On the go, go, go

This past weekend was go, go, go. Saturday was a balmy 70 degree day here in Indy. We decided to head to the zoo. We purchased an annual zoo membership in December after being entranced by the Christmas light displays and zoo hours open until 8pm. Then January and February set in. Frigid, raw cold. No zoo for us.

I think every family with small children all had the same idea Saturday. It was stroller central. It’s funny. I’ve noticed our stroller usage is different than how other parents utilize a stroller. While other parents will use the stroller as transportation for the child, we use it to haul our huge diaper bag, my purse, etc, and have Kaia push the stroller. Unless, like on Saturday, we have Kaia nap in it – which normally I never, ever do because I am a total nap slave. She needs to sleep in her crib. I revise that – I need her to sleep in her crib. I need that break each day. It’s just funny to see all these other kiddos hanging out, chillin’ in their ride, while Kaia, with proud intent, determinedly pushes her stroller along. I want her to have every opportunity to move her body, to know how to use her body for her own transportation.

I had to nurse Kaia a couple times at the zoo and it was pretty inconvenient. There’s no real great place at the zoo to nurse a toddler. We found an empty amphitheatre but later another Spanish-speaking family and children were hanging there too. There was no other place to go so I nursed her there while all the kids played around us. I wondered for the first time if other people think Kaia might be getting a little old to be breastfeeding. I sat her up to pat her back and burp her and stood her up and realized how big she was getting. It was in stark contrast to a woman I had just witnessed in the women’s restroom nursing (or attempting to) an 11 day old baby. The baby looked like a little bird to me. She had to literally show the baby the nipple and after several attempts finally got the baby to latch on. Kaia was like that before too but now is like a little barracuda. She now lifts up my shirt if I make the milk sign to her. There was no way I could’ve nursed Kaia in that restroom. Every flush of the toilets and rocket launch noise of the hand dryers running intermittently would’ve prevented her from nursing.

Instead, I peacefully nursed Kaia in the amphitheatre, while I watched the large-by-North-American-standards Hispanic family kids play contentedly around us. My husband snoozed on a bench nearby. I felt the wind blowing gently through my hair and the sun shining on my face. My little girl suckled at my breast, and I sensed how truly good life was in that moment.

Kaia also continued hippotherapy last week. She was standing! while riding on the horse this week. She’s been riding a different horse than Molly (the white show pony on the first day). Her newest steed is a brown horse with white markings on the face. He has a thinner back. And, get this, his name is Fairy Tale. Can you believe that? Fairy Tale. How cute is that? After hipportherapy we went up to a friend’s house for a playdate. Kaia will be starting a new OT at the end of April and the only time she has to fit Kaia in is immediately following hippotherapy so we'll have to race back home to see her. Until then we're going to enjoy being out and about early in the day on those days. But the good thing is then we'll have Fridays completely therapy-free. I'm looking into another storytime we could go to on those open days or maybe we'll just do other fun stuff. It's so hard to get out with all her therapies. I'm also looking into starting her in a kindermusik class. The girl isn’t a bit overscheduled, is she?

Sunday we went to the circus in the late morning. I was so excited to go to the circus. We were all a bit disappointed, though. I remembered the childhood magic of the circus, but the reality of the thinly veiled animal mistreatment, borderline talent, annoyingly overamplified sounds, and the mixture of the smell of cotton candy and animal dung just wasn’t as magical as I’d remembered. $18 a seat wasn’t too magical either. We managed to stay for almost the entire show then Kaia had had it and got pretty cranky.

We also spent some quality time out in our front yard/driveway this weekend so that Kaia could practice walking/pushing her various toys. Our whole neighborhood comes alive in the spring. We don’t have a playground in our neighborhood so the kids really just play in the street. It sounds like the projects. It isn’t, but I do think these kids could use a decent place to play. All the kids come running when Paul is out with Kaia. He’s like the pied piper. He’s always been like that, even before we had Kaia. Back then it was all the neighborhood preteen boys (who are now, I can’t believe it, in college). Paul is the cool old guy. The guy that knows how to do all the skateboard tricks that their Dads can’t do. Paul had a half-pipe in his backyard growing up so he is more than a decent skateboarder. But all the kids are in awe of someone who is their Dad’s age throwing those kids of tricks, and ask “Are you sponsored?” I know he loves it.

One very cute little neighbor girl always come to see Kaia when we are out. She is such a sweet girl. She is 5 and will be starting kindergarten next fall. She just loves to come see Kaia. On Saturday we had Kaia’s wagon out, her fancy radio flyer wagon. She alternately likes to push and ride in it. The neighbor girl joyously insisted on pulling Kaia around in the wagon.

I had this image watching them as she pulled Kaia in the wagon down the sidewalk. I imagined them older, in high school. The girl is just over 3 years older than Kaia. I thought - maybe when they are older, in school - she will look out for Kaia. Maybe if she sees her in the hall or at lunch she will say hi to Kaia. Maybe she will set an example for how the other kids should treat people that are different. Maybe she will be a guardian angel of sorts for Kaia. I know that’s a lot to put on a 5 year old girl. But I’ve got my dreams.

What I love about this girl is that she never once has asked what happened to Kaia’s lip/nose. She has a bit of a speech issue – she stutters – so maybe she understands what it’s like to be different and sees past that. Or maybe her parents already have had the talk with her and explained things and told her not to ask. I don’t care. I just love it that she loves my girl.

It was so cute how she would copy how I interacted with Kaia. We’ve been teaching Kaia how to climb into her wagon herself (it’s pretty difficult b/c it has the high wooden sides attached to the metal wagon base) and the other girl took it upon herself to teach Kaia as well. She would repeat almost verbatim the things I and Paul said to Kaia. What power we adults have, for better or worse, on children. I forget that sometimes. It surprised me to see that we have that over other children, not just our own.

All in all, it was a pretty good weekend.

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.