I am one of the two.🧵 about how #ActuallyAutistic folk process grief:

🐦 https://twitter.com/mykola/status/1516057830310256642

(this is a re-post of the most important Twitter thread I wrote)

This story is gonna meander. Because grief. Here goes.

Prelude:
I lost my maternal grandfather, who was more like a father to me than my actual dad, when I was 19.

I couldn't leave my bed for days. I couldn't eat. I got physically ill from the stress, and lack of self care.

My mother died 8 years later. She was my favorite person in the whole world. I still feel like part of me is buried with her. An important part of me. A part I miss almost as much as I miss her.

I was depressed for a year or more.

In the midst of which, I nearly lost my partner & oldest child in failed home birth that ended in an emergency C-section. I was in the fetal position on the "bed" for dads in the birthing room, balling silently, terrified I was gonna lose them.

They survived! But the trauma of nearly losing them was mine alone to process. My wife was drugged during the worst of it. She doesn't remember the terror at all. I still do, viscerally, tears streaming, heart racing, short breath as I type this.

About 2 years later, we were getting the 19 week ultrasound for our second child. It was all routine at first, then the tech started being weird & evasive, and called for the doctor. The doctor came and started talkingin medical-ese about how our baby wasn't "compatible with life".

I feel 🤢. My wife's grip on my hand is excruciating, almost bone breaking. (they were bruised badly after).

Then the doc starts to talk termination. My wife says no. So they separate us, as if I'm a threat or coercion. Once they have her alone, they try to hard sell her to terminate. (Arizona had a 19-week limit for abortion, and we were right at it).

We eventually leave, and are crushed and angry and helpless. But there is a sliver of hope, that maybe she'll be born and survive after some surgeries. Which is why my wife felt attacked by their hard sell to terminate.

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.