31 months

Niko is 31 months old.

It just feels excessive to continue counting the months. But every month means volumes to me.

RIP little Angels

Two sweet I-Cell kids left us recently.

Wynnie, Dec 3rd
Wynnie had been struggling with his health for a while now.  He had a couple close calls last year.  His little body just couldn't fight anymore.  He was six years old.  His twin brother Dorian (also with I-Cell) misses him dearly. Wynnie's mom described his passing beautifully here.

Eryka, Nov 28th
Eryka was four years old.  She had the biggest brightest smile of all I kids I know.

Fly high sweet kids.  

Swinging

Our November sky is still warm and kind.  I think this might be our last week of stepping out into the sun without jackets.

Mila is such an amazing sister.  I love what they do for each other.

Catching up

I've been completely checked out recently.  I just didn't have any urge to post, or check into online social circle, or even play with electronic gadgets.  But ever since I got the new iphone 6 last week, I've been reminded that I'm of the digital era.  And geeking out of the beautiful iphone is so much fun.

In the last couple months I have not taken many photos or videos.  But here are a few.

Niko learning to scoot.


Niko running down the hall.


Niko babbling with papa.


And here are Mila and Niko from Halloween.
Mila was a Marionette puppet this year.  I made her costume completely out of paper.

And for Niko, I made her a hat out of the same painted paper in the Mila's costume.  

Poor thing, she hated the hat but she couldn't even reach up high enough to take it, off due to her stiff joints.  And I had to laugh at her.  

RIP Hannah

Hannah passed away at the end of August.  She was 10 years old.  She was spunky, chatty and full of love.  Fly high sweet girl.  

Makeover

It's been a while since I've posted.  And my last post was pretty much of a downer.

So here is a something more uplifting.  It's not about Niko, but rather my other baby, the other baby whom I also love dearly.  With my not-so-little-anymore Mila growing up so fast, a woman's got to hang onto her babies.  Luckily for me, Niko and Wolfie will forever be my babies.

Little Wolfie has received an ultimate makeover… er more like a facelift.

So this is what he looked like before…

He was a 1978 "Champagne" Limited Edition.

And this is Wolfie now!

Crazy change right?!

We spent many sleepless nights, laboring over the colour decision.  We went through just about every VW colour.  

These were our first choices in colours.  Kiril wanted Chrome Yellow and I wanted Seafoam Blue.   Both of our second choices was BMW Liquid Blue (not even a VW colour!) … and so sealed Wolfie's fate.

We're a little nuts to go with a metallic, but it really shows off the sexy curves.  

We took him camping right away, straight out of the body shop.

Niko slept in the top bunk, looking cozy as a warm baguette.  

I have inherited Niko's fascination with the rays of light.

And Mila has inherited my love for climbing trees.  

Pizza stop on our way home.  We had the best table!

So the next item on our list: Brand new beds and upholstery.  We have already ordered the foam and the fabric.  I will try my hand at upholstery work.  I will attempt to make covers for the bottom Z-bed and the top bunk.  I'm going to take a trip to one of my favourite places (the hardware store!), and buy me a staple gun to nail the suckers into the frame.  Wish me luck.    

Life Itself

Tonight I watched “Life Itself”, a movie about the Life, career, health, decline, and ultimately, death of Roger Ebert. 

It’s hard to say that I liked the movie because many parts of it were extremely difficult to watch.  Pulling the viewers in to closely witness the suctioning of his tracheotomy tube was entirely unnecessary.  It also gave me a terrifying glimpse into our potential alternate parallel.     

At the end of the movie, when Ebert’s wife described the moment of his death, with her at his bedside, I did everything I could to suppress my tears.  If watching alone, within the protective walls of my house, I would have weeped like a baby.  And even then, alone, I would have felt embarrassed by my sobs.  Why do I associate tears with fragility and shame?  Especially since I’ve made a career of it over the last couple years?  Self sabotage.     

