Greeting the world

It's amazing how different it feels to hear certain things knowing other things.

For example, when the woman sitting next to me on the airplane to St. Louis told me she believed Sam would be tall, I probably felt differently than I would have before I knew Sam has a form of skeletal dysplasia that will likely keep him between 4'6" and 5'6".

Before learning that, I probably would have laughed. Nobody in my family is very tall, really, and Sam's height percentile has steadily dropped since he was born. Not really surprising to my 5' 7" husband Jim and me; we had just assumed we would have smaller kids.

But as this lady looked over at the row of three -- Maya, Jim and Sam -- she asked me Jim's height, and sagely informed me:

"Your son will be taller than him. I can tell. Look at his hands -- they're big for his size."

I was reminded of the puppy paw theory and didn't realize it applied to humans.

I smiled at her. She was a very nice lady. I didn't say anything.

"You can always tell when you look at a toddler's hands how tall he will be," she continued.


I didn't tell her that with metaphyseal chondrodysplasia, Schmid type, (and finally a pronouncer, now that I've got it: muh-taff'- uh-SEE'-ul con'-dro-dis-PLAY'-zsa) Sam's hands would probably look larger in proportion to his arms (and legs), because his limbs are disproportionately smaller than the rest of him. Not much, but a bit. That is the case with most types of dysplasia, or at least, that's my understanding.

I am used to people commenting on his waddling gait, which is increasingly pronounced the older he gets. Not because it worsens, but because it is more obvious as he grows that it is more than just a toddler gait, and more glaringly asymmetrical. It earned him the nickname "The Mayor" from Jim early on, and that name caught on. It wasn't just his swagger, it was also his genial nature and outgoingness. I would always nod and agree enthusiastically when people would giggle and fawn over him. I still do typically.

But some days, it feels different than it did prior March 16 when we first saw the pediatric orthopedist and found out he had coxa vara. Now some days I don't grin quite as widely when they talk about his waddle, though I still agree, it is ridiculously cute. But I feel sad too because I know it will cause him pain after his major operation on both sides and six weeks in a body cast, and I know he has to work harder than other kids to move. Certain things, he just can't do, and I watch him struggle and offer gentle help.

I try my hardest not to ever let him feel my sorrow; I think that would feel terrible as a child, and he is so happy and bright. He doesn't know anything different, and he's tough. I don't let it out, except occasionally after the kids are in bed. I've heard different theories about this, from people who say not to ever get down because kids feel that, to people who say you have to mourn exactly when and how you need. I think I'm somewhere in between, but fortunate to feel positive most of the time.

The rest of the family rarely calls him the Mayor anymore, probably because they feel the same sense of sorrow that he has to struggle at times.

I am also accustomed to people gasping or trying to feign non-surprise when I tell them that Sam is nearly 2 and a half. Or they will stare open-mouthed when he starts talking. He is eloquent for his age, and he certainly is eloquent for the age people assume he is. I am guessing that's around 20 months or so, considering his gait and his size. Before I knew about his genetic condition, I just figured it was his hips combined with genes... though, looking at pictures of Maya, I realized she definitely had more of a kid stature, less toddler stature, by this age.

But the airplane lady was the first to openly comment on his height specifically. Oddly, she was there to inform me he would be tall, not to mention that he is small.

Reflecting on this later, I remembered back to one of my cousin's softball game. I was probably about 11 years-old, visiting the same family in St. Louis we were traveling to see that day, and a little girl started talking to me in the stands. She was really cute and funny, and I asked her how old she was. She said she was eight. I remember being stunned because she was so clearly short for her age, that I just started talking before I could stop myself.

"You're really tall for your age," I blurted out.

The second I said it, I thought, "WHY WHY WHY WHY? You couldn't just keep quiet?!" I don't know why I chose those words. She was obviously small, but knowing it would be rude to say "You're really SMALL for your age," instead I said "tall." It's like I couldn't stop it from coming out....

And to my humiliation, the little girl shouts incredulously up the bleachers: "Mom! HEY MOM! This girl thinks I'm TALL for my age!!!"

I turned about 100 shades of purple, I'm sure. I stammered something about how second grade was so long ago that I couldn't remember how tall people were....

It wasn't a big deal. We hung out the rest of the game. Because we only visited occasionally from whatever base my dad was stationed, I never saw her again. I had forgotten about her until right then.

I think sometimes we are surprised by things we see, such as a person who is much smaller than we expect, but the urge to comment to the contrary is very interesting to me.

The airplane lady did not comment about Sam's current size, but on her idea of his future size.

I commented that the little girl was tall though she obviously was not.

In both statements, there was the idea that height was ideal, lack of it was a shortcoming. (That's not meant to be a pun, it's an example of how even our language is wired demonstratively where height is concerned. I'm sure I'll write an entire blog around the language of tall and short one of these days.)

It is interesting to me also that people feel at liberty to comment on stature. As as my new friend Pen put it, would they comment if our children were overweight or in a wheelchair? Maybe. I don't know. But in the cases I mentioned, the comments were contrary to the truth. I think that is really based on the fact that height is valued in our culture, no matter what we say or think.

I remember when Maya had increased in growth I had reported back to the family with pride. She had always been around the 5th percentile, and shot up to the 25th. I never minded that she was small, but for some reason I felt accomplished that she had caught up, so to speak.

I remember when she was a baby, so many people would always beam when they told me their baby was in the 90th percentile for height. (It seems like too many are in the 90th... if it's that common how is it the 90th? Or maybe we just know people with really huge babies?) I never cared that she was petite, I loved it. She reminded me of a little pixie.

Sam was a big baby, and tougher to hoist. He was born pretty big, and he stayed pretty big until about five or six months, when he leveled out. This did not come as a surprise to us at all; we were surprised he stayed so big for so long. But I remember hearing myself tell people where he was on the growth charts (down to 25th, or down to 10th) and people would reassure me, "That's OK. You knew he probably wouldn't be a big kid," as if I had said it with sorrow. And I really had not. While I did report with pride that Maya had gotten bigger, I never felt remorse or shame at having a smaller child. But still, I felt sometimes people would console me.

Some of this is evolution-based... just 100 years ago size did play a much more important role in our ability to survive, particularly for men. Today there are studies that show that shorter people typically don't make as much as taller people. These are all the studies we've been reading about white men versus any other ethnic group or gender for years.

The thing is, people have expectations and preset notions of what is ideal, particularly where physical attributes are concerned. Whether fair or not, whether we ignore them or not, label our children or not, they are going to infiltrate our lives. I want to handle every comment with grace and unflappable ease. Rarely are such comments mean-spirited, but even those should be met with calm -- they are made by people who don't understand and fear the unknown.

This is crucial to helping Maya and Sam realize that it's OK to be different. This is one of the main points made in the LPA (Little People of America's) sort of introductory, welcome-to-our-World handbook.

Some days maybe I'll feel like explaining a little bit. I have already given a sort of modified version: "Yes, Sam has a type of dysplasia that causes his bones to grow differently and create that really cute waddle, though it will require surgery to correct." I have had people debate me over the need for him to have surgery, and I mean fairly random people who have little or no experience or knowledge about any of this. It gets exhausting.

Some days, I won't be in the mood. I'll be tired, I'll be stressed, I'll be cranky or overwhelmed or overextended like most moms, whether they face these or other challenges. But I'm going to do my best to react like I did to airplane lady....

Just smile and say nothing.