Favourite Pasttime

Finally, finger sucking has begun. From being able to aiming her thumb into her mouth, Vera has progressed to sucking on her fingers whenever she's lying on her side. It's a good sign: it shows that she's exploring her own hands, and able to pacify herself with them.

However, the downside is that the movement shifts the feeding tube, it irritates her throat, and causes her to vomit her milk out. It's painful for me to watch - the little girl is just doing what babies do, and has to put up with the consequences.

Boy, do I hate this feeding tube.

Hold Your Head Up Part II

It's clear she still doesn't like it. We were taught to put a rolled towel underneath, and push her elbows in to help her practice pushing herself up. Clearly, her hands don't have the muscle tone for this yet. She can raise her head once or twice, and then tires. But it's a start. Hopefully, with time, and practice, this gets easier for her.

Vera Has Torticollis

According to the Physical Therapist (PT), Vera has Congenital Muscular Torticollis. This refers to a tightness in one side of her neck muscles. It causes her head to tilt to one side. It's something that can be corrected with lots of daily stretching of the neck muscles, on the tight side. This condition will take up to a year to resolve. If no therapy is done, surgery may be needed to release the pressure on the muscles.

Vera's thigh muscles are also very tight. We were given a set of stretching exercises for her.

She enjoyed the music therapy. It's funny how she looks like she's learning to play the piano!

The Way I See It

Never thought I'd say this, but yes. We're in a good place now with Vera. She's responding more to us than ever. Not anywhere near normal babies, but she's showing us new abilities, here and there, like sucking her hands, sucking on my finger, responding at times with big smiles.

Everything she does I see as a bonus. Because they really are. And it's a great feeling you know? Not expecting anything from your child. Other people stress over whether their kids do well in pre-school, college, university, in their career, in their love life...all through their lifetime. We're not on that yellow brick road.

For me, it's entirely different. It's 'Hey Vera. Let's see what you can do. What you can't is ok, it's already much more than we hope for.'

For others, if their child passes on prematurely, it is a life cut short. For Vera, she's already outlived her expectancy. When I realised this reality, it really put things into perspective. It gives me a great feeling of release, a freeing of the heart and mind from fear of the future.

What about Quality of Life? Some ask. She'll have so many medical problems. Well, don't we all come to that stage at some point in our lives? When we're old, tired, weary and unwell. It's the same life process isn't it? Delayed for us so we don't have to deal with it just yet; Accelerated for babies like Vera.

One mother once told me, 'This journey is an intense one'. It sure is. Because you can ever feel, joy, pain, peace, frustration...all come together in every moment.

I hope I survive the ride.

The Haze is Clearing

More about Vera's eyes. Over the last weekend, it seems that the hazy film over her left better eye has cleared much more than before. We'd stopped monitoring (and got lazy with putting the eye drops) because we don't really see any change day to day. Then suddenly one day, I noticed that her left eye looked darker. It also coincided with her starting to follow our faces. And strangely, over the last few days, she's been a lot calmer for longer. It's really a miracle.

For all those who are rooting for this little girl, thank you so much for your thoughts and prayers. One thing is clear: Vera wants to be here!

She Follows

A repeat of the photo of the month...because finally, Vera can follow our faces with her eyes!

This is a milestone for her. At last, we know she can at least focus. Although we don't yet know what is the quality of her vision. The little girl must be seeing better than before though, because she keeps awake a lot more now, as if there's more to see. She loves the 'light show' when we're out for a drive at night as well.

Look here Vera! It's Mama and Papa!

Walk in the Park II

Today we brought Vera to West Coast Park in the evening. It was a first for us as well. We spend too much time in the house, so it was nice to just get out in the open.

The little girl however doesn't seem to like being awake in the day. It's possible her hazy corneas scatter the light and therefore makes overly bright environments uncomfortable for her eyes. So might as well sleep. Next time, I'll post a pix of how big her eyes open at night!

High Brow

I don't know who Vera got them from - her flaming, pointy eyebrows. See the way they sharpen upwards? In Asia, this brow shape is commonly associated with fierce people. Let's just say they're her 'fighter brows'.

It Takes a Man

When you see someone every day, it's easy to take the person for granted. But at the end of the day, I always remind myself how lucky I am to have Ian caring for Vera in these early months.

You should see him...how he cajoles her no matter how exhausted he is; how he carries her, no matter how his back is aching; how he stays with her, no matter many hours she's been crying. How he handles the difficult feeds singlehandedly without letting frustration get to him. It's Patience with a capital P.