Death is so abstract.  I believe I understand it intellectually.  I have witnessed and grieved the deaths of grandparents, aunts, uncles, and even peers.  Lately, I’ve seen death at its cruelest - death in children.  Each passing cuts deeply and I still feel the sting of the wounds.  However death remains unfathomable.  As the saying goes, “in this world nothing can be said to be certain, except death and taxes”.  Well most of us understand neither.  The IRS and the grim reaper share the same cloak of mystery.  Isn't it cruel that our only certainties are the most incomprehensible?

In the last moments of Ebert’s life, his wife turned on the music, held his hand, and finally felt at peace as the doctor announced the time of death.  Although completely self destructive, I couldn’t help but see myself in that position.  In truth, I’ve never envisioned myself in this scenario before.  I mean, really see myself at her deathbed.  Why the hell would I do that?  It’s morbid and damaging.  But while listening to her story, I went there.  What would I do at Niko’s bedside?  Would I hold her?  Or would she be bound by wires?  Would I keep her in my arms, unwilling to let anyone else hold her?  Would that be selfish?  Would I play music?  And what the fuck would I play?  Wheels on the fucking bus?  Would I allow Mila in the room?  These awful thoughts were invading my mind.  That is why I lost it.  That is why I quietly cried.  I felt selfish for making that moment of the movie about me.    

I should not watch depressing movies anymore.  But strangely this movie brought a little wave of calm to me.  It brought me one tiny step closer to understanding death.  I’m not sure if I really want to understand it.  Maybe I should just let it hit me.  Maybe I'm wrong…

Want to watch Niko bitch slap a horse?

Ok the title is a bit of an exaggeration.  But Niko did get very up close and personal with a miniature horse today, and she was not afraid.

This horse's name is Wendy.  We are told that when she makes a chewing motion with her mouth, she is in a calm and relaxed state.

 

RIP Gracie

Yesterday, a beautiful angel left us.  Her name was Gracie.  She lived in the London area, and she was almost 18 months old.

My heart breaks for this sweet and beautiful girl.  She just lit up my screen whenever I looked at her photos.  She had a great appetite for life and delicious food, including chocolate.  This little tiny girl…  left us too soon.

Rolling over… for real

Niko can finally roll over.  She did this five times yesterday.  It's not easy.  It's definitely a bit of a struggle.  She can roll onto her back from her stomach now.  The look on her face goes from super pissed to super proud.

In the middle of cheering and jumping up and down, I managed to get this on video.

 

My mom, the baby whisperer

My mother has her special ways with Niko.  For some reason, she is able to help Niko learn skills.  I have tried, in all the ways I know, to teach Niko some basic communication skills for two years.  I can't even get Niko to reach out to me when I extend my hands to her.

But my mother comes to visit twice a week and performs magic with her.  Niko learned to blow kisses from her.  She learned Peek-a-boo from my mom.  She learned to rock her body side to side to ask for singing from my mom.  She learned to shake hands as part of a song, exactly on cue, which my mother also taught her.  And now she has learned to clap her hands on demand.

Maybe Niko doesn't like English or Cantonese.  My mother speaks to her in Mandarin.  Since I am only fluent in Cantonese, here is a video of my asking Niko to clap, in my pathetic Mandarin.

Happy 2nd Birthday!

Today is Niko's 2nd birthday.

We had a small picnic for her at a park yesterday with about 10 people.  I forgot to take photos but I think that's a good sign.  I was too busy having fun.  She is definitely more alert and aware now.  She seemed to know that we were all there for her.  And when we sang Happy Birthday, she grinned from ear to ear.

She really does seem different to me.  She's made some noticeable changes lately.

Starting with the physical, her hair has become more brown.  Her eyes have turned brown instead of the slate gray-ish blue that they once were.
She now gets stranger anxiety and doesn't like when strangers (or even friends we've known for a while) get close to her face.  She used to absolutely LOVE interacting with people, strangers included.  I hope this is a phase.
She can join in clapping when there is applause around her.  This is so very cute.

And now for my favourite!  She can give kisses.  I just melt when she does this.



When I stopped to take a photo of her today to mark her 2nd birthday, a leaf fell on her head.  It was so perfect.

I love this girl!

I'm so attached to this girl, it's beyond normal.  Sometimes I want to lift her out of bed while she's sound asleep at night, just to hold her.  

