30 November 2011

Any Trisomy 18 Moms in Sydney?

I am posting on behalf of Jen, a mom at 24 weeks with a bub with full Trisomy 18. She lives in Sydney and would like to know any family with Trisomy 18 kids there.

Would really appreciate the support for her. Thanks!

29 November 2011

I Don't Understand

It baffles me.

I don't understand why Vera is still here.

I don't understand why she is so happy every day.

I don't understand why she is doing as well as she is. 

I don't understand why she is showing improvement far beyond what's expected of her.

I don't understand why she's been born with such a dreaded condition, only to be spared the worst of it.

As many of my friends' grapple with serious lung and heart conditions and loss of their Triers, all the more I ask: "What have we done to deserve Vera?" "What have we done to deserve the relatively smooth ride thus far?"

The humbling answer is: "Nothing."

Which makes it even harder to understand. 

But it is through the un-understandable, that we learn that not all of life is knowable.

And the best thing to do is simply accept the mystery of grace. And be thankful big time.

28 November 2011

The Decision to Freelance

I have been thinking about whether I should get a full-time job.

The obvious perks: Paid leave, medical insurance, employer-paid retirement savings, and steady income.

But there's always a nagging worry at the back of my mind. What if Vera falls sick? Will I be able to just take off at a moments' notice? Knowing that with her, a bout of illness is a 2 week affair. And because we've committed to round-the-clock personal care for her whenever she's at the hospital, I'll have a shift to do.

Also by working full-time, will I get to spend enough time with Vera?

It becomes clear to me that I have to freelance.

It means that I can decide whether to take up a project. If I prefer to spend time with Vera or bring her to the doctor's, I can choose not to take up any. If she falls sick, I can stop work immediately.

It seems to make sense.

I am so thankful that I have a job that allows me to freelance.

22 November 2011

This Post is Thanks to Cara

This post is thanks to Cara, for reminding me not to stop blogging!

What time I have now is spent with Vera and Daen, so blogging has taken a backseat.

But blog on I must. Just a quick update to say that Vera continues to improve.

Major milestone for her: She's started to lift her leg and put it forward for a step while supported. This has happened in the last few weeks. She has gotten the idea of walking! Videos soon I promise.

As for Daen, he's starting to realise that Vera doesn't speak. So when we ask him to say 'hi' or 'bye' to Vera, he hesitates or doesn't do it, because he knows there won't be a response.