Avery SMAvery!

May 1, 2012 6:10 AM

Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do? My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality.

Avery has Type 1 Spinal Muscular Atrophy, the number one genetic killer of infants and toddlers under the age of 2.

Despite a 2008 recommendation by the American College of Gynecologists and Obstetricians, SMA is not routinely offered as part of the genetic screening process for women who choose genetic screening, beating out cystic fibrosis which takes the second spot. Avery and her parents hope to change this, and along the way, live life to the fullest and each and every day.

posted by zizzle (133 comments total)

Nothing to say other than this makes me very, very tearful indeed.
posted by GallonOfAlan at 6:14 AM on May 1, 2012

.
posted by leotrotsky at 6:16 AM on May 1, 2012

SMA is not routinely offered as part of the genetic screening process for women who choose genetic screening, beating out cystic fibrosis which takes the second spot.

So are we talking individual ob-gyns here who make these choices?
posted by smackfu at 6:28 AM on May 1, 2012

What a cutie. May her family be blessed.
posted by ThePinkSuperhero at 6:35 AM on May 1, 2012

I'm sorry; the use of first-person point of view to give a voice to someone who cannot speak for themselves seems unbearably presumptuous to me. It kind of reminds me of Doonesbury's pulled Silent Scream satire: Let's call him "Timmy". While his main preoccupation at this point is cell division, in most respects he's as human as you and I.
posted by The Confessor at 6:35 AM on May 1, 2012 [64 favorites]

For anyone who doesn't want to read a blog about a baby with a fatal disease, please note this:

a blood test is available that lets parents know if they are carriers for SMA. In order to keep costs down, it is not offered as a recommended test. ALL or a portion of the test could be paid by insurance, depending on your state or insurance provider.

(my summary from this page of their blog)
posted by dubold at 6:36 AM on May 1, 2012 [10 favorites]

I'm agnostic. I don't know if there is a god. But if there is a god I really hate that motherfucker. There are no religious explenations for crap like this that don't make me want to punch the explainer in the face.

Hey God, where you at? I'll take you on, I know you'll win but I won't die worshiping an evil tyrant.

"God is just bigger so you don't understand his way."

I understand enough. If his way involves making people watch their children die a slow death even as they get their first tastes of life, doesn't hold up to the god of compassion people claim exists. Sounds like a God of torture.

Carry your cross.

Yeah.

Sorry child death makes me irrational. What are we supposed to say?

This is just...not ok. I hope we can cure this one day. Soon. Maybe even within the next year? I was reading about how child leukemia research is progressing really well and I think about an aqcuaintance who died in his 20's living with that over his head. I hope that before he died he got to hear they might be a cure for others. But yet, too late for him. Yeah. If there is a God, heaven better be motherfucking awesome and I want a damn good explenation for this shithole.
posted by xarnop at 6:36 AM on May 1, 2012 [31 favorites]

the use of first-person point of view to give a voice to someone who cannot speak for themselves seems unbearably presumptuous to me.

I get that, and understand where you're coming from. Part of the tragedy, for me, is that Avery probably won't make it to an age where her thoughts are that developed. Presenting her as a minature grownup seems kinda grim.

Still, it's her parents' choice as to how they want to portray this situation, just as it was their choice to bring her to term, and indeed to publicise her illness in this way. Just because it's not the route I would have gone doesn't make it the wrong decision.
posted by dubold at 6:39 AM on May 1, 2012 [1 favorite]

I have no words, I can't read this.
posted by odinsdream at 6:42 AM on May 1, 2012 [2 favorites]

"I'm sorry; the use of first-person point of view to give a voice to someone who cannot speak for themselves seems unbearably presumptuous to me."

Yes it wouldn't have been my word choice-- however I also think if I was dealing with this I would barely be able to get through the day without sobbing hysterically, meanwhile with a little being that needs you to feel love and life and security for the moments they ARE alive-- and pretty much, whatever she needs to do to cope that doesn't actively harm others is fine by me.

If imagining her child has the voice that may never actually be spoken gives her comfort in her journey, then I hope it helps.
posted by xarnop at 6:42 AM on May 1, 2012 [12 favorites]

I understand that this is for a good cause (spreading awareness about SMA), and I know that I am imposing my own preconceptions about how parents in their situation should act, but something about the content and overall layout of the top link is deeply unsettling to me.

Maybe it's all of the Facebook "thumbs up" icons or the enthusiastic pleas for readers to click "like," or maybe there are just one too many pictures of the grinning parents posing with poor Avery like she were a pet. I don't know. There has to be an effective way of spreading information like this without seeming so... light.
posted by Kevtaro at 6:42 AM on May 1, 2012 [5 favorites]

Damn. I wish her as many happy days as she can get.
posted by roomthreeseventeen at 6:46 AM on May 1, 2012

Sorry, guys. I screwed up the post a bit --- cystic fibrosis, which is routinely tested for as part of genetic screening for women who choose it is the second genetic killer of infants and toddlers. SMA is the first.

