23 August 2009

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.

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