Working Hard

Niko has been working hard lately on a unibrow and a beer belly.

A couple weeks ago, I had a dream of Niko speaking to me in three different languages; English, Chinese and German.  The image of her was so vivid.  She was standing, quite impressed with herself, machine-gun-yakking, wearing a pink and white striped dress with a ruched bodice, and straps of a quasi-Moroccan pattern.  I was determined to make this dress for her.    

Here is a video of her in said dress, drumming away with her speech therapist.  

August in Santa Fe

We just came back from a summer trip in Santa Fe .  We were there during Indian Market.  Downtown Santa Fe gets packed during these few days.  About 150,000 visitors come for their chance to get spiritual by paying through the nose for some unique Southwestern turquoise jewelry or Native Indian art.  The weather was subtly warm but not suffocating. 

I bought of pair of these moccasin booties for Niko.  I'll have to get a photo of her wearing these.  

I don't consider myself a local by any means, but I've been to Santa Fe enough to escape the title of "tourist".  And I believe I have a slim, but acceptable, understanding of the locals' culture simply by inhaling the New Mexican air and consuming the New Mexican cuisine in large quantities.  I enjoy learning about the history and architecture as well.

By and large, the thick mass of tourists doesn't bother me.  A tourist is one who visits a new place — and that's a wonderful place to be.  

However there is one thing that chaps my hide.  Steam comes out of my ears when I hear people say, "Oh don't the Indians have such interesting features?" "Look at them, they have great faces."  "And they can dance too."  "Really, they are just so very nice."  They are human beings, not animals on display, inviting onlookers to observe their remarkable features.  If I made a similar statement about caucasians, blacks, latinos, or any other race, it would come across as condescending, laced with superiority.    

Picture Taker                                                                Picture Takee 

Gawkers                                                                Gawkees 

Snapper                                                                Snappee 

Pisser                                                                Pissee?  

I have to admit that I am guilty of a greater sin as I looked through the lens of my camera.

While in Santa Fe, we got a chance to watch an opera, La Traviata, at the amazing open air opera house.

As classy and elegant as the opera house is, this lovely feminine napkins supply box greeted me in the women's bathroom.  That was as fun as these love-making crickets who greeted us on our hike the next day. 

The love-making trail led us to venture off into an off-trail patch where we found this love-shack tepee.  

I love walking in Santa Fe!

I love August

More photos for August

 

Sexy Legs

Niko's got the most remarkable hair.  It's also the most remarkably fine and fluffy.  When I carry her in the Bjorn, each time I breathe in I get a nose full of hair.  The weightless fine strands just shoot straight up my nostrils.  And if I dare speak or laugh, I get a mouthful of her soft hair.  So now I clip her hair down.   

Interestingly I read a description of kids of Mucolipidosis II as characterized by "coarse features and brushed-out appearance of hair".  It's funny that the hair is mentioned but not the other presumably less important details like the fact that they look like one year olds for their whole lives, or their motor functions.

Sisters having fun at a recent VW Camper fest

Yes I am obsessed.

Happy 15th Month Birthday!

Niko is 15 months old today.

She is my happy little girl.  Despite her blasted cold that has caused atrocious congestion for over four months (how does so much snot come out of such a tiny body?!), she is in a near constant state of serenity.  Her modest undemanding nature touches me, touches every fiber of my body.  She never cries, never asks for anything.  She is deeply satisfied when given a simple smile.  When she does have a request, it is done with the most quiet unobtrusive manner.  "Um excuse me.  If you don't mind, may I trouble you for just a quick diaper change?  I really don't mean to interrupt your conversation.  But I'm ashamed to say that I have soiled myself in the most inconvenient of times.  I would gladly sit here in my own blunder if it were not for the astringent burning of my bottom.  I am most sorry."  

In our most recent appointment with our geneticist, he mentioned how lucky we were that Niko has such a contented disposition because I-Cell children are prone to irritability.  What the…?  Really?  I found that rather surprising since Niko is always so cheerful.  And most of the kids I see in the Facebook group seem bright and happy. Whatever the case is, I'm very thankful for my sweet joyful Niko.

Skin and sun make a happy Niko.

A couple videos of what Niko has been up to.

Speech therapist teaching Niko to vocalize her requests

Scooting in physical therapy