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Monday, November 26, 2012

LPA Chapter Convention: A newbie's perspective

The week after we went to Madison, J took the train out west to visit Juju for a week. After he bought his ticket, I realized there was an LPA chapter convention in the Twin Cities. I thought about traveling with two little ones for the weekend, and decided it was worth  a shot.

The hotel where the convention was held had a wonderful pool area. It had a huge hot tub, a big regular pool and then a zero-depth pool with a slide and lots of water toys. This last one made it very easy for me to make sure both kids were safe and having fun, since I didn't have to hold on to both of them at all times. We spent many hours in the pool over the course of the weekend.

I'm not an outgoing person at all, but for some reason I wasn't nervous about attending the convention alone. I suppose because I knew we had an immediate conversation starter. I was a little concerned about saying or doing the wrong thing, since this was a new social situation for me. For example, I found myself leaving all shoes with any sort of heel at home- it seemed rude to widen the eye-level distance between myself and anyone I would meet. I did have a couple of awkward moments. The first time someone asked me if I knew what kind of dwarfism Belalu had, I said "yes, hypochondroplasia?" as if talking to someone unfamiliar with the concept of skeletal dysplasias. Their response: "oh, hypo," reminded me that many people there would have heard of it, and I could just use the shortened name. The first night we played in the pool, three young girls were tossing a ball back and forth and Belalu was very interested, so at one point, a girl presented her with the ball and said "do you want to play, too?" As soon as I said "oh, she's too little to play," I felt like the sentence just hung in the air. Has this girl heard that before in cases where she wouldn't be too young to play, but might have been perceived as such? Did she even think twice about it, since she probably knew what I really was trying to say, and I was just too worried about being cautious and PC?

It was kind of like middle school in that way for me. I was hyper-aware of how I said things to/about people, nervous about offending someone unintentionally or saying the wrong thing. Socially, there were clearly people who were friends and others who were not, even if their kids were similar in age and they lived near each other, so I found myself wondering if there was a past history there that I didn't know about, and if I was choosing sides without knowing it. Overall, though, people were very friendly and since ours was the only new family there, many came up and welcomed us to the group and wanted to know more about Belalu.

We met a family whose daughter has acon who's only a month younger than Belalu, and we also met a boy who was about 6 months older than Belalu, so essentially the same age. I hope to keep in touch and meet up with them again in the future, since we live less than three hours away from each other. I also met two families whose daughters had hypo- one was 7 and one was 13, and a woman with hypo who said she had never met a baby so young with hypo, since her kids were both AH and usually hypo kids are diagnosed later.

I did notice that the presence of so many little people in one place drew the attention of the other guests. Several people had these amused smilies on their faces and gave each other knowing glances- one family was practically laughing out loud at the breakfast area one morning. I tried not to get too upset about it, but of course that image is still burned in my mind. That's how people are going to look at Belalu, and there's nothing I can do about it. At the parents' meeting, I had wanted to ask them about how they deal with comments and glances, but didn't get up the nerve to do it. I felt like for most of the people there, this was an old topic- they've already been where I am and have figured it out. Of course, I could have been wrong, and I'll never know now, but I just listened to others' concerns and questions at that meeting.

I wish J could have been there, too, but I'm glad I went. I had wondered how Essie would react, and for the most part, he didn't seem to notice anything different about anyone. The first morning, however, after having already met many people the night before, a woman with acon came up to the table to talk to us, and after she left he said very softly "She's little." I asked him "what did you say, Essie?" and he said it again "She's little." It was just a statement, with no surprise or wonder to it, so I just said "yes, she is," and we kept on eating. That's how I want it to be for him- to realize that just as people have different color hair, eyes, and skin, people have different shapes and heights, too, and to move on from there to get to know them for their personality. At the final dinner it was so cute to see a girl in a wheelchair playing tag with a group of kids- Essie was in the group, just chasing her around like he would any friend on the playground. So, this time around I got more out of the convention than the kids did, but I hope that we can make it a regular occurrence for our family. That way, they grow up knowing lots of people with dwarfism and not thinking of Belalu's condition as unusual.

I was also excited to finally meet the girl I had seen on campus. She was in the lobby when we got to the hotel, so this time I went right up to her and introduced myself, since I haven't had a chance to talk to her on campus yet. I was glad I did, because I didn't get a chance to talk to her again that weekend. All the teenagers hung out together and obviously didn't go to the parents' meeting. They came into the ballroom after the dinner, but just as we were heading out with Belalu in full "I-need-to-go-to-bed" meltdown. At least now I can address her by name if/when I see her on campus again.

1 comment:

  1. I was like you and I felt that I kept saying the wrong thing. I am sure you did fine, you are a very sensitive person, although I can say really stupid things when I try not to say them...
    It is lucky that you had that many people with HCH, we felt a bit excluded as 98% had ACH.