You think you know, but you have no idea
April 27, 2017 4:58 PM   Subscribe

We spent months bracing and preparing for the death of our daughter. But guess what? We weren’t ready. Royce Young writes about his unborn daughter's anencephaly, and the journey of despair, purpose, and hope he and his wife undertook.
posted by Pater Aletheias (27 comments total) 19 users marked this as a favorite
Oh my goodness.
posted by The corpse in the library at 5:11 PM on April 27, 2017

I told myself I wouldn't cry and goddamnit I lied
posted by infinitewindow at 5:19 PM on April 27, 2017 [4 favorites]

Huh, interesting. One of my children was born with anacephaly (unexpectedly, the ultrasound technician did not submit their report to my midwife and didn't say anything to me) and at the time she was born I asked about organ donation/research but was told it was impossible. I had a student midwife-in-training as well, so my main midwife was able to give her some good lessons for her future career at least). It is awesome these parents put so much effort into organ donation - it is so, so important.
posted by saucysault at 5:38 PM on April 27, 2017 [11 favorites]

Buffy: Was it sudden?
Tara: What?
Buffy: Your mother...
Tara: No. And yes. It's always sudden.
posted by Ian A.T. at 5:47 PM on April 27, 2017 [9 favorites]


My daughter's oxygen deprivation was extreme enough that none of her organs were salvageable but her eyes were donated to research. I get it. This family is still pretty super awesome.

Bizarrely my next child needed eye surgery on both eyes and his specialist talked about research and the need for infant eye tissue.

Sign your donor card/go on your registry but also please talk to your loved ones about your wishes - sometimes a card is not enough.
posted by warriorqueen at 5:48 PM on April 27, 2017 [14 favorites]

I made the mistake of reading this on the bus home, where it was very dusty. If I had read it at home, I could've just had a proper cry.
posted by nubs at 5:52 PM on April 27, 2017

Oh gosh oh gosh gosh gosh
posted by Hermione Granger at 5:59 PM on April 27, 2017

posted by Bringer Tom at 6:12 PM on April 27, 2017

posted by potrzebie at 6:25 PM on April 27, 2017

As someone whose wife is 30 weeks into a complicated pregnancy, when you hear "non-viable" from a doctor, its like the world is caving in on you. Luckily in our case, we seem to have a best-case scenario with our little girl. I guess we'll find out for sure in our upcoming appointments with pediatric specialists. So while I don't know everything they're going through in this article, I have caught a glimpse of it, and I would happily give all I have to never go down that road.
posted by blue_beetle at 6:39 PM on April 27, 2017 [17 favorites]

I don't know how people summon that kind of strength. What a heartbreaking and beautifully told story.
posted by donnagirl at 6:46 PM on April 27, 2017 [2 favorites]

My God. The extraordinary generosity of that family. I hope they know that what they did was truly heroic, even if it didn't turn out quite the way they'd hoped.
posted by praemunire at 6:53 PM on April 27, 2017 [14 favorites]

There should be a medal for the kind of bravery and physical fortitude Keri demonstrated.
posted by The corpse in the library at 6:55 PM on April 27, 2017 [11 favorites]

Stories like this get fewer hits than others we are more familiar with. This is too bad. We all hoped--or still hope--that the internet would increase our connection with each other, and hence add to the mutual compassion that nurtures humankind.
posted by kozad at 7:23 PM on April 27, 2017 [3 favorites]

Stories like this get fewer hits than others we are more familiar with.

Most people avoid pain, no matter how much it might educate them or build their character. And reading this story was the concentrated distilled essence of pain. I am glad I did it and learned what these folks did, but I can understand why a lot of people bailed at the point they realized what "anencephaly" meant.
posted by Bringer Tom at 7:59 PM on April 27, 2017 [3 favorites]

I am very glad for them that in the end, at least Eva's eyes could be used. They made a choice to put themselves through a long, painful time in the hope that, in the end, someone else's child could be helped by it. That was a generous decision to make in the midst of their own disappointment and grief.
posted by Orlop at 8:35 PM on April 27, 2017

posted by scrubjay at 9:09 PM on April 27, 2017

What a perfect articulation: you think you know, but you have no idea. Sometimes I avoid stories like this because they hit too close to home, but I'm glad I chose to read this in its entirety. I was so relieved for them at the end, that Keri had not carried Eva all those months only to be unable to donate any of her organs.
posted by hurdy gurdy girl at 9:21 PM on April 27, 2017

I read the first story they wrote and I was wondering what had happened. I'd say they are extraordinary people but I know there are a lot of people this generous out there that you never hear about. Sometimes it's very good to be reminded of people's enormous capacity for goodness though.
posted by fshgrl at 9:54 PM on April 27, 2017 [1 favorite]

This takes sacrifice to a whole new level.
posted by The Underpants Monster at 10:28 PM on April 27, 2017

I ugly-cried when I found out Eva had died in utero. I ugly cried even harder when they got the call that her eyes had a recipient.
posted by KathrynT at 11:27 PM on April 27, 2017 [5 favorites]

Oh, crap. I opened the article and looked at the first picture and instantly decided that no way in hell I'm reading that at work.

But thanks for sharing what looks to be a thought-provoking link. I'll look at it tonight when the kids are asleep.
posted by Harald74 at 11:56 PM on April 27, 2017 [1 favorite]

Heading into a new job prospect, but thanks for posting. My ex-wife and I went through a similar experience and it's hard to convey just how painful and emotionally devastating it can be.
posted by saulgoodman at 5:48 AM on April 28, 2017 [1 favorite]

eternal rest grant unto her, o lord, and let perpetual light shine upon her and her family.
posted by quadrilaterals at 5:50 AM on April 28, 2017 [4 favorites]

Despite all the comments that warned me otherwise, I read this at work. Thank goodness it's a quiet day, cuz getting through that without crying would be pretty tough. They did their best with some incredibly rough circumstances, and it's always inspiring to see people do that, even if they don't have the silver lining to cling to afterward (but it sure does make it a more tear-inducing story).
posted by ldthomps at 8:13 AM on April 28, 2017

Holy shit. That was much harder than I thought it would be. I light a candle every year for a sweet boy who didn't make it. I thought I would be able to handle whatever this story had to give, but holy shit. I was wrong.

These people are -- I'm not sure there are words. Selfless. Saints. I don't know how to describe what sacrifices they made. From an atheist - bless them.
posted by Sophie1 at 1:25 PM on April 28, 2017

posted by Coaticass at 4:11 PM on April 28, 2017 [1 favorite]

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