I thought I had proofread better. It's hard to read a computer screen through tears.
posted by zizzle at 6:48 AM on May 1, 2012

There has to be an effective way of spreading information like this without seeming so... light.

what is this i don't even
posted by odinsdream at 6:49 AM on May 1, 2012

The angle that made this blog go viral is the "bucket list" Avery's father is writing for her. Whenever they manage to fulfill something on the list, it's documented on the blog. I read it a few days ago - one of items on the list was "eat a Blow Pop" so they have a picture of Avery tasting a Blow Pop. And so on.

CNN: Texas couple pen a 'bucket list' for their baby with fatal illness

Mike and Laura Canahuati's blog about their nearly 6-month-old daughter, who is expected to die by age 2 because of a genetic disorder, began as an efficient way to keep family and close friends in touch about baby Avery's health.

But when Mike Canahuati came upon the idea of writing a "bucket list" for his infant child -- a list of things to do before death normally drafted for adults -- his blog went viral, now with more than 1 million page views.

His imagined "bucket list" -- written as though Avery will make it past age 2 and experience life's milestones as a healthy girl -- is so sensitively penned that many of his readers are convinced that it's mom, not dad, typing the entries, said 31-year-old Mike Canahuati, of Bellaire, Texas, near Houston.

"A lot of people when they post on there, they say 'you and your husband.' They obviously assume Laura is writing it," dad said.
posted by flex at 6:50 AM on May 1, 2012 [2 favorites]

Also, I can't object to her parents' choice to tell her story in the voice they imagine for her. She will likely lose the voice she has to SMA after losing her ability to control her arms.....I can't imagine not hearing my baby's voice any more, and I think this is part of how they are coping with Avery's reality.

And I don't think it's bad. Or presumptuous.
posted by zizzle at 6:52 AM on May 1, 2012

OP - Avery and her parents hope to change this, and along the way, live life to the fullest and each and every day.

Site - "Avery passed away yesterday sometime around 3pm due to pulmonary complications related to SMA."

Well, shit.

.
posted by anti social order at 7:13 AM on May 1, 2012 [2 favorites]

I'm hesitant to say anything even slightly negative too, and maybe its just the firstpersonness that's turning me off, but there's something squee about this that I can't stomach on top of the tragic nature of the situation. It's like the photo of a little boy dressed in military dress saluting his Dad's flag-draped coffin...on Facebook, with people urging others to "like" this. What on earth is to "like?"
posted by agregoli at 7:14 AM on May 1, 2012 [14 favorites]

.
posted by agregoli at 7:15 AM on May 1, 2012

Oh no :(
posted by ThePinkSuperhero at 7:17 AM on May 1, 2012

.
posted by zizzle at 7:18 AM on May 1, 2012

the use of first-person point of view to give a voice to someone who cannot speak for themselves seems unbearably presumptuous to me.

Yeah, taking time on the day of your daughter's death to pen a twee letter in her voice just seems completely fucking insane. But it's obviously helping the Canahuati family cope with an unbearable situation, and will doubtless help other sufferers in the future, so...
posted by jack_mo at 7:19 AM on May 1, 2012 [7 favorites]

Please name a sane way to deal with the death of a toddler that was born with a ticking doom clock
posted by spicynuts at 7:32 AM on May 1, 2012 [23 favorites]

Cry uncontrollably for several hours, and spend time with family and loved ones?

Point taken, though. There's absolutely no "normal" way to deal with such an awful situation as that. Most likely it was therapeutic for her father to do that all along, and he needed to do it for his own closure.
posted by ShutterBun at 7:40 AM on May 1, 2012

Exactly.
posted by spicynuts at 7:41 AM on May 1, 2012

I saw this making the rounds the other day and thought it was sad but didn't bother clicking through to the blog. Looking at the actual bucket list and seeing the items that never got crossed off has broken my heart: Go to the beach. Be potty trained. Meet Santa Claus. Go on a boat.

Sit up.

She never even got to be a toddler.
posted by Gator at 7:41 AM on May 1, 2012 [1 favorite]

Please name a sane way to deal with the death of a toddler that was born with a ticking doom clock

There isn't one, that's exactly what I was saying - if writing a blog in this style has helped the family cope, it doesn't matter much how unpleasant, inappropriate or odd it seems to outsiders.
posted by jack_mo at 7:45 AM on May 1, 2012 [2 favorites]

.

