But something about the reporting of it makes me recoil
Like how it's being called "Shane's adventures" along with a copy of the ultrasound showing just how little skull he has? Me too.
I had kind of the same reaction as the OP, though it strikes me that this is more of a "figure out why I may be an asshole" topic than "figure out why other people may be assholes." Really the only appropriate response is "I'm sorry about that, do whatever feels meaningful."
Halford, in skimming the bucket list you may have missed the fact that one item was a concert, and I'm sure they took videos with their phone while attending, which I'm sure you'll agree makes them history's greatest monsters.
2 is roughly how I feel. (Halford is wise. Not ready to give up pretzels yet, though.)
It's the coverage. Grief is what it is, but it doesn't seem any more appropriate to me to have a perky story about this than it is to have a perky story about a couple in the same position who are huddled in a dark room weeping. It's how they're coping with a personal tragedy, not an uplifting human interest story.
Very close friends recently went through extremely similar if not identical diagnosis and fully support their approach of late term abortion & getting back on the procreation bandwagon. Agree with OP and 1 with regard to recoil, mostly about the promotional aspect. Cannot conceive of agreeing to a news story about this.
We did the dark-room-weeping thing. It didn't work very well.
I doubt there's anything that would have worked better. And I'm very sorry for your loss.
Time seemed to work. It was years ago.
My immediate reaction was 1, followed a split second later by 2. Sort of like how my first thought at 7 was that it would be inappropriate to pimp a friend's book, but then that it might actually be appropriate to pimp a friend's book in case it might be a comfort. Deepest condolences, Gerald.
I know I've bitched about this before, maybe even at you, heebs, but I really wish people would stop using the term "pro-life". The implicit framing gets my back up. (I fully acknowledge that maybe I just need to get over it. I wrote to JMM about his use of it once, and his reply was essentially, "that's just the accepted wording.")
My acquaintances who were in that position decided to go the have-lots-of-kinky-sex-in-an-already-open-relationship route. They seem to be doing okay, but I'm not so close to them that I can say for sure whether that was the best option. They have another child too, though, so I'm sure that is a contributing factor in mustering the strength to go on. Life is just too much pain sometimes.
Oh yeah, now that you mention it, you have. Fortunately, my memory for such things is like a sieve.
12: At some point the blog will consist of nothing but endlessly repeated conversations, to the point where we'll just use the comment numbers in the URL.
Jean-Marc Mormeck? Juan Manuel Marquez? A different pugilist?
Josh Marshall from Talking Points Memo.
I always get TMP and TMZ mixed up.
Ah! I didn't realize we were on such familiar terms with him.
I fully acknowledge that maybe I just need to get over it.
While I sympathize, I think this is right -- I think pro-life and pro-choice are both pretty thoroughly semantically bleached by now, and just mean anti and pro abortion rights.
Jean-Marc Mormeck? Juan Manuel Marquez?
Jo Mama.
My acquaintances who were in that position decided to go the have-lots-of-kinky-sex-in-an-already-open-relationship route.
Did they take pictures and call it "name of fetus's adventures"?
Anyway, back to the topic at hand, it seems to me the best reasoning for having the article done would be something along the lines of "maybe people will think we're weird, but it could help remove a little bit of the stigma from situations like this". Although if they are anti-choice, perhaps that would be unlikely.
I believe I've mentioned before that I have a visceral negative reaction to those articles about children with disabilities or serious medical conditions where the Xtian parents are falling all over themselves to say what a wonderful gift from God the child is, and how they couldn't possibly feel more blessed. If that's true, then good for them, but it often sounds a bit forced. Would it be so hard for them to say, and for the rest of us to accept: "This isn't what we wished for, but we'll make the best of it, and we treasure our child no matter what."
18: Maybe semantically bleached, but I still think that changing the implicit framing could change the discourse more generally, and that pro-choice people should make the effort to do so. (/preaching)
23: I should have clarified: This was after their baby was stillborn.
My acquaintances who were in that position decided to go the have-lots-of-kinky-sex-in-an-already-open-relationship route.
Huh, that one strongly hits the "morally repugnant" nerve. And there I can't really decide if it's a "figure out why I'm an asshole" issue or not. I guess it is, whatever works for them, but, gross?
This reminds me of this piece my cousin linked on Facebook. Apparently the Heritage Foundation has a Vox-esque website called The Daily Signal. Anyway, the point is that pro-life principles dictate that people should make public announcements that they are pregnant as soon as possible, so that they can then react to a miscarriage the same way they would react to a child's death.
27 before seeing 26, which for some reason makes it seem less repugnant to me (more like drowning sorrows in booze or something). I should probably shut up.