I'm so crazy about her I can taste it in the back of my throat.  Many times, I squeeze her so tight hoping that her scent would envelop my body and hopefully linger on me for the rest of my life.  

She loves throwing her head back.  She's so trusting.  If I don't catch her…. yikes!

Chinese Headdress

It is too much fun to put Niko in various head pieces.  If I'm ever feeling blue and need a pick-me-up, Niko usually ends up rocking a hijab.  And here is a traditional Chinese Headdress.

My cherie Claire

Ummm… you want to know how obsessed Mila is about Claire?  She drew this picture of her yesterday and insisted that I mail this to Claire.  

Mila says she loves her "flowy hair".

RIP Charlie

I am so heart broken.  Charlie passed away on Friday.  He was three years old.  It hasn't even been a year since his sister left this world.  Charlie and his sister, Amber, both had I-Cell.  They were the only children of a very amazing couple.

I am so stunned.  Charlie never seemed to have any health issues.  He was doing so well and breaking grounds (like standing up and learning to really walk with a walker).

Over the last year, I've watched the fall of too many I-Cell kids.  It never gets any easier.  Each passing of these little angels slices a fresh cut in my heart.  And each time, I'm made aware that I will have to face this harsh reality in the near future.  I really hate I-Cell.  Life is so unfair.  Children should never have to suffer.

RIP sweet Charlie.

Little Charlie

Dear little Charlie is in critical condition.  He is the younger brother of Amber, who passed away last May.  I believe he is about three years old.  He developed pneumonia a couple days ago.  One of his lungs collapsed and he's been put on a ventilator.  As a result, his other lung, being overworked, became inflated and has sprung a leak.  He now has an air pocket outside his lung.  Unfortunately it is located in a spot where the doctors cannot reach, and therefore they cannot release some pressure.

He's the cutest little thing.  I don't pray, but I'm doing the atheist equivalent.  I hope with all my heart that this boy will pull out of this really soon.  It's all pretty surprising because he's been doing so well.  He was just recently learning to walk with a walker (a pretty astonishing feat for I-Cell kids).

Sending all my good energy to you dear boy.

Flower Crown

My sister got this flower crown for her birthday.

So I tried it on.

It started to itch.

So I'm not a fan.

I-Cell Coo Coo People.com

This weekend was incredibly special.  The Ross family drove down from Vancouver to visit us and the Watson family (Claire's family).  Amy (Gabby's mother) came one day earlier, and that day alone with her will be cherished forever.  

James (Gabby's oldest brother) delivered the best line.  He asked how we all met.  I told him that we met online.  And he asked, "Where?  I-Cell Coo Coo People.com or something?"  Yup, that is exactly where we met.

I only wish that this had happened one year earlier so that I could have had the chance to hold Gabby for hours.  

All the kiddos on our couch plus Gabby

It was a major love fest.

Mila was obsessed with Claire.  She cried for a long time after she left.

Claire was teaching Niko some moves on the mat.

February Days

While we are holding our breath here in San Francisco for rain, the days have been neither sunny nor foggy.  They are simply hazy because we have not had any good rain or fog to scrub the city down.  

But I have my two rays of sunshine.  

Mila has learned to groom Niko's hair.

Mila holds up music notes for Niko while she pounds on the piano.

Mila is also Niko's personal stylist.  The hat was her idea.

One small step for Niko; one giant leap for her kind

Niko has joined the world of the mobile.  She's been improving in her Rifton gait walker.  This walker is a demo that is on loan to us.  In two days, the paperwork will go through for Niko to have one of her very own.  We have ordered this red colour because Kiril thinks of it as her Ferrari.

So far, she has not figured out how to move straight forward, she kinda swirls to get where she wants.


Or she zigzags.  And she always wants to follow her sister.


I can clearly see on her face that she is proud to be moving on her own.  I'm so thrilled about each step she takes.

21 months

Niko is now 21 months old.  She has the weight of an average 7-month old and height of an average 6-month old, being at 17lbs 5oz and 26in long.  She has given me 21 months of pure sweetness.