Though it's going on six years since the birth and death of our first child, Genesis, I still find myself slowly digging down to the roots of my grief and sadness. Every time I think I've made significant progress, I come across stories like this one, of baby Zion born with Trisomy 18, or this one of baby Grayson born with anencephaly, and my grief splits open my insides all over again. And I've only just come to realize that it's not merely the reminder that life is precious, no one is guaranteed tomorrow, etc etc. It's because these parents knew ahead of time that their babies were going to die, and so they made a concerted effort to make the rest of their babies' lives the most joyous days possible.

And I wonder: did I cherish the tiny bit of time I had with my daughter?

Sometimes I seriously doubt it, and that's what hurts the most.

We didn't know ahead of time that she would definitely die. We knew it was a possibility, but from everything that we were told, we'd thought that at worst she would likely be born far too early and we'd end up with an astronomical NICU bill and then be able to take home a tiny, wriggling miracle of life. We thought it would be hard but that it would all be worth it in the end.

And so no preparations were made ahead of time. We waited with hope, with bated breath, for the day my squirming pink baby would be born and rushed to the NICU.

And then, it didn't turn out the way we'd hoped.

The day she was born started out with a sense of dread and just got worse from there. The whole day was encompassed in fear. I don't know how I breathed that day, honestly.

And then, when she was born, there were no joyful tears as she was lifted to my chest. Instead, there was silence from my baby as she was rushed across the room as the neonatologists attempted to put her on a ventilator. There was me, still pouring out birthing fluids and trying to deliver the placenta, tied to the birthing table by IVs and monitors and other medical accouterments, screaming to the ceiling, sobbing my heart and lungs out until I didn't think they existed anymore, my obstetrician holding my hand and weeping quietly next to me. There was my husband, walking back across the room from where he had been with our daughter and the doctors, with death and mourning etched into his features.

We had no Now I Lay Me Down to Sleep photographer to capture in beautiful black and white our final moments with our child. We had no time to revel in giving her her very first bath. There were no cute photos with adorable first outfits, as the entire length of her life was spent wrapped in a too-big receiving blanket and our arms. I was so overwhelmed by the fact that I held a dying baby that my heart had no room left for anything else.

From the moment of her birth, I grieved the loss of her.

Did I really ever celebrate her life?

She was with us for one hour forty-three minutes. That's it. That tiny sliver of time was all she had here on earth. And how was it spent?

Weeping over her body as she made every tiny attempt to use her under-developed lungs to suck in life.

So this is the reason I still grieve. I'm not sure I'm mourning the loss of her anymore. But rather I'm mourning the chance we had to celebrate her life while she was here.