I dunno, I mean, I've heard some complaints about the guy coming on a little strong, but that might be people's own projections. The woman seems to be doing way, way better, but as I said, we're kinda arms-length friends, for a variety of reasons. But not 'cause of the sex.
28: That's not even going to place in a "Most Repugnant Thing That Anti-Choice People Advocate" contest.
24.2: I think it's probably not false in all cases. I get to be a parent to my favorite children in the world and I love every bit of them so deeply and don't feel like I'm just making the best of the difficulties they've had that made them need me in the first place. I feel secular-atheist blessed to have them, certainly, though I also wish they hadn't needed me. That doesn't feel far off what bothers you.
what a wonderful gift from God the child is
Yeah, I mean, deal with tragedy in whatever way works for you, of course. But still, that sentiment always makes me think that if this is the kind of blessing your god hands out, you should really go god-shopping for a better option.
Further to 32, I do think that people who think their adoptions, especially of older kids, were meant to be are super fucking creepy fans of a torture god, so basically comity with 33.
Agree with 2 et al, but if we're talking about what's off-putting about it, I assume it's that the act of presenting these things as the experiences of someone who is not experiencing them at all and the memories of someone who will never remember them touches on that kind of parenting that's about the parent getting to be a parent rather than a child being a person.* But again, horrible situation; do what gets you through it.
*Ok well that came out really clear. Example to illustrate what the hell I'm talking about: a friend posted an article about a little girl who wanted to dress in pants and hated frilly things. A friend of that friend was like "Hell no, my little girl is going to be a PRINCESS because that's my dream of motherhood." That kind of parenting.
I had an instructor once who had two children, the younger of whom had Down Syndrome, and she shared with me her frustration that her mother (the kids' grandmother) was always pointing out some developmental milestone that the kid achieved, as if to undo his condition by force of positive thinking. And she had to explain to her mom, again and again, that no, it's not a sign of him magically getting better, it's a normal milestone for babies with DS. So, with 32, obviously you should love your kids fully and completely, and having them is better than not having them, even if their various challenges may frustrate you, I just object to the whole fake-positivity part of it, the "this just shows how much God loves us" aspect that 33 problematizes.
I believe I've mentioned before that I have a visceral negative reaction to those articles about children with disabilities or serious medical conditions where the Xtian parents are falling all over themselves to say what a wonderful gift from God the child is, and how they couldn't possibly feel more blessed.
I've got a super Xtian friend from grad school whose kid has severe disabilities, and it's actually been amazing how...dignified? they've been about the whole thing. They're doing a bunch of fund-raising and blogging, but they're open about feeling depressed or jealous but also in love with their kid. It makes it really easy to root for him and donate money.
38.2: Good? I guess? Obvs. I realize there are lots of different perspectives on these topics within Christianity.
24.2, 32: I don't doubt that there's (often) an element of saying it so you'll believe it, but I also suspect it's usually true to a great extent. Among other things, don't forget that parent-child attachment has a big chemical component - it's not as if giving birth to a severely disabled baby disables any of those visceral feelings. And then, on top of that, if you spend a lot of effort nurturing something, you'll also develop a strong attachment. So the parent in question, even if s/he is clear-eyed about the bad parts of the situation, also feels many (most? all?) of the same irrational feelings of love/attachment/gratefulness that a parent of a healthy child does.
And on top of all that, the vocabulary these people have to express themselves is all wrapped up in these Christian platitudes. Hell, AB & I used to refer to our newborns as "miracle babies" even though there was nothing remotely miraculous about them or their origins*, but it's hard to express how incredible the whole thing feels.
*yep, just rechecked the calendar, I was around at the relevant times
I don't doubt that there's (often) an element of saying it so you'll believe it, but I also suspect it's usually true to a great extent.
The chapter in Far From The Tree about kids with super severe disabilities painted a picture of parents who were so under-supported and over-stressed that such platitudes would have been mostly a fig leaf.
37: In my experience, grandparents are like that regardless.
Yeah, I mean, also obviously, there needs to be more and better support for families of kids with disabilities, or who go through some other trauma or whatever. That should be the bottom line.
To step back a moment, I'm sure part of the reason this causes me much anxiety at all is that we're all kind of waiting for the other shoe to drop with my niece, who was exposed to drugs & alcohol in the womb, and who, as a result, was super premature. Other than being tiny, she seems to be doing great, but of course there could be stuff down the road that just hasn't materialized yet. And I will love her no matter what, and I'm overjoyed for her and my sister both getting to be with each other.
