31 January 2011

Expecting Adam

I have just raced through the book 'Expecting Adam' by Martha Beck in one sitting.

Uncharacteristically putting aside 'Therapy Time With Vera' and Daen's cries to finish it.

As I have found with most books that truly grab me by the collar, no one introduced me to it.

It was stumbled upon.

I was on a usual library round gathering boardbooks for Daen.

But one day, for no reason at all, I thought, 'hmmm, maybe I should read a book about motherhood, read a book for Me'.

One of them was called 'I Love Being A Mom'.

After a quick read through the collection of mothers' anecdotes, one essay stood out: It was by a mother recounting the experience of expecting a Down Syndrome baby. The twist was that both she and her husband were Harvard graduates. Read: Highly intellectually driven people being told their son would be 'retarded' (the word she uses).

Often times I've scouted for books on special needs parenting, hoping to find something to identify with, to gain some sort of catharsis for the journey I had gone through with Vera's birth, but the search never turned up anything close.

And now, after almost 3 years, I find a book that speaks about a time which I still have yet to fully talk about - when I was expecting Vera.

I opened the book, but in fact, it has opened me.

From it has sprung a reservoir of new thoughts and realisations about having Vera in my life.

Suddenly, the 'loose ends' - the part of Vera's story that has so far been in cold storage, all dash and cram themselves into the short term memory box of my brain.

I found myself with a tightness in the chest right from the start of the book. Midway through, it felt increasingly like I couldn't breathe. Reliving the emotions of the prenatal period was getting too much to bear. Then, once I got to the part when the diagnosis was revealed to the parents, the catharsis began. I shall not spoil the story for anyone, only to say that there was a line in the book that hit me with a boxing glove and a tequila shot of tears.

I've been anticipating, 'Expecting Adam' for a long time coming.

28 January 2011

Happy Feet

You know the penguin movie 'Happy Feet'? Looks like Vera's got them. She's been moving her legs more in the last 2 months, entertaining herself with them.

Yet another positive outcome of the adenoid and tonsil removal surgery!

25 January 2011

No More A Baby

10 months now

All too soon, Daen's a baby no more.

I had been anxious to get him used to taking his bottle and falling asleep by himself. And now that he can, I miss feeding him to sleep in my arms.

Last night I tried to do so and he refused, preferring the comfort of his bed now. The irony!

One day he's 5 months, the next he's 10.

With Vera, not much changes day to day, and you can enjoy her at the stage she's in tomorrow and the day after.

With Daen, blink and you'll miss it.

His Name is Today
“Many of the things we need can wait.
The child cannot.
Right now is the time his bones are being formed,
his blood is being made, and his senses are being developed.
To him we cannot answer 'Tomorrow.'
His name is 'Today.'"
- Gabriela Mistral, Chilean Poet (1889-1957)

23 January 2011

How We See Vera

One time, Ian and I caught Vera in the mirror and were surprised by how disproportional her eyes looked.

Her reflection

"Why does her right eye look so small?"

Well, because they are. Mirrors don't lie.

"That's probably how others see her," Ian said. With one significantly smaller cross-eye.

Amazingly, our parent-tinted lenses have compensated for the difference in our brain: we've been rewired to see less of the disparity.

Love, has certainly blinded us to the appearance of her many other physical shortcomings.

Do I see "Abnormal" in her low-set ears? No. Her lop-sided mouth? Her extra digit? Her rocker-bottom feet? Nope.

To me, these are what make Vera VERA. This combination makes her unlike any other toddler in the world.

I remember back in the early days when I would shoot poisonous 'what are you lookin' at' arrows at people who glanced at her in the park. Now, I'm too busy getting her gaiters on to bother.

There is a powerful sense of release and freedom when you accept, fully accept the special child you've been given.

Your eyes open and see beauty.

Little Porky, eyes a-gleaming

15 January 2011

Bye Bye Stander

"stepping out in style"

"going down, down, down..."

"for some fresh air and greenery"

School's in and the loaned stander has to be returned soon. What a pity, as Vera really enjoyed being on it. From 5 minutes when we first started, she can now take it for 10 minutes. She taps on the metal frame (above) and touches the wheel by herself.

Knowing that it'll be gone soon has got me into "last-minute homework" mode. But it's homework more enjoyable than any I've done as a student!

14 January 2011

Vera Loves Signing

Vera is very visual-led.

Although she can hear, nothing's stopping us from using the tool of the hearing-impaired to communicate with her.

And we've found that it turns her on.

Here, my uncle signs to her and she's so tickled. She loves looking at our moving hands. I've had similar response when signing nursery rhymes to her.

I've done up this manual as well of simple daily signs - sleep/bathe/sit etc.

Perhaps one day she'll get what we're trying to say.

09 January 2011

Vera Watches Daen

Does Daen know who is 'chea chea' (elder sis in chinese) ? Yes.

Is Vera aware of Daen's presence? Yes.

Do they know how to play together? Not yet.

Does he know how to 'sayang chea chea'? Not yet.

Does he like to climb onto her? Most definitely!

07 January 2011

Mouth Closed...Finally!

The beautiful result of Vera's adenoid and tonsil removal is that she can now close her mouth.

In the past, Vera had her mouth open all the time - she was a mouth breather since birth.

These days, she keeps pursing her lips and constantly blows bubbles in and out. Finally, she can play with her saliva!

It's a sign that her nostrils are clear and she is breathing easy.

The "sound" of her silent breathing is absolutely music to my ears.

03 January 2011

A Better View

This picture may seem like nothing out of the ordinary, but for me, it has particular significance.

Here, Vera in the upright position of her stroller.

Normals kids take this position from about 6 months. But for Vera, she did not tolerate this position for the longest time. She would arch in protest, or bend like bamboo in it. We always had her one notch down, semi-reclined. Her view would be nothing but high rise and sky.

It was always a rush - through grocery shopping, eating, etc, "before Vera gets uncomfortable" in the pram. She had no interest in the surroundings, and outings weren't much fun for us either.

Now, I guess her increased strength and tone has enabled her to take this position for the length of a walk in the park. It has made the exercise literally a stroll. She can now see people, pets, bicycles, cars, children running around.

It is so wonderful, just to watch her watch the world go by.

01 January 2011

Happy New Year 2011

There was a mini New Year Countdown celebration just a stone's throw (less than 100m!) from our apartment. Since the little girl was still wide awake (as always), I brought her down just to catch the fireworks. I hope she enjoyed it, the same way she likes sensory time in school.

This is her second time seeing fireworks. Her 1st time was during the end of 2008.

It was at the edge of the neighboring town, but still good enough to view after a short stroll. May was asleep and I was covering the night shift. Vera was having a string of late nights back then. Instead of continuing to try to rock her to sleep, I decided that it was something she shouldn't miss. No doubt, she seemed more excited at that time.

In case u are wondering, May and Daen were both knocked out by 9pm after his last feed. Too bad. Maybe we'll try harder to wake them up... next year. :-P