A couple of weeks later we learned that the baby has a terminal genetic, but not inherited, defect. At best we should expect days with her, but most don't survive hours.

We buy thin ceramic plates at a thrift store, write "Trisomy 18" on them, and smash the plates in helpless rage.

We lived in Phoenix at the time. We had moved to AZ because we love the desert. But our new community there was not ready to carry us through this. So we moved back to Ohio.

By the way, through all of this, our firstborn is absolutely processing these events in her own way, at 3 years old. I can't even imagine. I still don't know how to talk to her about her sister. 💔

We moved "home" to Ohio (though I grew up here, it has never felt like home to me). We settled into our new home, and prepared for a tough medical battle, followed by grief.

We prayed. So many fucking prayers. So much pleading with God.

In the 33rd week, during the night, the baby stopped moving.

We rushed to the hospital, and my wife birthed our dead daughter. We held her, had some photographs taken (thanks to a charity called Now I Lay Me Down To Sleep).

And then they took her away. We left the hospital, me pushing my wife in a wheelchair, her holding a box, instead of a baby. Walking past expectant parents as we left. 💔

I had learned, from losing my mom & grandfather, that I needed to grieve differently. I always related more to those cultures who keen when grieving, than the icy Anglo-German stoicism of my culture.

So we researched grieving rituals and decided upon an Irish Wake.

Our Irish Wake was hosted at my mother-in-law's home. We had 4 rooms:

- 1 for alcohol (and it was supposed to stay there) & loud convo
- 1 room for food & loud convo
- 1 room with quiet music and library voices
- 1 room for viewing & keening

…plus the garage for blazing one's eyes red. 🍁

It was the best viewing/showing like experience I've ever been part of. I hate all our death rituals. But that Irish Wake was truly helpful. Not enough on its own, but helpful.

A few days later, we had the funeral & burial. I remember after the funeral, standing alone outside the church, holding her casket. All alone. Waiting for a seeming eternity for the hearse to come. My heart ached so much more than my arms. The memory still wounds me today.

The hearse did eventually arrive, as did my wife & our oldest. We drove to the graveyard. When the burial blessing was over, our oldest grabbed a handful of dirt, threw it on her sister's coffin, and declared "it is done".

😭😭😭😭😭😭😭😭

We were too spent to take care of ourselves, so that night, we slept at my mother-in-law's. The next morning I got up, wife asleep, kid watching TV, and my mother-in-law, and *her* mother, immediately start telling me all the things I need to do to help my wife grieve & heal.

I stormed out, got coffee, went to our own home to grieve a bit. My wife's childhood friend calls to chew me out for leaving, as if I were abandoning/divorcing her "leaving", because that's what my in-laws were accusing me of, since I stormed out that morning. 🙄

These experiences, immediately after we buried our daughter, made it clear to me that I was not allowed to grieve. I was/am the sole income earner (my wife wanted to home school, we're hippies). I couldn't drop the ball to grieve. I had to keep us housed, clothed, insured.

And then there were the friends. I lost so. many. friends.

My grief and anger were "too much". I didn't recover fast enough. They changed the subject when I spoke about her.

(Oh, and the friends that stayed? We've since learned they're all neuro-divergent themselves.)

So it wasn't until a year or two ago, a full 10 years after we buried her, that I felt like I could even begin to grieve Mary Bernadette.

I'm still broken from holding it in for that long.

My wife wrote a story about our experience from her perspective. The story is called Dragonflies, and it is published in the anthology Three Minus One:

https://bookshop.org/p/books/three-minus-one-stories-of-parents-love-and-loss-brooke-warner/7727683?ean=9781938314803

We celebrate her birthday every year, with our 4 (!) living children.

there is an addendum to the original Twitter thread, which i want to re-write before bringing over. and i'm spent from migrating over the "main" thread tonight. thank you for reading.

@f1337

Sending hugs