A girl I grew up with had some fairly moderate learning disabilities, and got plenty of support and encouragement from her family. I feel like we all treated her the same as the rest of us, but she was way behind in terms of academics. It was irritating to learn that she'd completed a massage therapy course, but the State Board of Massage Therapy or whoever, was refusing to grant her a license, because she didn't have a traditional HS diploma or GED, having gone through some other type of program that didn't award those things. So again, not as worried about the affective stuff as the instrumental side of it, where better public policy could really make a huge difference in people's lives.
I think too that for many of these people, the cheerful platitudes are part of what help them make it through the day. Saying their child is a miracle/gift from God reminds them that this is something they believe, which makes it a bit easier for them to wipe the drool for the millionth time (or whatever).
I'm not suggesting it's the healthiest coping mechanism, but I've seen worse. Of course the problem is when it falls apart, or cracks appear in the foundation - then one has to hope they have sensible people around to help them out, or the fall is that much harder.
How old is she now, Nat, 2-ish? There are good early intervention people, though presumably she'd be getting that by now if she needs it. If she doesn't have asthma, that's a good sign. FASD-type learning disabilities usually make themselves clear by age 8 or so at the latest, but there are signs before then if you know what to look for. Education and resources are better these days than they used to be. I know a lot of people close to you involved in that sort of work, not as many where your sister is, but I'd be glad to help her make connections if there's ever a need.
47: Yeah, she'll be two in a month or so. She had a social worker and an occupational therapist, and she graduated from occupational therapy. She seems a little slow on the talking front, but that's not really so concerning at her actual age. My sister, though, has quit her job and is moving back east to live with my parents for awhile. Don't even get me started on how much support I don't receive from parents because I'm the oldest and expected to be perfect. Probably I am just being a worry wart.
Don't even get me started on how much support I don't receive from parents because I'm the oldest and expected to be perfect.
Oh, I know how that works. And slow speech is often normal after an early birth, getting out of OT is a big deal. MOFAS and similar organizations are all over the place in MN because that state is adoption central. And I'm not thrilled about prenatal exposure or anything, but it's often made out to be a bigger deal than it is, I think. Cigarettes do more damage than a lot of "worse" drugs.
Oldest children are obviously the best.
Both times, we had a weekend to spend between diagnosis of hydrocephalus and termination. You want to make the most of it, because that's the rest of the time you'll get with that son. But I couldn't think of much that could matter to an in utero kid with little brain left. The only things I came up with were eating sugary food and getting buzzed. I thought those sensations might be transmitted in a meaningful way to them.
You can find a few bloggers who will say that if you have a choice in advance, don't choose to have a severely disabled kid. I find them very comforting.
The framing is obnoxious. I don't care how they manage to handle their grief, and if taking trips on their son's behalf makes them feel better, that's great. Do whatever you need to to get through this.
But there's definitely a whiff of "well, we could have had an abortion, but we took him to the Statue of Liberty instead! yay lemons to lemonade!" in the coverage which angers me to the point of wanting to say needlessly cruel things. You are not morally superior to anyone who chose to terminate and grieve privately.
33, 34: We almost certainly told our kids (when they were growing up) that "it was meant to be" that the agency placed them with us. In fact, once or twice I've told ms bill that "we were meant for each other." I've been revealed as a predestinationist monster.
53: Nah, only when people bring God into it. As in anything else, you make whatever narrative works for you. But people will go on and on about how God always meant for this to be my son and brought him to me so I could save his life and, well, maybe God shouldn't have put him through all the other stuff first because there would have been easier ways. Lee would definitely use more generic meant-to-be language like that, but not get overblown about it. (And sorry that I'm being mean and judgmental; I promise I wouldn't be snarky if I heard you just say that.)
Renaming the kid Theo C. D. is probably a bit much.
Mostly just to "play devils advocate" a bit (aka procrastinate BETTER by provoking argument, aka "troll"), I do think that there's something specifically connected to Christianity about raising a severely disabled child that will come up if you are already Christian.
That is, many of the obligations that you should theoretically have as a committed Christian -- namely (1) a commitment to the radical equality of persons regardless of condition, (2) the overcoming of problems through slow, patient, loving care (3) patient service to others for no obvious reward and (4) a call to be tested through difficult conditions while relinquishing control over those conditions to God -- are present into super-obvious, immediate, tangible, no-doubt-about-it ways when you are parenting a seriously disabled child. (Note: I am totally not saying you need to be a Christian to effectively parent a disabled child, or to have any of the aforementioned qualities or commitments. Just that, if you are, there's an immediate resonance with "let's put the best part of these beliefs into practice, and here's an opportunity to do so").
Problem: treating the disability and/or child as some sort of theological / spiritual aid. A scourge is just an inanimate object, a child is a while separate person from you.
