The world catches on

It is finally striking me how small Sam really is. Now that we're moving back into fall attire, and Sam is solidly a 24 month waist, I realize I'm rolling pants up three and four times. When they come unrolled and drag several inches below his feet, he'll sit down on the floor, crying out in frustration: "Mommy! Fix my pants!" If he has a choice, he opts out of pants altogether. I can't really blame him.

At least now he still has the 24 month option. I figured out with Maya that 2T is a longer, more slender fit, where the 18 and 24 month pants are more robust in the waist and shorter in the length.

I finally have embraced the fact that having a son with Metaphyseal Chondrodysplasia, Schmid type means I have to learn to sew. I will need a sewing machine, and soon. I don't want Sam to be picked on for having to roll his pants four times.

I'm not the only one who has noticed there is something different about Sam.

His gait is already earning him attention from the bigger boys at Maya's school. In fact, on a day that was already tough for me, two little boys looked at Sam and began mimicking his limping waddle, and when we began to leave, one meanly jeered, "Yeah, GO!" and waved his arm like he was throwing an imaginary ball toward the front door.

I stiffened, trying to refrain from going psychotic on these little 5-year-olds. Two nearby teachers were talking -- the classes were in transition and I know they were trying to work out the new system. So I said loudly, "Oh, that's not nice. You remember what it was like to be the little one."

Mrs. P, who turned out to be Maya's new, very sweet teacher, snapped to attention and said, "Who wasn't being nice?" The two boys snickered.

I just opened the door, lifted my head and walked out behind Sam, who had actually just seemed thrilled that the bigger boys were playing with him, in his mind.

It makes me insane to think of anyone teasing my kids, particularly for something out of their control. He didn't realize it that day, but the day will come that he does.

I think it was the same two boys that had also made fun of Maya's brother's "ugly face and head" one day last year. Mrs. L caught that one, and let me tell you, I wouldn't mess with her. She had those boys over at her side in an instant to reprimand them, and I loved her so much at that moment.

I feel like these kids are noticing what adults have too but can't quite place -- yet -- and that is that Sam has a form of dwarfism. Despite everyone saying Sam probably won't be different, I see that he already is.

According to the geneticist's note:

"Their (The endocrinologist's) note mentions the fact that he clearly had short stature, with a height of 76.4 cm, which had fallen from the 25th to less than the 5th percentile. In the meantime his head circumference of 49.5 cm was maintained at the 70th percentile, a relative macrocephaly. His weight 11.5 kg was holding at the 10th to the 20th percentile."

These small boys had picked up on the fact that Sam had a waddling gait due to the Coxa Vara, and that his head was not quite in proportion with his body. It astounds me that such young boys would be able to discern differences like that and hurl them out as a reasons to ostracize my sweet little boy.

Regardless of what anyone has said, he has a form of dwarfism and it is increasingly apparent. I know people mean well when they say people might not notice, or that it doesn't matter. Of course it doesn't matter, to me, I love Sam just as he is. He is awesome and resilient and hilarious. But the reactions from the rest of the world are beginning to drive home that we should raise Sam with this understanding so he can handle ignorance with grace and humor.

Now is a good time for me to put out there something I have heard and never understood. I have heard people say that they would not change their children, regardless of the situation, because that is what makes them who they are. I'm reading a book now called Expecting Adam, and author Martha Beck says she would not change a thing about her son with Down Syndrome. I didn't get it, but now I do. Sam is delicious -- he is precious and his strength is remarkable. If he falls and cries, you know it hurt, because 19 times out of 20, he pops right back up and blurts out "I OK!" before you even have a chance to ask. That's not to say that I don't knot up inside when he can't walk up average-sized stairs, or jump. I might take away the pain if I could, but I wouldn't change his stature. I would change how the world reacts to his stature.

Though I don't mind that he is different, other than how it affects him, I don't want to pretend that he is the same. I don't want to feign a reality that he can't relate to his own experience. I understand we're all different, and all the same, but some differences are more immediately apparent than others.

I also don't want to dwell on the differences, or let them define who he is. As I've written before, I just want him to be proud of who he is. I know this isn't easy while growing up, and people with far more marginal complaints beat themselves up over not being blonder/darker/prettier/skinnier/bigger/taller/cuter, or whatever, despite having physical health and capabilities that others would love to have.

I guess my biggest wish is that the world wasn't so scared of or voyueuristically fascinated with differences like dwarfism. With Metaphyseal Chondrodysplasia, the form is much slighter than other forms. That means Sam could end up being 5'6" or he could end up 4'6" on the shorter end. The geneticist had assured me that he would be short statured but in proportion -- though when I read her note, I realized, that's relative to others with different types of dwarfism. Clearly, he has different proportions than average-statured kids.

These boys have made me think about something I read on LPA's Web site in what I call the "Welcome to dwarfism" handbook.

It had mentioned that kids with dwarfism often benefit if their parents send materials in for classmates so they can understand it, and so they feel free to ask questions. That leads to knowledge and understanding and ideally, makes teasing less likely. I had thought maybe we wouldn't need to do that since Sam might end up of nearly average height... maybe we shouldn't draw unnecessary attention to him. But if people will notice anyway, maybe we should prepare everyone. And if he ends up on the smaller end of the spectrum, people will notice, he will notice. But on the other hand, I don't want to make him self-conscious about something in addition to his physical limitations if he doesn't need to be.

As usual, I go back and forth and I guess this falls under the all-encompassing heading of: Things to Figure Out As We Move Along Because There Are No Easy Answers.