In contrast, I pass Vera on when my back is aching, when I get tired, when she's cried way too much. So much for the woman being the best for the job, right?

All I can say is that I'm really really fortunate. I've got the right man.

Hold Your Head Up

"They put me on my tummy again!"

Vera used to love laying in the prone position. Not anymore. This is how she protests: by doing the head raising thing. Up 1 second. Down to rest. Up again. Down to rest. It's tough for her, but this is how high she's been able to raise it to.

Mummy hopes that one day she'll be able to hold her head up.

Back with Tinny

After a long hiatus, I caught Vera smiling at Tinny in her sleep again! Must be on the rebound...

A Magic Moment

I’m sure every mom has one: A moment in which they feel truly connected to their baby.

For me, this is when Vera finally calms down after a bout of wailing. After I’ve bounced her enough on my pocket-spring bed (to the detriment of my spine). Her body becomes lax, her face presses against my chest and she’ll have this faraway look in her eyes. From my top-down view, I see her long eye-lashes and beautiful left eye. In the warm glow of the incandescent bedroom lamp, the view is almost mesmerizing.

“She feels me, and is content” I’d think to myself. Then, I consciously register the moment into my collection of Vera-memories. No diagnosis, prognosis, nor final analysis can take these away from me.

Kidneys & Hypertension

Vera went for a renal ultrasound yesterday. There's good and bad news. The good news is, her kidneys are normal! She had a duplex kidney and a cyst in one of them but somehow they seem undetectable at this 6th month scan. We don't really know what to make of it, but are happy there are no issues there.

However, this means that her high blood pressure is not brought about by renal issues. According to one Tri18 mom, there are two types of hypertension:

Essential Hypertension: brought on by issues with the kidney, can be treated with medication.

Pulmonary Hypertension: If Primary - there's no known cause, no treatment and eventually fatal. If secondary to respiratory or apnea issues, if these issues are treated it can be managed.

We'll have to find out what Vera has.

Happy 6th Month

It was a gathering of all the people who loved her. Great grandmother, grandparents, aunties, uncles, cousins, newphews...the people who've been coming quite regularly to see the little girl and to help Ian during the day. Vera cooperated for the photo op and was on her best behaviour. Too bad she couldn't taste the delicious Coffee Macademia Cheesecake made by my auntie!

The Half Year Mark

Here we are today, 6 months since Vera was born.

It's a milestone mark for her. From a frail, skinny newborn, she's now a chubby little infant with folds in her thighs and a double chin. She almost looks like a different baby.

Seeing her grow beyond our expectations has been a humbling experience. We do not expect anything anymore, because the word 'expectation' holds no water. Instead we take her as she is. And are thankful for each day she's with us. We know that it's these happy times that we'll remember at the end of the day.

It's a milestone mark for me as well. I never really bonded with Vera from birth as much as Ian did. Perhaps because I never saw her coming from me, perhaps because I didn't breastfeed her, perhaps because of my post natal blues. But over the past few months, I've been working on our bond, and it's much stronger now. I can tell she likes me to sing to her, bring her down for walks, and rock her to sleep at night.

It's been a roller coaster ride, with highs and lows, ups and downs. Times of pure joy, times of pure frustration and despair. But here we are today. And here she is today.

Nothing else really matters.

Heart Update

Vera saw the cardiologist yesterday. Her PDA has fully closed! It's a miracle, isn't it? It was a large one at birth, became a small one at 3 months and now fully closed at 6 months.

This little girl is a fighter with a heart that wants to beat on.

However, our joy was tempered by some not so good news. Vera's blood pressure is higher than normal for babies. They took it once when she was crying and it was close to the levels of an adult. I've read that hypertension is one of the issues for T18 children, and medication must be taken to control it. It can also be a sign of problems with the kidney (renal function).

We're going for ultrasound scans for her kidney next week, before the doctors decide on further course of action. Fingers crossed!

How Are Her Eyes?

Vera saw her Eye Doctor today. Her corneas have been cloudy since birth, but have been gradually clearing. The good news is, the clear portions are much clearer now. However, the thick, cloudy portions aren't really clearing, or very slowly.

That means she probably can see partially, but not with the clarity that we enjoy. I guess it's more of blurry shapes, outlines and movement for now.

Aside from her feeding issue, having her vision improve is the main thing for Vera. If only she can see! I believe she would be more easily entertained, and less easily insecure.

