Preschool visit part II

Yesterday we visited the church preschool. The beginning of the visit was uneventful. Kaia didn’t seem too impressed or interested in any of it; she just wanted me to carry her around. When I’d set her standing on the floor, she would cling to my legs. After a while, though, she decided she wanted to walk and did so quite well with one hand held. (I was very proud of her!) I'm hoping that by the time she will start preschool next fall she will be walking independently well. I know they would not have the patience or staffing to walk slowly with Kaia holding her hand. They'd throw her in the big six kid stroller and wheel her around everywhere. She'd never get the chance or motivation to walk anywhere. But, I digress. Back to the tour. The preschool director gave us the full tour and we saw a couple of the older classrooms using the big muscle rooms. Kaia was fascinated with watching the children race around and climb over all the equipment. She stood on her own and got very excited when one boy started bouncing a ball. She was smiling at him. I was happy to see her responding this way because it gave me hope that she may actually get something out of the experience of attending; even if it is just delighting in watching or interacting with a typical peer.

Two little girls came over. Their class had passed us in the hall on the way to the gym. They had said hello to Kaia while they passed her walking. I noticed that they, like all the kids who had really noticed Kaia, were staring at Kaia’s lip and nose. I prepared myself for the question. They finally asked, “What’s that?” pointing to Kaia’s incision from cleft surgery. I replied, “That’s her beauty line, her special beauty line.” They looked a little confused but accepted that answer. Then the girl asked, “Why isn’t she doing anything?” I thought, if they only knew just how much it was that she was doing, standing on her own (!), and taking it all in. I just replied that she was watching them all play.

The director said after they had moved on what a great way that was to explain her cleft. Paul and I had decided following her surgery to call it that. We got sick of saying “her incision”, or even worse, her “scar”. I hated that word. We decided to turn it into something positive. I know that other people may not consider it a beauty line. But we do. And I want her to grow up hearing from her parents how beautiful every single part of her is. We honestly don’t even see her beauty line as being different. We just see our little girl, our Kaia. Today was a reminder to me that the world doesn’t. Kids see what’s different, and they will ask. They will probably tease her as she gets older. It makes me very sad that our little girl will have to endure that. It doesn’t matter what I do to try to protect her from it, if I try to put her in a Christian preschool that I would hope would be more loving. People, kids especially, are going to focus on what makes her different. I’m sure many will be cruel. I wish I could make that all go away. I wish I could make the questions and comments stop. But I can’t. I feel bad that I can’t protect Kaia from that.

Adults focus in a different way. They always couch their curiosity in a question. “When will she have her next surgery?” they ask. I’m not sure how to answer them. The truth is that we don’t know if she will have more surgery. But if I tell them that, they assume and ask if it’s a question of insurance, if because it’s all cosmetic from here on out, that the insurance won’t cover it. I’ve explained in several cases that no, that isn’t the issue. Insurance will cover everything. A look of confusion washes over their faces at that point. If it isn’t a question of money, why wouldn’t we have the surgery for her? The normal routine is to have the next surgery at around 4 years of age, before the child enters school. The purpose is to normalize the appearance in an attempt to prevent psychological impact. We just don’t know yet how much it will matter to Kaia that she looks different. We don’t know where she will be at cognitively. We figure, if she isn’t aware of the difference, then exactly for whom are we doing the surgery? Is it really for her or is it for everyone else? Is the sole purpose to make everyone else more comfortable with her appearance? If that’s the case, that’s a lot to put a little girl through for what I think is a ridiculous reason. People have tried to argue with us about this. Paul advised me to stop trying to explain. He said, “just tell them she’s scheduled to have the surgery when she’s 4 and leave it at that.”

Last week Kaia had a team meeting at the craniofacial center. We brought up our uncertainty about future surgeries when they started discussing the expected timeline for all the anticipated surgeries and orthodontia. Her plastic surgeon brought up a viewpoint at her team meeting that I hadn’t given a lot of consideration. It had crossed my mind, but not to the extent that he explained. He said that all the research shows that people will treat someone with a different appearance differently, so much so that their opportunities in life can be seriously diminished. This doesn’t surprise me. I actually did a research project in college that examined how obesity was correlated with job interview perception and subsequent job offers. The same principle applies to kids in the classroom. Apparently there are studies that show how much more attention teachers pay to kids with an attractive appearance. Again, this isn’t so surprising when you think about it. But does this really justify plastic surgery? People may feel differently because it’s surgery to “repair” a birth defect, as opposed to surgery to mold appearance to a societal ideal. But really it’s the same thing when it comes down to it. If her oral structures are functional and the only reason for surgery is cosmetic, it’s the same to me as a boob or a nose job.

Maybe I’m in denial or maybe we’ll feel differently over time. Her first surgery was horrible. For her and for us. The last thing I want to think about is how many more times we’ll all have to go through that again. What I know for sure is that we will consider everything for our daughter. We agonize over every treatment decision for her. We’re not going to take this lightly. We’ll consider all the benefits and risks. All the pain she’ll have to endure either way – physical and psychological. So, if you are a friend or family member, please stop asking about her future surgeries. I know that sometimes you are asking from a place of love and concern. But trust that we will make the right decision for our daughter. What we need most is your love and support. The rest of the world may focus on her cleft. We really hope you won't.