56: I can see how if you're Christian—and not just the typical soi-disant Christian, but that's trolling for another time—it might seem that way, but you can simply eliminate "while relinquishing control over those conditions to God" and fulfill the same obligations.
No disagreement at all with 59. I'm just pointing out a reason why the "God's plan was for me to have this disabled kid" thing might resonate a bit more for Christians beyond just wishful thinking and/or distasteful objectifying like that pointed out in 57.
24, 33. I guess that sort of Christian never reads the Book of Job.
Bonus points to Halford for explicitly being devil's advocate for Christianity.
A scourge is just an inanimate object, a child is a whole separate person from you.
Kids have a way of feeling like a scourge.
54: This "meant to be" issue came up when we told our daughter (the elder child) of when we "chose" her. The agency sent us a picture of her (age three months) mailed from Korea and a "medical history" of maybe three sentences in broken English. We had 24 hours to say "yes, we'll take her" or "no, we'll pass." I was on board in, like, 10 seconds and it was not the most rational decision in the world. Similar decison-making by ms bill. We did parse every word of the damn "medical history" to try to guess what we would be getting ourselves into, but I was all in before that. Same process with our son a couple of years later.
Inevitable questions: "Would you have taken me if I was ugly?" "Why did you take [Brother]? He's hideous!" [hahaha] "What if I had been deformed/stupid/bad?" and on and on. To which we initially gave careful, well-thought-out answers that over the years boiled down to: "As soon as we knew about you, we loved you. Always have, always will. You're ours. It was meant to be. Now go clean your room/rake the yard/ leave us in peace." Which begs plenty more questions (repeated multiple times by my kids), but sums it up for me. Each child has had her/his share of problems but so would have birth children (maybe different problems).
Thinking about it, I pretty frequently express to my kid how tremendously lucky I feel that I just plain old like and enjoy him so much. He's just a really congenial guy to me. Same for his father. Also, good thing he's so odd as means he fits in well with the rest of us.
I alternate between telling my children that they're beautiful and perfect, and that I'm going to have them killed (mostly if they don't stop doing something particular). I figure the whipsaw effect keeps them on their toes.
The only two close friends I've had who were libertarians were raised in the style of Christianity described in 56.2, and required the intervention of Ayn Rand to achieve the normal level of selfishness necessary to function.
The agency sent us a picture of her (age three months) mailed from Korea and a "medical history" of maybe three sentences in broken English.
I just saw an article about Korean adoption recently (I'm only about halfway through it, but it looks interesting, and work passing along).
66: Yeah, we have some of that talk. They know we had open beds and we've told them what the workers were able to tell us about them that made us say yes. Haven't really delved into how if they'd had Mara's and Selah's ages right they wouldn't have asked us in the first place! Divine providence, I suppose. And good workers, one of whom is really hoping she has an answer to Nia's "When am I getting adopted?" by tomorrow evening's visit.
And good workers, one of whom is really hoping she has an answer to Nia's "When am I getting adopted?" by tomorrow evening's visit.
Woot - fingers crossed!
72: Yeah, wow, good luck, if not tomorrow then in the near future!
Oh, we're just waiting on a date that works for all the lawyers now. All the paperwork is filed and all that, and the girls had had the same lawyer just as a coincidence when they were in care and she was assigned to them as their adoption lawyer, so she didn't have to do anything extra to review their cases or decide we were the appropriate placement. So far everything has been very easy, just slow. But it should happen in October, maybe even September, definitely soon.
Selah and Nia will get adopted on the same day back-to-back (by Lee and me respectively) and we'll file for joint custody on all three girls immediately. And then we'll close as a foster home unless one of their siblings needs us, which is the part I'm very conflicted about. Our caseworker was totally buttering me up last night as I talked to a class of prospective foster parents about our experiences because they don't want to lose us.
You haven't asked for advice on this, but when you say conflicted, you mean that you're considering not closing as a foster home and maybe taking additional kids? I would not do that, in your shoes. Maybe, several years down the road, when your three are more settled and everything's running smoothly for you. But not in the near future.
Yes, it's about putting our home on hold (so they don't call us) versus closing. But in practice it's not going to make a difference; we could reopen quickly within say five years if we ever had reason to do so. And we're not going to be taking any more children now regardless (except maybe Selah's sister, but I mostly hope not) and so it really doesn't matter. It's just being officially done that feels weird. But that frees me up to run everything at the school and be that parent instead of the official foster parent.
Anyway, the point is that pro-life principles dictate that people should make public announcements that they are pregnant as soon as possible, so that they can then react to a miscarriage the same way they would react to a child's death.
Yes, this is a thing. Also: posting pictures of their stillborn children on Facebook. I cannot even imagine how I would react if it were my kid, but it's pretty disturbing to see.