Having said that, it's a blessing that she can hear. With our voice and our touch, we still can cheer her up, calm her down and reach out to her. In my eyes, that's good enough for now.

Flowers for Vera

I've never received such a huge bouquet in my life. It was almost as heavy as Vera, close to 5kg I believe. But the flowers weren't just for me. They were for the little girl. All the way from friends in Japan. Looks like she's got some big fans!

Sucking Her Thumb

Most babies do this since birth, but for Vera, it's a milestone. Most T18 babies do not learn this skill.

She's been practicing for a while now, always in slow-mo fashion. Sometimes she gets the aiming right, sometimes it misses the target. But she's getting there.

Last night, she aimed perfectly and it was a home run! She then continued to suck her thumb happily.

Let's see what new stunts she'll surprise us with as she grows!

Finding My Voice

Another little miracle has happened since Vera came into my life: I've found my voice again.

No, not the one you hear, but the Inner Voice that runs through your head like a continuous stream of consciousness.

I used to have it with me. But with the pre-occupation of working life, it somehow disappeared. The irony was, I was a copywriter, a crafter of words, yet I had no words running through me. I tried to egg my thoughts onto paper, but failed always.

Now, the words flow like water. Almost as if the floodgates in my brain have been opened. Even my copywriting comes much more naturally and insightfully now. (Yes, Vera's helped me improve in my work!)

Perhaps this is the gift she's given me. The gift of finding my self.

She Can Wear Them

New clothes. They came in a flurry with Vera's arrival. Friends and well-wishers from far and wide gifted us with them. 0-3 months, 0-6 months...the labels said.

Back then, I felt nothing receiving them. In fact, each time I saw them, especially the bigger-sized ones, I'd think to myself, 'What's the use? Vera would probably not get to wear them," So I stashed them away in the storeroom.

As the weeks passed and we were into her 3rd month, we found that Vera was indeed outgrowing her 6 sets of Mothercare newborn vests. They had been the only thing small enough for her wear since birth.

Vera was actually outgrowing her clothes! The realisation filled me with such joy.

Now, I relish the very act of packing away clothing that no longer fits her. I'd find every excuse to relegate them to the "Outdated Pile". "This one's a little tight at the arms...that one's exposing her tummy..." Somehow, seeing the "Outdated Pile" grow fills me with an inexplicable feeling of pride.

I'm not the only one who's excited by Vera's outgrowth. The clothes lying dormant in the storeroom are probably stirring too. Especially the ones that once adorned another little baby girl named Jorryn. One by one, they're being hoisted out of darkness, and given new life again.

So keep growing alright little Vera? There are still so many clothes, waiting for you to wear them.

Ordinary Miracles

What a beautiful oxymoron!

And how true. That it's the most unspectacular, taken-for-granted things in life that are the ones that are the most awe-inspiring.

Like our eyes. They open for us every day, asking only for a blink now and then to keep going.

Like our heart. Pumping since the day we were born, never once stopping to rest or skip a beat.

Like our legs. Taking us wherever we wish to go. Scaling mountains, to the depths of the oceans, to explore faraways lands.

Like our fingers. Running tiring on a keyboard, churning out words to earn our keep, drumming on a piano to create sounds to soothe our souls.

There's so much more to cherish in the very ordinary. The things we look at but often do not see.

Do you see the "i" in "miracles"?

Divorce Rates

According to literature on the subject, the divorce rate among couples with a disabled child is an alarming 75%.

I can imagine why.

The stress of coping with the demise of a lifelong dream of having a normal baby; the struggles of dealing with everyday challenges that come with the special needs of such children; the complete end to any semblance of a previous carefree life...they can all collide and cause conflict.

What of the other 25%? Their marriages change too, I believe. Becoming stronger, deeper, welded together by a common cause.

Whichever way it is, keeping it together is hard work. Which is why these days, I try my best not to sweat the small stuff.

Months ago, I'd flip if let's say Ian doesn't change Vera's diapers and the sheets get wet.

Now, I just let it go. So one person oversleeps and misses her feed, another packs the wrong size of diapers, or spills the milk, or forgets this or that...it's really not such a big deal. What matters is that both parties are doing their very best already.

Will my marriage belong to the 75% or 25%?

Vera has shown us she's beaten the odds 90% to 10% to be here today. We ought to follow in her footsteps.

Inconsolable

My patience has been wearing thin recently. Vera seems to be getting more and more inconsolable. Last evening, she woke up from deep sleep howling, as if something had frightened her. She cried for the next 5 hours.