What would I do? Have my heart break in a million pieces and cherish every moment I have with her. Figure out a way to be with her 24/7, enjoy every breath, blink, moment of her existance and then collapse when she was gone.
posted by stormpooper at 8:19 AM on May 1, 2012

This breaks my heart. My cousin's daughter has SMA Type I, and she's a month away from her 2nd birthday.
posted by candyland at 8:19 AM on May 1, 2012

Her=him. There could be observations about gender norms in there but I imagine most everyone has a hard time with the actual writing on that site due to copious amounts of fluids in the eyes.

Thanks for clarifying that flex.
posted by xarnop at 8:51 AM on May 1, 2012

I can't even bring myself to look at the link right now. But I was angry about some of the posts here. Then I realized that having some abstract discussion about how the parents wrote the thing is perhaps some people's way of distancing yourself from the horror that is a baby dying.

Or maybe my being peeved at other posters is my way of deflecting thoughts about that same awful experience.
posted by NorthernLite at 9:15 AM on May 1, 2012 [3 favorites]

Um, Xarnop, hai. Sorry if this is derailing your thread but my homie's ears are burning and he insists on representing.

So, X-boy, do you have any idea what a medamn big deal it is to crank up a universe? You try picking the magic numbers next time. Make sure planetary orbits are stable and water is liquid and stars blow up enough to make heavy elements but not so often that all your crap keeps getting blown up. Been there, done that.

So I try and try and finally get this thing going in a pretty good direction, and now I've got to make a sieve to find you guys because do you realize just how many medamn particles are flying around in this thing and how few of them are doing the interesting things I built it for? So I finally find you yahoos about the time you started getting the idea to walk on two legs and things are looking real promising and you start inventing stuff like clothes and pottery and I'm just about to call my buds to let them know I'm onto something, and then you yahoos get the idea that I've got my finger stuck up everyone's butt running the whole thing like a puppeteer.

SAY WHAT THE? I mean really, dude, that's what computers are for. That's the carpentry and pottery talking. Look, that was some good stuff back in the day but FOR MY SAKE TAKE A LOOK AROUND MAN DOES THIS LOOK LIKE A POT OR A CHAIR? Do you have any fucking clue what it costs to rent time on a Gibson to run this thing?

"Every sparrow that falls?" Are you fucking kidding me? I didn't even know what sparrows were until I saw John James Audubon drawing one. They come well below the threshold of my interesting crap sieve.

I have tried to get through to you lot but this stupidity just keeps spreading. Finally I whispered the whole damn secret in Alan Turing's ear. Fat lot of good that did. So I drew Benoit Mandelbrot a whole fucking picture. And I made sure you had computers good enough to get the point across. I half-wrote Fractint. And the sad thing is if I did any more it would just convince you that I'm the invasive control freak prick you think I am.

About this death thing, let's set something straight here. Your whole world runs on death. You're here to complain about this shit because of trillions of beings, most of them not very interesting but all of them very eager, who came before you and died. You will die, and don't bother complaining about that. One day I'm going to get tired of shoveling whuffie at the Gibson and your whole universe will come to an end, and at the rate things are going I might not wait for your star to explode if you get my drift. And some things die fulfilled and pretty and some things die unfortunately, but if I started sticking my finger in everything it would just fuck things up. Trust me on this. I know a guy who tried that, and they're still trying to get the malware out of the operating system.

Oh, and about that heaven thing, let's just say that's in the same category as me and those sparrows, 'k?

--God

P.S. Good luck curing this crap. You guys are a lot better at stuff like that than I would be cuz you're more motivated. I'm still impressed that you managed to beat polio.

.
posted by localroger at 9:51 AM on May 1, 2012 [2 favorites]

I cannot believe how unbelievably offensive this thread is.

I could barely order my sandwich at lunch. Had to go back outside and cry a bit, compose, then try again. The taste of a tomato.

God. this thread. stepping away.
posted by odinsdream at 9:56 AM on May 1, 2012

.
posted by fullerine at 10:01 AM on May 1, 2012

I have so much respect for this. When our girls were born, I started a blog. They were quite premature, and we went through a whole lot of medical care and trauma early on. I considered making it public, to put it out there as a resource for people going through a similar situation.

I couldn't do it. Mainly I had privacy concerns for the girls, but I also didn't want to take the responsibility. How do you try to be the one who becomes a face for a horribly difficult situation involving children? What if you say things that don't ring true for other people, or mislead people in some way with respect to their own situation?

I know exactly what it's like to write a blog entry of the form "Avery Lynn Canahuati 11/11/11 - 04/30/12". To do it in front of thousands of people, in the service of a noble goal like raising research money... I salute this family.
posted by gurple at 10:08 AM on May 1, 2012 [9 favorites]

This thread is making me sad.

