"Not compatible with life"

They tell parents who are expecting a baby diagnosed with Edwards Syndrome (T18) that the diagnosis is 'not compatible with life' and if they don't tell you in so many words, they strongly argue for termination regardless.

I never considered my baby 'not compatible with life' - I considered her 'not compatible with death'. Now that she's gone, I consider myself 'compatible with death' though...

I have no clue how to make my way through this grief. I'm lucky I already have children. I should be grateful for what I have. I'm lucky that Willow is no longer suffering. I'm grateful that I never had to make a decision to terminate... Willow quietly slipped away and we found out that her heart had stopped on New Year's Eve. I am grateful that the medical side of things went well... Physically, I'm not suffering... but I feel like I should be. Why do I still have a pulse when hers stopped?

I want to be where my angel is. I miss her so much and I feel so so very empty.

In the real world, people don't want to know about the loss of a child. We are expected to suffer in silence. A dead baby is nobody's business. Without the memories of life, all it does is to remind us of our own mortality - the brevity of our life span... and perhaps about the lack of meaning... or, more accurately, the total nonsense that is the 'meaning' we try to give our lives by making a name for ourselves and gaining approval through our actions in the world.

But I have the memory of holding my very tiny baby in the palm of my hand. I have the memory of meeting her spirit in my dreams. I have heard the voice of her soul and I don't know how to make it stay.... When the placenta wouldn't come out and the blood didn't seem to want to stop gushing out of me, I secretly wished for it to flow until I too could slip away... to be with her, to be spared some of the pain. I'm not proud of it... but I finally know just to what degree death can be mercy now.

I was rushed to theatre for evacuation and it went well - they managed to stop the bleeding. And yes, I was grateful to still be alive when I came out of general anesthesia... I held on to all that was good about life, almost as if someone had reminded me of the reason to live when I was unconscious... the love I share with those still here.

The hospital gave us certificate of her birth. It had her time of birth and it states "Willow, daughter of Lisa and Terry - born silent at 9.28 AM on the 5th of January, 2011." I wanted her ashes but they said she is so small there will be nothing left - she more or less evaporates... So in a sense, she is everywhere. But I already knew that. Everything reminds me of her. Everything.