27 August 2009

Day Out

Today, for the first time, I dared to take time out, leaving Vera solely to my new helper and my old grandma.

What did I do? What the typical Singaporean woman does - head for some retail therapy at Orchard Road.

It seemed like such a luxury just to be in town - to not be working on a weekday, and to have someone trained to do the works - feeding, bathing, rocking Vera to sleep.

I saw many "tai tais" - well-heeled, well-dressed, well-made up middle-aged women of leisure at a Bobbi Brown make-up workshop. I thought to myself, they must be so free. It seemed like looking good was probably what occupied them on a daily basis.

Unlike them, I was dowdily dressed in yoga pants and broad brown sandals, my hair flat and bodiless...hardly the do for strutting down the famed shopping street. I had "Stay-Home Mom" written all over me!

Years ago, I would have been aghast at my own sloppiness. But motherhood changes your self-image. When there's so much else on your plate, what people think of the way you dress just falls to the bottom of the pile.

Nonetheless, anyone out there keen to sponsor a make-over for this frumpy mom?

26 August 2009

Poo Poo Position No.1

Babies with low muscle tone sometimes have difficulty moving their bowels. For Vera, what helps is lots of I-L-U tummy massaging and some water between feeds. We've also found that the position above helps to coax the precious gold out. So far, she's poo-ed twice standing like this. And I get a direct whiff of the aroma!

23 August 2009

Give Her a Handicapped Child

This poem describes me to a T. It made me feel like I have been chosen to have Vera.

T
HESE MOMS SHARE SPECIAL GIFTS

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious, "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But, Lord, I don't think that she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says Momma for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles, "A mirror will suffice."

Reality Hits Home

Vera turned 1 and a half years yesterday. But I am filled with sadness today.

Because little Brianna was doing so well, and now she's suddenly having blue spells and going in and out of hospital.

The reality hits home for me - that for Trisomy 18 babies or children, no matter how 'well' they might seem, there is just no guarantee. (Come to think of it, nothing in life does right?)

And as a Trisomy 18 mom, I live with a 'disclaimer' every day. That no matter how happy and thankful I am with Vera's current state, I know I need to be prepared to give it all up someday, perhaps even suddenly. Perhaps it is my defence mechanism - the need to preserve my sanity. That's why ever so often, especially in wee hours of the night, I play over Vera deterioriating in my head, and play over myself letting go. I know this may sound like really negative thinking, but it's just my way of coping with the uncertainty of the future.

I was just happily singing this song to Vera the other day, and burst out in tears without warning.

"You are my friend,
Though we're miles apart
I am still with you
For always you will be in my heart.

You are my friend,
And I call your name,
Though it's not the same,
Forever you will stay in my heart.

Wherever you go, I want you to know
There will always be, a you and me cos
You are my friend, till the end."

Of course I experience the immense joy of Vera, but sadness is always looming somewhere in the back. It's just a reality Trisomy 18 parents have to live with.

Joy, sadness. So opposite yet so much the same thing.

19 August 2009

Food Tasting

video

It's high time to start Vera on semi-solids, so mommy got started again, with some liquidy rice cereal. The little girl realises it's not water, spits it out, and takes it in again. Then lets her finger do a little bit of taste testing.

She took about 5 spoonfuls. Incentive for me to keep up the therapy!

Update

Just to say that nothing much's been happening around here with Vera, hence the lack of posts. She's her usual smiley self most of the time, not really improving much physio wise, not really improved much feeding wise, not really putting on any weight either despite increasing her feed amount. Mommy's been very tired recently and hence have slackened on her physio and feed therapy. Luckily, we've got a new Philipino helper called Beth who now helps mommy with all the household chores and cooking, so there's welcomed relief there. At 28, she's young and energetic, unlike me! It's amazing how your energy levels drop once you get into your thirties. Meanwhile, we're happy to be at home, safe from the threat of H1N1 that's now reached a peak in Singapore.

10 August 2009

Forever Young

Vera has an immense effect on my 88-year-old grandma.

Somehow, she makes her younger. When granny cajoles her, she sounds like a little girl with a high-pitched voice. She gets down on all fours to play with Vera on her mat. She smiles a lot too.

I sometimes wonder who will outlive the other. It's just a fleeting thought. Both of them, so precious to me, to be treasured more, for time is not on their side.

Walk in the Park 8



With the H1N1 flu going around, the safest place to bring Vera is the beach. Here we are at Pasir Ris beach, just a 7 minute drive from our home. Yet another quiet, peaceful outing with Vera.

07 August 2009

The Haze is Back

The dreaded haze is back to haunt us.

Every year at about this time, smoke from primitive slash-and-burn activities in Sumatra, Indonesia blows over to Singapore, and it's hell on our respiratory systems. I'm exaggerating, but hey, we're losing the basic need for fresh air and breathing normally! My nose is stuffed up, it's hotter than usual, and we put up with the smell of a burning fire the whole day.

Vera's not taken well to it either, as I had expected.

She was up from 2-5am, struggling to breathe through her blockage. Daddy had the unenviable task of carrying her in the wee hours. Being more upright helps.

Arrgh! Some things (well, actually most things) are just beyond your control.