There was nothing we could do to pacify her. No amount of patting, carrying, cuddling or singing. And when we started to feed her, it just got progressively worse.

Of course, as with every crying feed, it takes FOREVER to go down the syringe, and after you’ve finally got the last ml done after 1 hour, vomiting is the end result. She swallows too much air and it just has to come out.

The persistent crying really gets to me. I experience it maybe once a day and already I’m on the end of my tether. Imagine Ian, handling such feeds 3 times on one day last week, (Disaster Day he calls it), all alone.

I’ve been asking myself, “How long more can I do this? This tube feeding thing? This tape replacement thing? This vomiting/cleaning/washing thing?”

Ian’s answer? “Just do it.”

Sorry, but I’m so far from attaining that mentality. I feel like giving up more often these days, feeling like just having a BREAK from this endless cycle. Yet I know I’m in no position to complain because Ian goes through it 24/7. And he’s not once lost his temper.

Sigh….this bringing-up-baby role. The toughest thing I’ve ever had to undertake in my life.

A Walk in the Park

Given Vera's adventure-spirited dad, it's no wonder Vera's getting her hiking training early.

Last weekend, we went to check out a section of the South Ridges Walk, a new trail through the foresty south-western part of Singapore.

Carrying all 5kg of her for nearly 2 hours, even with a sling, my back was aching and I had to see a chiropractor the next day. A walk in the park for her, but definitely not for me!

Cliffhanger II

Cliffhanger II : Escape from Cradle Island

Like all great movies, there's always a sequel.

Starring Vera, living dangerously once again.

S.O.F.T Conference

The S.O.F.T (Support Organisation for Trisomy 13 and 18) conference in Denver has just ended. Of course I had known about it a month or so before. But didn't know how important it would be for us to attend.

Now I wished we hadn't missed it. Basically, once every year, doctors, parents and children with Trisomy come together to share new information, support, care and treatment issues. According to one mom, the doctors who take part voluntarily to help the kids. Also we could have met other parents and learnt a lot from them. Of course, also to see how other kids like Vera.

Most importantly, we'd be among people who know exactly what we're going through. And we'd feel like we're not alone at all.

Well, next year ok, Vera? You can go on your first plane ride.

Vera's Playmates

For a person who's just a few months old, Vera's has got quite a following of friends.

There's the great grandmother who, at 88 years of age, comes to sing Teochew songs to her.

The grandaunt who comes and takes her down for walks in the park.

The granduncle and aunt who come and keep her entertained.

The auntie who comes weeknights to calm her during her most colicky time of the day.

The auntie who rushes by for a quick visit during her lunchtime.

And of course, her regular, biggest fan, Papa Penguin, whom she can always count on for some entertainment.

Lucky girl.

Hurricane of Hair

Vera's abundant newborn tuft of hair has almost completely shed off, revealing new strands perfectly formed in a cyclone. It's just a strange thought, that something so tiny shares the exact shape with a weather phenomenon of such mega proportions.

So what is big and what is small? Perhaps they are one and the same.

Sleep Smiling

At 5am this morning, I caught Vera smiling at Tiny 3 times in her sleep. Must be dreaming about him...

A Small Scare

Last night, we had to change Vera's tube. Problem was, she was sound asleep and we didn't want to wake her.

I could do this easy, I thought. I'd done it before when she was sleeping and she didn't feel a thing.

This time however, it went awfully wrong.

Once I'd inserted the tube, she choked. That's normal. But then, her whole body suddenly became stiff, hands straight like rods, her eyes opened wide and staring.

Ian! Come quick! I called. The thought flashed through my mind: Is she having fits? Is she going to die?

Immediately, we pulled the tube out, and shook her. (Should we be shaking her?)

Ian carried her and thankfully, she started to cry. What a relief.

When she stopped, I started to cry uncontrollably. The shock and the thought that I caused it was too much to bear.

"Just do what's needed," Ian said. Meaning to reinsert the tube. Because it was time for her next feed.

So, much as I didn't want to, I regained my composure and did it.

I thought to myself, if I can't handle one small scare like this, how am I going to handle much worse?

Happy 5th Month

This is 'Tiny' (pro-nounced Tinny), Vera's boyfriend. Look at how happy she is when she sees him. Guess she'll be celebrating her 5th month with him. So fast forget us already.

My Weakness

...is my tiredness.

Months of waking up in the middle of the night have finally reached burnout point.

Initially, it was still manageable. I could do it, wake up and sleep on demand.