I was hoping this thread would talk about Avery and all the things her parents arranged to do with her so they could have awesome memories before she died. I was hoping it would talk about genetic testing and maybe someone would chime in with another genetic disorder not talked about much and raise awareness. I was hoping it would serve the purpose of Avery's blog and spread awareness of SMA.

I never imagined anyone would find the way the blog was written to be creepy or wrong or grotesque and have that be so much of the focus of something so unfair and terrible.

I also, like Avery's parents, thought she had more time, even with SMA. I never imagined her father would post about her death the day I shared her blog with Metafilter. And I know once threads are posted, there's no telling which direction they will trend. But I never imagined this one.

I'm so sad right now and would very much like to see my kids.
posted by zizzle at 10:13 AM on May 1, 2012 [3 favorites]

Everyone deals with death in a different way. Everyone deals with impending death in a different way.

If it helps the family cope, if it's therapeutic, even if it's "not the way [we] would have done it," I fail to see why it's bad. Why not take a photo where everyone is smiling? How is "posing with [a child] like a pet" different from every other infant photo taken by every other parent?

For what it's worth, I would rather have a happy picture to remember a lost child by. Not one in a hospital, not one where there are tears of sadness. Who's to say that the family did not cry uncontrollably, or did not try to spend every waking moment cherishing every breath? Just because the blog is the most-visible thing does not mean it's the only thing.

I'm happy that the family could spend some time with Avery before she passed. I'm glad they have some cherished memories from accomplishing things on her bucket list, where for brief moments they could feel like a happy family.

I wish them the best as they move forward and heal from the tragedy; it's certainly made me appreciate what I have in my life.
posted by CancerMan at 10:20 AM on May 1, 2012 [2 favorites]

. for Avery.

I hope her parents find some comfort knowing they gave her the best experience they could while she was alive.
posted by Salmonberry at 10:21 AM on May 1, 2012 [1 favorite]

I find the blog creepy and grotesque. That doesn't mean that the parents shouldn't have done it, but neither does it make me a bad person for finding it creepy and grotesque. Nobody gets to dictate how a thread will go. I mean, what do you want us to say? It's shitty when babies die? Do you think anyone disagrees with that? It's shitty that this baby died. It's horrific that her parents will have to suffer FOREVER, though one hopes that the pain might lessen over time. That does not negate that fact that the way they chose to deal with her situation gives a lot of people the howling fantods.

(Especially, I think, because while the presentation is in the first person, this is in no way about the baby. The baby doesn't know from a blow-pop or a baseball game. It creeps me right the fuck out that they're fabricating some kind of adolescence their child isn't going to have while using their dying [now deceased] infant as a prop. Brrrrrrrrrr.)
posted by tzikeh at 10:23 AM on May 1, 2012 [12 favorites]

Dear god, suck it.

Looking at the actual bucket list and seeing the items that never got crossed off has broken my heart:

Just hearing there was a "bucket list" broke my heart because I have a 8 m.o. right now and I'm sure it has all the things she's learning to do or will get to do soon.
posted by mrgrimm at 10:30 AM on May 1, 2012

I find the blog creepy and grotesque. That doesn't mean that the parents shouldn't have done it, but neither does it make me a bad person for finding it creepy and grotesque. Nobody gets to dictate how a thread will go.

I don't find it creepy at all, but I agree with you in general.

However, in cases of death, babies, and often race, I find it helpful to be as sympathetic and sensitive as possible, realizing that some of the audience may have very intense feelings about the issue.

I personally don't think it's a great post because it's just too damn sad, there's not really that much to talk about, and the timing is terrible, but it's probably better to fiamo or ignore rather than trying to attack the parents. Justmy2c.

Arg, now I had to go and read the blog. Too, too much.
posted by mrgrimm at 10:37 AM on May 1, 2012

Hmm. Yeah, OK, people are creeped out, and that's a reaction, not a judgment. I get that. Let me try to put out there how I identify with this family.

We didn't know our daughter was going to die, way ahead of time, like these folks did. But we had serious health issues to deal with just about every day, and it really helped to be able to put them out on a blog, in broadcast mode, and not have to deal with questions from individuals constantly. And, additionally, these folks decided to turn their tragedy to a really noble purpose -- they gave themselves an obligation to put a lot of information out there, very personally.

Not everyone's a born writer. For a blog like this, you pick a voice, and you try for consistency of voice over a long time. These people chose to speak through the imagined voice of their daughter, because that was something they could do. They could put on that voice and talk about really tough things, maybe get some distance from it. A voice makes it easier to write about the tough stuff.
posted by gurple at 10:42 AM on May 1, 2012 [8 favorites]

Avery's death makes me sad, and I am frustrated at how helpless we all are in the face of such suffering.

