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

New Baby

A new baby was born into this world today — my husband's cousin's baby boy.  In honor of new births… the new baby boy whom I can't wait to squeeze, the royal George Alexander Louis, the darling buds of July… I would like to announce my new baby.

He's 35 years old, but he's the newest member of our family.  I don't have a name for him yet but I think he's a boy.  I've got to check his underside to be sure.

I've been obsessed with the VW Camper Van (or Kombi) for as long as I can remember.  I think this is THE MOST PERFECT CREATION in all history.  Anyone who knows me knows that nothing moves me like the Kombi.  If I were the type to get tattoos I would have sleeves of Kombis covering my arms.  For our wedding gift, one of my friends did a painting of a blue 67 Kombi with front split windows like this below (my favourite!).  For Christmas last year, I got the VW Camper Bus lego set.

What is more beautiful than this?  Nothing!

Nothing comes close to its beauty, design, concept, functionality, and certainly not its ability to invoke happiness.  These are happiness machines created to bring bliss into people's lives.  Only a design from divine hands can exhibit unrivaled beauty with a modest profile.

We are going to pimp out this baby.  All the dents will be smoothed out.  The rust will be sanded off.  A new coat of soft seafoam blue will replace the brown.  I will make window curtains in the finest linen.  Mila's college fund will now be spent to outfit this baby with new cushions and foam mattresses, pop up tent canvas, all new wood panels for the frame, new seals for all the windows and doors, brand new kitchen and appliances.  Nothing will be too good or too fine for this baby.

With the top popped up, this camper can comfortably sleep 4 adults.  We will purchase a new baby cot so that Niko can sleep above the front seats.  I'm practically foaming at the mouth thinking about all the dinnerware and cutlery that I will carefully arrange, measure with a ruler, straighten, and place in the drawers.  Then I will take them out so that I can enjoy the process of placing them in again.  I'm imagining all the lovely meals we will have under stars.  Espresso machine, toaster, solar panels, iphone dock, shower and toilet?  Only the best for my baby.    

The first meal in our Kombi, albeit in Fred's garage

  
With so much jaw dropping beauty and excitement, who has time to worry about the practical?  I know that these cars require a lot of work.  There are always little issues that pop up from time to time.  Currently the engine has been ripped out of the car and is sitting on the ground in the middle of our mechanic's lot.  An insignificant detail is that this car, in its current state, is illegal to drive in California.  We must swap in a fuel injection engine.  The other minor detail is that our mechanics from Fred's Garage are not optimistic about achieving this task.  But that's nothing a batch of cookies won't fix.  So a batch of cookies is exactly what I baked for them this morning.  The cookies, along with some sandwiches from my husband, will surely push this project along.  This might become a slight financial burden.  A second or third job will likely be imminent, perhaps another mortgage on this house.  I can sell my hair.  I'm committed to go the distance.

I'm nearly certain that this car will hear the sound of a roaring engine by the end of this year, perhaps even its own engine.  And I'm almost willing to bet that Mila, when done with college, without the help of our funds, will enjoy a meal in our dear Kombi, under the stars… maybe even a few hundred feet away from Fred's Garage (with a couple pushes from a few strong men).  

14 months

Here are a bunch of photos to mark Niko's 14 month mark.

I love when Niko looks all disheveled.

This is chan pie gnon, Niko's new favourite toy.

And a few videos

Niko was able to put herself to sleep in a loud cafe that hijacked Quentin Tarantino's playlist.  

Trying out a friend's bouncy.

While at Georg Mark's Children Place last weekend we met a visiting horse as part of their animal therapy… guess who slept through the whole thing.  

Can she move her arms?

I live in an energetic and densely populated neighborhood that has a paradoxical small-town culture.  North Beach is a perennial favourite with tourists and packs in the highest concentration of bars and restaurants in the city.  However locals make up an integral part of the fabric of North Beach.  You can never get lost in the crowd here.  Everyone knows your name.  It's hard to walk to the corner store without stopping to chat with a few friendly faces, and harder yet to escape from an invitation to lunch or coffee.  Neighbors and local merchants swoon over your kids and give them sweets when they think you're not looking.  They tell you if you've left your lights on.  They share the latest gossip.  They know your business.    

I was chatting with a man from my neighborhood while waiting for coffee yesterday.  He's my morning-small-talk-guy.  And he suddenly asked me, "Can she move her arms?", referring to Niko who was strapped to my chest in a Bjorn.  "Yes, but she has limited mobility, and will most likely not improve over the years."  Wow, I was impress that I got that out so casually without losing my shit.

It was when I got home that I fully appreciated his thoughtful phrasing of the question.  "Can she move her arms?"  It allowed me to answer his specific question with exact details, and without getting embarrassingly emotional.  "Yes she can move her arms"  Or "She's got stiff joints but we are working on increasing her range by stretches."  That's easy to say.  And it relieves me of making that hard decision of how much, to whom and when should I share.  What he meant is, "What's up with your child?"  Of course I can see that.  But if he had asked that, I would have either burst out crying, or suddenly realized that I was very late to a pressing schedule and didn't have the time to chat after all.

I love specifics.  Specifics I can talk about.  It's the whole package that I have trouble articulating.

And Niko can move way more than just her arms.  Here is a video of her in OT.
I have always noticed her leg strength.  I just didn't know how to help her use it.  So I asked her OT if she had a platform with wheels so that Niko can try scooting on her back.  What she had was too high for Niko.  Her short little legs couldn't touch the floor.  So her OT allowed Niko to push against her hands.  This really blew my mind.  Niko shot across the room in no time (and on her first go).

 

And here she is pushing herself to bear a little bit of weight on her legs.  It's so cute.

And a bonus video of Niko laughing.