Good, Bad, Good, Bad

I'm cross posting this on West Wind as well.

Okay, first the good news – we finally had our initial meeting with Bell’s cleft surgeon on Monday, and it looks like Bell won’t need more surgery until she’s six or seven. The doctor wasn’t totally thrilled with the work done on her palate (apparently the holes left in her gum line were much bigger than it is common practice to leave in the U.S.) but she felt it was probably adequate, and we would be able to wait to address it and combine her bone graft surgery with closing up the purposeful holes. She also felt that her lip had been done very well and didn’t need a revision for now. We will be taking her to an ENT soon to decide whether she needs tubes in her ears – about 90% of cleft affected kids do – but I’m optimistic that she might not – she hasn’t had an ear infection since we met her, our pediatrician has checked her ears a couple of times and never seen fluid, and her hearing seems fine to me. But we’ll see. And of course, this may all have to be reconsidered once Fang Fang has had a chance to get some intensive speech therapy – if the holes are causing problems with speech, or her top lip doesn’t seem to have enough muscle, then we might have to do some work sooner – but for now we can breathe easy for a bit. Our doctor, Dr. Wu, was great. Very open, and warm and approachable. She took a lot of time with us and didn’t make me feel pressured or worried at all. She also can speak and read Chinese, and she translated Bell’s Life Book right then and there for us. This was thrilling – we finally learned when her palate had been repaired (just before her first birthday) and a bunch of other milestones. But the fun ended when Dr. Wu told us that Fang Fang had developed complications – an infection – during her first lip surgery – and had been left in the hospital for a month.

This news took a while to sink in. In fact, I’m still trying to process it- trying to imagine my baby girl, not even a year old yet, left alone in the hospital for a month. I mean, obviously, there had to be nurses and doctors who were caring for her. She pulled through and seems perfectly healthy now. But I doubt that the orphanage could have possibly spared a nanny or caretaker to be with her during that time. She was also returned to the hospital for her palate repair about a month after that – which must have been so terrifying for her. The person writing her life book noted that she wouldn’t eat once she was home from the hospital, and cried every time she saw the rice bowl for weeks after.

I’m trying not to harp on this too much. She’s healthy and thriving now. (Though this goes a long way in explaining her utter terror of doctors and being medically examined). But I went to bed thinking about it last night. And it was the first thing I thought of when I woke up this morning. And amidst a whole range of negative emotions about it, I also feel this incredible awe over my daughter’s tenacity and ability to survive and thrive. Still, it makes me so fucking sad to think about her facing pain and fear alone. I wish that someone (me – or anyone else who loves her!) could have been there hold her through all of it. Though who knows? Maybe there was. I suppose I shouldn’t jump to conclusions. But with this information in hand, it is a relief to think that there is a good chance we won’t have to do more surgeries until she old enough to have a lot more grasp of what’s happening.

The other good news, totally changing the subject for a moment, is that, after a pretty extensive process, Y and I have signed with a manager. And he’s awesome and smart and with a great management agency, and has us very excited about our work prospects. I still can’t really talk publically about the bigger good news that’s happening with our first script – but hopefully I’ll have something to say next week. Or not. But it’s all good and exciting and I feel like we’re about to really shoot forward in our work.

So, on the heels of our appointment with Dr. Wu, I was at The Bakery (I swear – I’m really not there all that often – but it just ends up being blog worthy when I am, for some reason) and Bell and I were having some lunch after our little Mommy and Me Music Class (which is very sweet and nice and taught by Spike’s music teacher from his school who used to be a famous pop star in South Africa) and as I walked upstairs to find a table, a little boy, about four or five, I’d guess (he looked older, but he was there during school hours, so I’m thinking he was pre-school age) immediately ran up to us, took one look at Bell and said, “Chinese, huh?” I was a little taken aback – but not entirely sure of what his attitude was- so I just said, “Yes, she was born in China,” and then sat down and let Bell toddle over to where the little boy and another little girl were playing (rather wildly, I might add). And at first it was totally fine – I mean, they were throwing wood blocks around, but didn’t seem to be aiming at my daughter, but then, all of the sudden, the little boy shouts, “Look at his” (he thought Bell was a boy) “nose! It’s so flat!”

Now, I’ve had this happen a couple of times since she’s been home. And it’s been okay. It almost always comes from really young kids – like three year olds – and they never seem to be making a judgment –just observing – and though it puts my back up a bit, it’s never been a problem before. They say it once, then they go on with whatever they’re doing, and it’s over. But this little boy would not shut the fuck up. “Look! Look! Look at his nose! It’s flat! It’s so flat! Hahahahah!” (all the while pushing on his own nose). And he kept going and going – laughing at her, talking about her – pointing. And his mother – who was maybe three feet away with her back to us, talking to a friend, didn’t even bother to turn around. “Listen,” I growled at him, “It’s not nice to laugh at someone! You could hurt her feelings! And, actually, I think her nose is beautiful!”

And you know, he shut up for a second – looked maybe a little scared because I used my Mean Mom voice – but about five minutes later I caught him staring at her with his finger pressed up against his nose again and his mouth opening to say something else - and that’s when I just took my lunch, and my baby, and just fucking left. Because I was afraid that if I didn’t, I would be moved to say something very, very angry to this little kid and/or his mom.

Okay, the kid was terrible. No doubt (and his mother was worse for letting it go on). But I sometimes wonder how much of this we’re truly going to get. I bring Bell to Spike’s school all the time – and all the little girls – kids who don’t necessarily know me or Spike well, come gathering around, talking about how cute and beautiful she is. And not one of them has ever asked about her scars or her nose. Which I assume to mean that they are not really something that stands out so much for them to notice or wonder about. Ryan had one mother ask if she had fallen down and had a fat lip. I had a couple of very young kids say something about her nose. And that’s it. And you know, before she got here, I was prepared for this – I had all sorts of speeches in my mind – from the scientific truth speech to give to little kids who were just curious, to a big old How is This Your Fucking Business? speech aimed at cruel adults – but then she got here and it honestly felt like a non-issue. She was gorgeous. No one had anything to say but compliments. I relaxed, - my guard was down - and then something like this happens and I am taken by surprise. And obviously, I can’t be impartial – I’m her mother – and I think she is stunning. I think the surgeon who worked on her did an incredible job. I think she is naturally breathtakingly beautiful. I can spend hours staring at her face and it brings me nothing but joy and wonder. And when something like this happens – it’s like a punch to the gut. I wonder just how much of this we are in for. I wonder what other people see when they see my exquisite daughter. I wonder if they are focusing on her beauty or her scars (which, by the way, are beautiful in their own way as well). I wonder how much of this kind of utter bullshit she will have to put up with. And I wonder about the best way to get kids and people like that to back the fuck up and shut the hell up. And you know, I could fucking care less about what other people think – but I do care about what Bell hears. I do care about her getting hurt. And that’s when moments like these feel like a test.

Anyway, again, I don’t want to harp on this, either. 99 people see how beautiful she is, and one ill mannered little boy makes comments on her nose (and, in retrospect, her “otherness” i.e. his comment about her being Chinese – which should have tipped me off from the moment he opened his sassy little mouth). And luckily, she is still too young to understand what he was talking about. But it does put me back on the defensive. And when I told Spike about it, he said, “I would have said, ‘STOP TALKING ABOUT MY SISTER THAT WAY!’ And Mom, I think her nose is really cute.”

Any advice from all you btdt folks would be appreciated.