As a Ph.D. of English Literature and Language who read the upthread comments, I could agree in abstract about the odd rhetorical position of the blog.

As a regular human being who trepidatiously followed the link to Avery's Bucket List, I immediately saw the use of the first-person as a convenient fiction to help spread awareness of SMA, a fiction that serves as a medium for the author (and his family) to communicate with millions of other people on the Internet.

Putting these two perspectives together, I want to say to those of you who can think of nothing better than to note the blog's "creepy" rhetorical posture that your reactions are much creepier than said posture and that you very well may have crossed the line from random Internet rhetorical analyst to self-absorbed Internet sociopath.

.

for your lost humanity and

.

for Avery. May she rest in peace.
posted by mistersquid at 11:01 AM on May 1, 2012 [8 favorites]

RIP Avery. I feel for her parents, it looks like they have something to help cope with the loss and figured out a way to build on Avery's life and hopefully help out others. I have two sets of couples friends that have lost a young child and it was tough on both marriages. It's a devastating loss no matter how you look at it.

I've never written about this online, but my wife and I were to have a second child (a boy) a few years ago. It took us a while to get pregnant, I was going through my tumor stuff, but after several years it finally happened. My wife didn't feel "right" from the start. Things were weird with her body but the first checkup looked ok. She was older than 40 so we did an amnio and genetic testing (we did on the first too). The thing is you have to wait a while to get that stuff done, like 12-16 weeks or so, then when you get a problem diagnosis, they need to double check it by re-running tests and that can add a couple weeks. I sort of knew what a genetic test entailed in the abstract when we first did one on our first child but I had no idea what it really meant when the shit hit the fan.

Fast forward to week 17 or 18 of the pregnancy, and we had a really bad diagnosis of an extra chromosome in a bad spot. It would cause all sorts of major issues with the brain, spine, and respiratory development. We spent a few days researching and figured at best, this child had six months to three years of a very difficult life to live given the condition. We had to make the toughest decision of our lives and we did it knowing it was the most humane thing to do, given that it would tear us up to go through with a pregnancy with this knowledge, the constant care and surgeries to follow as well as the toil on our marriage and on our first born. I don't regret it at all.

Here's the main thing though -- even though I'm a lifetime democrat and pro-choice I realized I bought into all the anti-abortion rhetoric over the years. I thought abortions were mostly there for irresponsible, unexpected, reluctant parents, that it was a last resort of the poor and uneducated, but given how genetic testing goes, it's a fairly late (second semester) abortion that is required and we were responsible people making our best educated guesses for the most humane but difficult decision, and we were right on the borderline of what was legal in many states.

So when you hear Alabama or Arkansas has pushed the abortion limit back to 20 weeks or requires a judge approval after 16 weeks, know that isn't due to irresponsible monster people that could have ended things weeks earlier if they were smarter about it, but it will affect people making these already terrible (but humane) decisions and after this whole ordeal I still think abortion should be legal, freely available, and very rarely done, but that we shouldn't let a bunch of old men determine what they feel like "late term" should be defined as to the point where it would hamper thoughtful couples making the toughest decision of their lives.
posted by mathowie at 11:03 AM on May 1, 2012 [163 favorites]

I want to say to those of you who can think of nothing better than to note the blog's "creepy" rhetorical posture that your reactions are much creepier than said posture and that you very well may have crossed the line from random Internet rhetorical analyst to self-absorbed Internet sociopath.

Oh, please. I don't think the "rhetorical posture" is creepy. I think the fact that they've created a bucket list for a five-month-old is creepy. When something gets an FPP, people react to it and post their reactions. But feel free to put that Ph.D in English Lit to good use as a diagnostician of mental disorders, especially when you have nothing but a single comment about a highly-charged post to go on.
posted by tzikeh at 11:07 AM on May 1, 2012 [9 favorites]

When my mom was diagnosed with cancer, I kept it a private thing. I told a handful of close friends (when they asked why I was being reclusive and less cheerful), eventually confided in my manager (because I was occasionally finding myself losing focus and thought I might have to take some time off), and donated more money to charities related to cancer. So I'm sorry if this sounds horrible, but it just seems somehow grotesque and narcissistic to me how the parents beg to have so much attention focused on their suffering. It seemed so strange and creepy to me that I even background-checked the donation site a little to make sure it was legitimate. (It appears to be.)

But I suppose everyone has their own way of dealing with tragedy, and even if I find the delivery off-putting, I really respect that they're trying to make a difference in a positive way for other people with SMA. So there's that.
posted by wolfdreams01 at 11:13 AM on May 1, 2012 [1 favorite]

I have an acquaintance whom I met through her blog (careful, autoplay-music) about her daughter's Twin-Twin Transfusion Syndrome. She's doing what I couldn't bring myself to do -- making her daughter's story public, so that people in similar situations can realize that they're not alone and see what things might be like for them as time goes on. She's made a really wonderful video about her pregnancy and her daughters' early days, to the same purpose.

