A Privilege

If I look absolutely thrilled, I was. Because the baby in my arms is none other than the beautiful Vera, who at less than a year old, has made it through a surgery, fought her way back from the brink, and made it home for her very first Christmas. For parents in the Trisomy 18 world, experiencing miracles like this is a painful privilege - the joy comes enmeshed with heartbreak, too much anxiety and too little sleep.

If you're a parent in these shoes and have asked "why me?", well, we are the ones who have been chosen - to know life, raw and unplugged. We live each day intimately acquainted with the basics of life - breathing (how hard, how fast), sleeping (what time, how much, how fitful), and waste matter (how much, how often, consistency, texture). And within these basics of life, are where its profound meaning is unearthed.

It was such a privilege to hold Vera today and momentarily feel the strength of her grip in spite of her frailty.

And the best part? We were decked in red and white stripes, a simply delightful coincidence!

Vera's daddy's ingenious contraption - A microphone holder! 

Now why didn't we ever think of that? Now more 

tube-feeding parents can take a much-needed break : )

Christmas Lunch

For the first time actually, we had a nice lunch with my aunt and grandma with Vera. I always make sure it's somewhere relatively less crowded, quiet and with aircon. If Vera's comfortable, she's unlikely to be cranky. 

It is a dream come true for me to be able to dine with her, outside, with relative ease. No more discomfort, arching, vomiting...oh I remember those days. I use to envy mummy Rae and how she takes Rachel everywhere and she told me 'your time will come'. She was right!

I'm happiest when I see my Grandma playing with Vera. It is not lost on me how precious these moments are, as my Grandma is already 90 years old.

We must make it a point to do this more often.

Holiday Cheer

All too quickly we've come to the end of 2011. Vera got a really pretty hairclip from Auntie Sher of Offsprings fame. I've been looking around for nice hairclips that don't pinch the hair but in vain (okay I've only shopped at the only store in Punggol.) Thanks Sher!

This other gift was a surprise - from a mummy who follows this blog, Stephanie. You'll be pleased to know that Vera enjoys it very much! It's perfect for us actually. She can entertain herself while we take a break : )

Meanwhile, we've been asking Daen to "teach chea chea" how to do things. Here he holds her hand and presses it on the piano.

Vera looking up to her 'big' brother (who's already graduated to a toddler bed). She looks shorter because of her weaker muscle tone in her back, but they are actually the same height now. Looking at this picture makes all the busyness worth it.

Guitar Girl

Without a doubt, Vera loves the guitar.

Before, she would just pay attention when I play and sing. Now, just hearing the sound of the strings and she can't contain her joy. Daddy captured her plucking the strings as well.

I just love that she responds so well to music. Probably because we give her so much of it!

Angel Charmaine

Dear Yvonne,

I knew something was amiss when you didn't respond to my email. I feared the worst.

That last thing I needed to hear was that Charmaine passed away on the same day as baby Ruth.

I am sure it is an extremely heart-breaking time for you. Those pictures you sent me of her deck up so prettily always are so precious now.

I celebrate with you those 36 months and 1 week.

Sincerely,
May

Rest Now Baby Ruth

It is with tears in my eyes that I write this.

Beautiful baby Ruth passed on yesterday morning after a valiant fight against a bad lung infection. She made it past the 1-year milestone.

Her parents are the bravest couple I've ever met. Soft-spoken, unassuming, but full of steely resolve and firm advocates of giving Ruth a fighting chance.

This is too hard to write about, so.

Rest now, dear little one.

3 Years 9 Months

3 years 9 months holds special significance for me. 

That is how old Vera is now.

That is also how long Annalisa lived.

Annalisa was a Trisomy 18 girl that I found on the Internet when Vera was a few months old. At that time, I was desperate to find a living case of Trisomy 18, or a family in Singapore.

I looked her mother up, I needed to talk to someone in my shoes so bad.

I learnt that she had just passed on. Till now, I remember what her mother told me: "She lived 3 years 9 months". She also looked at Vera's baby photo and said, "Your child is special."

Ever since then, 3 years 9 months had become almost a benchmark in my mind. I've wished for Vera to reach this point, because Annalisa did. Tonight, I looked at Vera and could almost imagine the same goofy happiness Annalisa exuded in her videos. 

I've lost contact with her mother and so will not post pictures.

Sweet dreams Annalisa. Wherever you are.