My baby’s face is worse than I expected. It’s really bad. When we first found her, I sent her photo and paperwork to a local doctor to get an idea of what we were facing medically. He wrote back that it looked like she had Amniotic Band Syndrome. Apparently, when the amniotic sac ruptures, its fibrous tissue can surround and constrict parts of the developing baby’s body. In Qing Bei’s case, the band went across her face. You can see a circular line where the band was. On her right side, there is an indentation—really an open hole, going up from her mouth, across her cheek and into her eye. She has no eye, but she has eyelashes and a working tear duct. I can’t tell if she has a cheek bone, and I’m certainly not going to scare her by pressing on that cheek, but I don’t think it is there. The worst part cosmetically is that there is an open hole in her cheek that opens into her nasal cavity, and her upper gum/jaw bone is totally mal-formed. Her teeth are slanting upward toward her nose. It looks bad, but the other side is actually more problematic. On her left side, the band cut into her cheek so that her mouth is extra-long. This is a problem because she can never close her mouth so she can’t always hold food or drink. I was worried that during eating the food would get into her nasal cavity, but it doesn’t seem to be a problem. The problem is the stuff falling out all the time. She really tries to keep it in, but there is just no way.
Every time I look at her, I worry about her surgery. I am sure they will have to wire her jaw shut. Plus, that upper jaw bone is going to have to be cut, or she will have teeth growing into her upper cheek. She is in for so much pain and discomfort. I’m normally not prone to worrying, but I worry about this. I'm having a hard time accepting it.
Another thing I am having a hard time grasping is how she can be such a terror, but has also worked her way into our hearts irrevocably. My kids adore her and she hates their guts. They constantly comment on how cute/adorable she is and the only reason they don’t clamor for her attention is because they know it would scare her. Bill is fantastically patient with her, even though I know her non-stop whining is driving him crazy. As for me, I wanted her from the moment I first saw her picture. People keep asking us why/how we adopt like this, but the real question is why/how we could not?? We are completely under compulsion. I couldn’t leave this child any more than I could cut off my own arm. Plus, that fierce protection thing kicked in as soon as she walked into the room, shrieking. If anyone tried to take her or hurt her, I would tear them to pieces with my bare hands. You’ve heard of Tiger Mothers? I’m a Dragon Mother. This, even though my little dragon is sitting in a corner of our hotel room as I write this, screaming inconsolably and the only thing she desires in all the world is to be far away from me.
….Anyway, Wednesday was a better day. She ate some watermelon at breakfast and by lunch/dinner she was eating normally. She is still picky, but at least she is getting proper food down. We also gave her a bath. She didn’t particularly enjoy this, but she did let us do it. It was so, so nice to get that smoke smell out of her skin and hair! Then, I cut her some bangs. Her hair was constantly in her face and we thought about leaving it, but I hate to teach her that her face should be covered up. I know that people take cues from eachother. If she is ashamed of her face, it will make other people embarrassed about it too. …It’s much better now.
We stayed in the hotel for most of the day and she seems to hate us less. She spends most of the day chanting, "I want to go home” in Chinese. I can block this out, but I know it is driving the rest of the family nuts. Bill took her for a walk around the block and they both enjoyed it. However, we went to the Chinese Wal Mart here about 3pm and she was a terror. She had a huge melt down in the middle of the store, screaming, stomping her feet, etc etc. Once we got home, she was better and actually didn’t cry all evening. Bill made the connection that she does not like to be around crowds. This is a shame, because there is just no way to avoid them here, unless we stay in the room all day long.
She started screaming again at bedtime and I thought we were in for it, but she only lasted about five minutes and then she laid down and went to sleep. She will barely let me touch her, but she does let me take care of the essentials (feed, dress her etc.) and she follows me everywhere. Progress. Slow but Sure.