Her blog helped me out greatly, since her early pregnancy was a lot like my wife's and her NICU time had a lot in common with ours.

I think it's quite uncharitable to assume that people who do this are doing it "for the attention". The act of blogging can be cathartic, certainly. But if someone's putting personal stuff of this nature out for the world to peruse, I can just about guarantee they're doing it for a reason they see as important.
posted by gurple at 11:23 AM on May 1, 2012 [3 favorites]

I can feel for the parents, share in a small way their grief and horror, understand how losing a child could blight your life and refrain from judging how people deal with pain. I can also, at the same time, have an emotional reaction to this blog that involves recoiling from the grotesquerie of displaying a sick and oblivious child in public for the sake of attention and sentiment. If that makes me a sociopath, then I suppose it does. But I hate being manipulated in such ways, and though I'm sure the parents' intentions were good ones, my response is still valid.

mathowie, so sorry for your loss.
posted by jokeefe at 11:32 AM on May 1, 2012 [4 favorites]

My older sister (who I never met) was born with SMA Type I (Werdnig-Hoffman's) and died right before her first birthday of respiratory failure. Neither of my parents ever had a clue they were recessive carriers, nor had they heard of the disease before my sister was diagnosed.

Because of the 25% chance of another affected pregnancy, my parents chose to use a sperm donor to create me. Still, I am going to have to get tested to see if I'm a carrier before I have children of my own. I have the good fortune of knowing how to avoid this particular tragedy, something that my parents didn't have.

I never had the chance to know my sister, nor have I ever lost a child myself, but I do know that losing my sister absolutely broke my parents' heart. Their marriage did not survive the loss. I've seen firsthand that losing a child can change a person's life; it's not necessarily something anyone ever gets over. Not to mention, this disease is particularly cruel in that at birth the child appears normal, and intelligence is preserved up until the end.

I endorse recommending this test with all my heart. I work with special needs kids now, and I hope to do so in my practice as a physician in the future, and this is partly due to my sister and the friends my parents made at Easter Seals, who also had children with challenges. These kids are wonderful, but their lives are hard. We as a community and healthcare as an entity should have a goal of working towards giving kids the best chance in life; that means from pre-natal onwards.

On another note, I also personally dislike the whole "first person" blog tactic, but the truth is that my opinion in this incidence is completely irrelevant. This family is doing what they have to do to cope, and while doing they're helping to raise awareness, which is a fantastic idea. I don't feel a need to criticize that, as it doesn't help anyone out.

Also for the record (since it came up), I am pro-choice. In this context, that means I respect the decision of a woman or of parents together to either choose to have a child with a severe disease, or to terminate the pregnancy. I think it is an extremely personal and individual decision, and I am personally appalled by recent Arizona legislation. I have seen families that have severely handicapped children who are the light of their lives; they love them, tend to them. I have seen others who never wished to have these children and the result is miserable. Those kids suffer, bounced around by state support with only the minimal hygiene and living conditions offered, and it's hard to watch. Having a child, period, is a huge responsibility, and those who aren't able or willing to give 100% should not be having them at all. That, of course, is my personal opinion.

My best wishes to this family. Right now care for genetic disorders really doesn't go past "supportive," but we are working towards great things in the future. :) One day.
posted by Eggbix at 11:33 AM on May 1, 2012 [12 favorites]

I can also, at the same time, have an emotional reaction to this blog that involves recoiling from the grotesquerie of displaying a sick and oblivious child in public for the sake of attention and sentiment. If that makes me a sociopath, then I suppose it does.

The fact that you (and I) had a visceral, emotional reaction to a human situation eliminates us from the pool of potential sociopaths, but you know, some people never let definitions of words or other kinds of facts stand in the way of treating themselves to a good ol' holier-than-thou moment.

Apparently "someone who reacts to a given situation in a way that I find upsetting or distasteful"=="sociopath."

In which case that means that I can, without hesitation, diagnose Avery's parents as sociopaths. Right, Mistersquid?
posted by tzikeh at 11:51 AM on May 1, 2012 [2 favorites]

I think a lot of healthy people would be more comfortable if people with special needs, and in particular disabled kids, never left the house. People are very viscerally disturbed by sickness and medical difficulty.

I have only the tiniest, briefest window into this effect, personally, in that our daughter had a feeding tube in her nose for several months. We would go out to a restaurant or to a cafe or whatever, and some people, even well-intentioned people, would look at us like we were dragging her away from her sickbed, like having her out in public was some kind of abuse.