As the weeks go by, it's getting harder and harder. Tiredness sets in earlier and for longer.

I get ugly when I'm tired. I get cranky, grouchy, my body shuts down. I don't feel like picking a crying baby up.

Ian picks up when I drop the ball. And it's a lot of the time now. So he gets really...you guessed it, Tired.

Life now is just one big Rush.

Rush to work. Rush to finish work. Rush home from work. Rush to finish dinner. Rush to bathe. Rush to feed Vera. Rush to prepare milk.

Just so that I can work in enough sleep to wake up in the middle of the night not feeling like a zombie.

Is there light at the end of the tunnel?

To Know or Not to Know?

Reading the views of T18 mothers on pre-natal diagnosis has led me to form my own opinion on this:

If I could do it all over again, would I have done an amnio and terminated my pregnancy upon learning of the diagnosis?

One year ago, the answer was yes. I had gone for the NT test to look for Downs. If that had been positive, I was prepared to terminate the pregnancy.

Today, my perspective has changed totally.

Thank goodness I wasn't "old" enough to be offered an amnio (Usually for women 35 & above).
Thank goodness I didn't have to find out about Vera's diagnosis prenatally.
Thank goodness I didn't have to be under pressure from whoever to terminate the pregnancy. Thank goodness I didn't have to live with 6 months of trauma, worry and uncertainty.

You see, from what Vera has shown us, I've learnt that even the most "hopeless" diagnosis does not give anyone the prerogative to pass a death sentence on life.

Life, once formed, must decide for itself how long it wishes to sustain itself.

Sometimes I think to myself, now wouldn't Vera be mightily upset and indignant if we had known prenatally and toyed with the idea of terminating the pregnancy?

"What? You doubt my fighting spirit?" she'd probably say. "I struggled to sustain on just one artery for nutrients in your umbilical cord while my peers have two, and managed to come out looking not too bad, don't you think?"

"Look at me, I'm still here. Luckily you did not pull the plug on me. Otherwise you would have really regretted not knowing a charming babe like me ha ha ha. (Of course, I know I can be quite a ruckus most of the time.)"

Bottom line is: So what if you know prenatally? Would you know whether it's really a lost cause? For sure?

Vera has spoken: No.

I'm glad she got the benefit of the doubt.

It's Playtime!

Vera loves playtime. Just look at her.

Sometimes she'll smile, but even if she doesn't, she has this perpetual happy look.

Somehow, raising her hands all the way up, and tapping them on her body seem to illicit this look of joy on her face.

Each session doesn't last long however, maybe 10 minutes, and usually it's in the earlier part of the day.

If you wanna catch Vera in a good mood, mornings are best!

Hand Raising

"Teacher, I have a question. Er....forget what it was.

Lemme think."

A Mother's Instinct

This morning, sitting at my desk at work, I suddenly caught a whiff of Vera's sour-smelling poo.

"Is she poo-ing?" I sms-ed Ian. "I can smell it."

"Yes big one," he replied.

Unbelievable, isn't it? A mother is so tuned to her baby's channel.

Life is Life

I reproduce here a quote from Mother Teresa:

"Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it."

Tube Insertion 101

Vera hates this. And we hate to do it.

Everytime we touch her chin, she knows what's coming. She uses her hands to fight it off and starts wailing.

She chokes as the tube goes down her throat. It's painful to watch, but it's something that has to be done. So we do it.

You'd think it's over once the tube is nicely in place. Wrong.

Vera keeps pushing the tube with her tongue and it gets wet with saliva.

The tape comes loose, the tube shifts to the side of her tongue, tickles her throat and she throws up.

Clean up milky mess. Change her clothes. Change the sheets. Change the tape (which irritates her throat again).

New tape gets wet with saliva. And the whole process repeats itself.

What's the alternative? Putting a button in her tummy or, training her slowly to swallow. It may be a long shot, but hey, I know of one mother who has succeeded in getting her T18 infant to take milk by mouth after 6 months on the tube.

There is hope yet.

We may know what Vera cannot do now. But you never know what she can .

Milk Angel

4.5kg at 4.5 months - that's where Vera's at right now. There's a pink glow in her chubby cheeks, not to mention her buttcheeks. She's even developed a double chin.

She's a really lucky girl. A milk angel has been giving her breastmilk to Vera for over 3 months now. It is the best gift Vera can receive, because it gives her much needed immunity against common infections.

Milk angel, thank you for making such a big difference to a little life.

Learning from Penguins

The heart-wrenching film 'March of the Penguins' aired on TV last night and I caught it a second time.

