Here's Looking At You

When you have a child that doesn't talk, you learn to read her every expression.

This is Vera's "intrigued" look - she's anticipating some cuddle, or tickling coming her way. It's also the look I get only when I sing the song I wrote for her "Good morning Vera". "I know that one" she's saying. I've been singing it to her for months, ever since she was still in my tummy. Finally she can recognise it. It's an amazing feeling.

This is Vera's cheesy smile. It says I really like what you just did. She hasn't laughed ever since that rare moment caught on video, but this smile is good enough.

New Button

Vera had her button changed today, 3 months after it was inserted. It had been leaking because the valve stopping the milk from flowing out had become faulty. In less than 3 minutes it was yanked out, and a new one stuffed in. There was bleeding, a little of gooey insides outside, and a howling baby. But she was such a trooper. She remained motionless for the procedure and stopped crying soon after.

She's vomited quite a bit after the change. Some bleeding on the insides of the lining can irritate the stomach. Hopefully it settles.

Less wet tissue-wet clothes-wet gauze days are up ahead. Hooray!

It's Scoliosis Alright

The X-ray says it all. Vera's does have Scoliosis and it's worse than I thought it would be. Her curvature is 18 degrees. The pediatric surgeon said they'll likely recommend a brace when it's between 20-25 degrees. As for now, all we can do is "monitor".

Now, this word "monitor". Do you know how a parent reads it? It like saying 'sit back and wait and watch it get worse'. Is there anything we can do to stop it from getting worse? "No, there isn't. All you can do now is monitor."

Seeing Vera's insides up close for the first time brought me face to face with the workings of Trisomy 18 once again. This genetic condition has given my baby an imperfect spine from birth. And there was nothing I could do about it. Somehow, this hit me pretty hard. Maybe because I have spinal misalignment issues myself, and know the effect it can have on my breathing and the aches and pains I sometimes feel. Oh, she's just a baby!

It will take some time (it'll happen don't worry) for me to accept the stark reality of her spinal condition.

Welcome to Holland

WELCOME TO HOLLAND

by Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A Good Day Out

Over the weekend, we took Vera to Singapore's newest attraction - the Marina Barrage. It's a new dam that locks in a reservoir of water at the mouth of the Singapore River leading out to the sea. It has a spectacular view of the Singapore skyline - you can see the Flyer, like the London Eye, from here. The sun was setting, the breeze was blowing. It was one of the best outings we've had with her.

Cigar Anyone?

Our recent visit to speech therapist Vasu brought good news. He saw how Vera was drinking water by the spoon and was clearly impressed. That's a skill that is supposed to be more advanced than bottle sucking. On top of that, kids usually start off therapy with thicker textures before moving on to liquids which is supposedly more difficult. So Vera's gone the other way around! She doesn't take well to puree. In fact, he went as far as to say that she probably has mild to moderate oral dysphagia, and not pharyngeal (further down the throat) dysphagia. This is a therapist with nearly 15 years of experience so I was really happy with his words. I just felt like, all the effort with therapy every day for the last 10 months...the toothette, the face massage, the spooning, it paid off! It seems it all clicked for her after her lateral cleft was repaired.

So now, we're going backwards and starting Vera on food. They must be high-taste, such as salty or sweet crackers. The aim of this is more to awaken her different tastebuds, rather than to get her to ingest something. Sour is not recommended though, such as orange juice. She tends to choke on citrus juices.

The strips of crackers seem to do the trick. She plays with little bite-offs with her tongue. We're taking it slow though. Cigars are best enjoyed that way anyway.

Special Child

A friend of mine posted a really special poem on their blog. And it reminded me of one that I'd come across in the earlier days. Just thought I'd share it again.

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.

Cheek to Cheek

When Vera is well-rested and in a good mood, it's grins galore. Here you can see her one big front teeth and 2 little bottom ones. Plus a double chin that's steadily growing. She smiles so readily nowadays, and is really so much more enjoyable. Mommy picked the right time to stay home!

Back Breaking Work

It's been two months now that I've been home with Vera. It's back-breaking work, literally. Because of their low muscle tone, kids like Vera are like 'dead weight' when being carried, so all the weight rests on your spine. My mom has over-strained her spine helping out with all the bending over, carrying and physiotherapy. My back feels it too, it's too used to a life of office work and lack of exercise. This in comparison, is the most exercise I've had on a daily basis!

Some bad habits:
1) Bouncing Vera in my arms sitting on the bed like a 'yao lan' to get her to sleep.
2) Bending over during diaper change with back curved.
3) Hunching while carrying Vera

Now, I try to do these:
1) Vera on floor: Carry her pressed to my body first, then standing up with back straight.
2) Vera in cot: Bend over during diaper change keeping back straight.
3) Less bouncing
4) See a chiropractor!

Hopefully, Vera gets more tone in her back muscles. So we can give ours a break.

Vera 1 Us O

It's been 2 weeks and Vera's still not on the CPAP at night. My initial enthusiasm in getting her onto it waned by the 1st week. The result of rejection! haha. With us so sleep-deprived, the first thing we want do when she falls asleep at 11.30pm, is to sleep ourselves, and disturbing her with the mask just risks waking her up, and we so don't want that!

We've tried a smaller, nasal mask. But even so, it's having something covering her face that gets her flailing her arms vehemently in her sleep. So, yeah, we've chickened out for now, giving in to Vera's adamant refusal of the contraption. Soon, we'll have to return the CPAP machine which was loaned for trial for a month.

So I guess that's the situation for CPAP for now. Vera 1 - Mummy and Daddy 0.

Button Care Part 3

We're into our 3rd month of button care and I must say, I'm very happy that my fears of an oft-bleeding over-granulating stoma have been unfounded. In fact, the granulation (reddish tissue) has shrunk in size, such that we can now actually see the stem of the button.

A lot of work goes into this tiny contraption - copious amounts of tissue and sterile gauze changed over and over after every feed to soak up the leaking milk and greenish discharge. Now that we've gone from 3-hourly feeds to 2-and-a-half-hour feeds, it sometimes seems my day is an endless cycle of feed Vera, change tissue, change gauze. But it's worth it if Vera's granulation stays like this. Many thanks to the kind mother who gave so much gauze to us...this is the happy result!

Rollin' Good Times

Introducing the RollerBabeTM. Can roll off pavements and into ditches. Performs best in the morning.