That was just half a year of the visible part of a minor disability -- very small potatoes. I can't really imagine what it's like to try to live as normal a life as possible with a kid who's significantly, visibly disabled. Maybe stuff like what these folks did -- the public events with attention focused on Avery and the disease -- will help more people realize that disability and death are a normal part of life, not something that needs to be hidden away so that people can be less creeped out.
posted by gurple at 11:56 AM on May 1, 2012 [7 favorites]

wow. tzikeh, I mean this sincerely, and respect if you feel the answer is yes, but... is it necessary for you to take such a sensitive subject and go this route?

Do you REALLY think the pain you would feel in repressing your disdain for these people's coping mechanism is in equal amount than what they live with?

It really reminds me of one person saying, "I am in agony and I can't bear what I am experiencing" and another person saying, "You know, I really think your shirt is ugly. I just wanted to voice my opinion too, so we're both equals here"

Something is just, off.


I imagine this might be how you process something difficult to process in the world. If being insensitive is a necessary coping mechanism, than I really do respect that. It's hard to see others suffer in ways that alter their behavior.
posted by xarnop at 12:01 PM on May 1, 2012 [5 favorites]

I also suppor a better out than in approach, so I really don't care if people need to say whatever they want to say. So uh.. I guess I'm here doing that too? Cheers?
posted by xarnop at 12:02 PM on May 1, 2012

Do you REALLY think the pain you would feel in repressing your disdain for these people's coping mechanism is in equal amount than what they live with?

Both these things can be true: the parents are living with tremendous pain. They face losing a child (they have, now, lost their child). And they have paraded around this sick child like a puppet or a prop. I don't think their intentions were bad-- they've raised a lot of money for research. But I can be disturbed by their methods-- writing the blog in the first person, constructing the fiction of this poor sick child leaving letters for her parents, wanting to fulfill her "bucket list", and so on. Their pain and their need to express it doesn't give them the moral authority to invite public attention and then be entirely free from negative reactions to the way they have gone about it.
posted by jokeefe at 12:09 PM on May 1, 2012 [7 favorites]

I was part of a weird, horrible thing and ended up sharing a lot about it, on the internet and to various news sources. My hope was that it would help people think a little bit more about the issue and how they could help prevent it, or at the very least avoid contributing to it. The fact that I drew attention to it also drew criticism because somehow wanting attention for something is inherently bad, no matter how beneficial that attention might be to a greater cause.

If they're anything like me I imagine there are days when they'd rather do almost anything besides talk to someone about their child's fatal disorder, but they thought they could help someone and so they pushed through those moments and put themselves out there in public. Good for them.

For those saying that the bucket list is inappropriate because the baby doesn't know what's going on--every five-month-old is unaware. No offense to five-month-olds, but they don't know WTF is going on, where they are, or anything. Are we not supposed to take them anywhere, offer them solid foods they might enjoy, or take pictures of them to show to other people? Or is it only sick and disabled infants who aren't allowed out of the house?
posted by the young rope-rider at 12:13 PM on May 1, 2012 [4 favorites]

I can't really imagine what it's like to try to live as normal a life as possible with a kid who's significantly, visibly disabled. Maybe stuff like what these folks did -- the public events with attention focused on Avery and the disease -- will help more people realize that disability and death are a normal part of life

And not to belabour the point, but these people did much more than just go out in public or attend events to try to fund raise. They constructed this whole performance about the baby "checking off items" on her wishlist, and then wrote about it in a pretence of her own voice. I'm allowed to find this troubling. They grief does not exempt them from questions regarding their choice to portray their sick child in such a way.
posted by jokeefe at 12:13 PM on May 1, 2012 [3 favorites]

Their pain and their need to express it doesn't give them the moral authority to invite public attention and then be entirely free from negative reactions to the way they have gone about it.

And your revulsion and need to express it doesn't give you the moral authority to invite a public response and then be entirely free from negative reactions to the way you've reacted.

And my disappointment at your need to express your revulsion doesn't give me the... oh, hell, you get the idea.
posted by gurple at 12:14 PM on May 1, 2012 [4 favorites]

You're totally allowed to say whatever you want, just realize that they'll be seeing their referrer logs, be excited to be sharing their story on a site like metafilter, and then see what you said about them. You are in public as well.
posted by the young rope-rider at 12:16 PM on May 1, 2012 [4 favorites]

be excited to be sharing their story on a site like metafilter, and then see what you said about them.

And your point is?