It's a movie that will move any parent because you're in the penguins' shoes.

For 2 bitter winter months, Papa Penguin holds a fragile little egg between his feet, protecting it from the arctic ice storms, while Momma penguin journeys to find food.

Of course, my day job is nowhere as treacherous, and bringing food home is more like getting "takeaway".

But my focus here is on Papa Penguin.

He doesn't eat for 2 months. He stands motionless for 2 months lest he drops the egg. When the chick hatches and Momma isn't back in time, he regurgitates an emergency morsel of food he's been storing for 2 months for his chick. And when Momma comes home fully fed, then he begins HIS long journey to find food for his starving body.

Watching Papa Penguin, I couldn't help but develop a new awe for the animal race.

And a deep respect for my husband.

Little by Little

When Vera is sleeping, feeding her gives me lots of time to stare at the milk going down.

And there's so much you can learn from the exercise.

Like the fact that when you're in no particular hurry to have it go down (because she's sleeping), and don't pay attention, it goes down really fast!

But when she's fussing and you're desperate for it to disappear so you can put an end to her misery (and yours), you can stare all you want and it seems to take forever to move down a notch.

It's a lot like life, isn't it? The more badly you want something, the more you focus on it, the more it doesn't seem to move in the way you want. Let it go, forget about it, do something else, and when you come back, chances are, things are going the way you want.

Also, when I'm tired, the milk is akin to my patience level: Going down. But when Vera is sweetly sleeping like an angel, I look at it and see it as time with her, slowly running out.

At other times, I see how the amount of effort that goes into bringing up a baby...and what a slow process it is.

Diaper by diaper, bath by bath, syringe by syringe.

Do It Anyway

If my baby cannot see
I'll smile at her anyway.

If my baby cannot hear
I'll sing to her anyway.

If my baby cannot understand
I'll explain to her anyway.

If my baby cannot hug me
I'll cuddle her anyway.

If my baby cannot call me mummy
I'll be her mother anyway.

If my baby should one day leave
She'll be with me anyway.

Ways of Seeing

If there's one thing that Vera has taught me, it is this: A lot of things in life depend on how you choose to see it.

Do you see Vera's right eye that cannot see, or Vera's left eye that can almost see?

Do you see Vera's tag on her cheek as a blemish or a really big dimple?

Do you see Vera's clenched fists or fingers that hold your hand and won't let go?

Do you see Vera's left ear that cannot hear or her right that can?

Do you see Vera smaller than any baby her age or growing amazingly well for an Edwards baby?

Do you see a child that won't be here for a lifetime, or a child that's here now in your life?

I choose to see the latter in all the above.

88 Years Apart

...together forever in one photo.

Vera is 4th in a line of first daughters - my grandma, my mother and me.

This is one of those photos you keep in your heart forever.

Biggest Smile Yet

Vera is a morning person. Wanna see her flash her pearlies...err, I mean soon-to-be pearlies? Wake up at 7am!

Cliffhanger

Our little friend like to live dangerously.

Cool cucumber

Last Sunday, we brought Vera to Pasir Ris park. She was shielding the sun from her eyes.

Daddy lent her his shades.

I Am The Child

I reproduce this article here by an unknown author because it moved me to tears.

I Am The Child

I am the child who cannot talk. You often pity me. I see it in your eyes. You wonder how much I am aware of...I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or are just doing your duty by me.

I marvel at your frustration, knowing mine to be far greater for I cannot express myself nor my needs as you do. You cannot conceive my isolation, so complete it is at times.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated, I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the world's standards...great strides in developments that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable...I give you instead opportunities.

Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you would ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.

I am the child who cannot talk. I am the child who cannot walk. The world sometimes seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, Oh I've dropped my spoon again. I am dependent on you in these ways.

My gift to you is to make you aware of your fortune - our healthy back and legs, your ability to do things for yourself. Sometimes people appear not to notice me, I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.

I am the child who cannot walk. I am the child who is mentally impaired. I don't learn as easily, if you judge me by the world's measuring stick.

What I do know is the infinite joy in the simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.

I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you, I teach you of respect for others and their uniqueness. I teach you about how very precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you about giving. Most of all I teach you hope and faith. I am the disabled child.

That Baby Smell

No perfume in the world can match it. A baby's head has a scent that can melt your heart. A full milk diet, sweat and flaky cradle cap combine to create a heady musky smell that gives this mommy a real high.

Who needs heroin? I've got Vera.