal side show. At least that's what it feels like sometimes. We are a conspicuous family. There's just no way around it. We get stared at when we are all out and about pretty much all the time. We have many children in tow, they are not the same ethnicity, we have a pair of twins (yes they still draw attention), other children look remarkably the same age though they cannot be twins, we have physical differences, and we are often out during school hours. Usually passers-by can't decide which oddity to focus on and one more oddity doesn't really make a difference. Because we confuse people, we actually camouflage H.; she is just another child in what some perceive to be a sea of children.
H. also has a winning personality. People just take to her. She greets them with a smile and is so kind and friendly she usually wins them over almost instantly. This happened even in China. It is probably a lesson for all of us that she expects to like people and for people to like her and treats them accordingly... and they reciprocate 99.9% of the time. If we all approached other people this way, the world would be a much nicer place.