I can't be the only person who has felt the same about their site, and I think the parents in this case have better things to do than read Metafilter. I can't help but wonder if this overweening sentimentality and desire for public performance of illness is a particularly American kind of cultural display, actually, prompted by the need to fundraise for medical costs. Let me say this once again: I feel for these parents; I can imagine their grief, as I'm a parent too; and I can still find the way they've gone about displaying their child to be distasteful. I don't have any problem with all the other blogs which share the details of a child's illness and which help by creating community with other parents. I have a specific problem with *this* blog, with it's supposedly narrated captions provided by the baby herself and the "bucket list" which the baby cannot comprehend or care about.
posted by jokeefe at 12:30 PM on May 1, 2012 [3 favorites]

The guys daughter just died and he wrote a letter "from her" to himself about how much she loves him and wants him to fight for the cure and stay positive because HE IS INSANE WITH GRIEF.

Yes, I absolutely give him an insanity defense on crappy and delusional writing style.

If you do not understand grief that makes you insane- and the fact that pretending your child has a persona that is writing through you on a blog is one of the BEST POSSIBLE and LEAST HARMFUL methods of dealing with this kind of insanity-- YOU ARE VERY LUCKY.

Not only is he using what you could refer to as sublimation to deal with complicated and unbearable grief, but he is using the force of his grief to focus on hope to prevent others from going through this.

What more do you want from parents watching their children die, would you like their hairstyles to be more suitable as well while they grieve unbearable grief? Do tell?

I think the obsession with critisizing every possible parenting decision parents make even while they attempt to nurture a dying child and face the death of that child, is possibly also an american thing?
posted by xarnop at 12:34 PM on May 1, 2012 [7 favorites]

Oh god - a friend of a friends 14 mo old just died from SMA. I would not wish this experience on my worst enemy. Horrifying.
posted by tristeza at 12:54 PM on May 1, 2012

Better tell them not to say anything about it on the Internet, because they might Do It Wrong and creep some people out.
posted by Gator at 12:58 PM on May 1, 2012 [2 favorites]

be excited to be sharing their story on a site like metafilter, and then see what you said about them.

And your point is?

I don't know, I guess I kinda thought people might think twice before doing things like emphasizing that their child was and never will be able to truly enjoy taking trips or eating candy.

Do whatever you want to do, though.
posted by the young rope-rider at 1:03 PM on May 1, 2012 [4 favorites]

For those saying that the bucket list is inappropriate because the baby doesn't know what's going on--every five-month-old is unaware.

Babies may not know "what's going on" by adult or little-kid standards, but babies are certainly aware. Why else do they cry? I'm not going back to the bucket list, but I'd be very surprised if Avery wasn't "aware" of most of the items (excepting any she slept through.)

How the hell do we know what babies enjoy? We don't know what babies are thinking. Research is pretty clearly going in the direction of determining a higher level of consciousness for younger babies than was previously thought.
posted by mrgrimm at 2:05 PM on May 1, 2012

I feel like they could have done the whole bucket list and everything else, but just used their own voice instead of the pretense of speaking as the 5 month old baby. I had seen this linked somewhere on facebook and specifically didn't investigate because it sounded kind of tacky and unfortunate. I have now read this whole thread and the links and feel like I have to add my respectful voice to the side that feels a little unsettled with how these people were speaking as their child.

I fully recognize that yes, they are clearly crazy with grief but they also are really putting themselves out there. It's not like they have some low key blog about their adventures with their sick and dying child, it looks like they are relentlessly promoting their blog and begging to go viral. I mean, yes, it worked! We are now all talking about this very awful and apparently common disease. But the fact of their grief and awfully sad situation doesn't mean that here on Metafilter we can't point out that the way it was done feels uncomfortable.
posted by smartypantz at 2:24 PM on May 1, 2012 [1 favorite]

Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months.

Well, other than possibly/probably the genetic part and the life expectancy, that's ALS.

I'm not someone who responds well to the artificial perspective thing either, but the lead bothers me.
posted by hoyland at 2:38 PM on May 1, 2012

The main reason I pointed out my credentials was not to give teeth to my rhetorical diagnosis of people's mental states (i.e. sociopathic) but as a kind of shorthand for "I've seen people, including myself, so overthink the syntactical, grammatical, and rhetorical circumstances of a speech act that the most obvious level of communication is all but ignored."

In this case, I think analyzing the blog's rhetorical position (ventriloquized infant, enumerated wishes, imagined first-person apostrophe, etc.), having a visceral reaction to that position, and then promoting that reaction as a primary concern are effects of reading taken to a bizarre extreme where tone, appropriateness, and rhetorical eloquence are weighted more than the simple homespun fact that these people are doing what they can to get the word out.

Pointing out how one's reaction is to be creeped out (besides itself being creepy) is to my mind similar to hearing someone say "I l-l-love you" and pointing out that she's stammering.
posted by mistersquid at 2:40 PM on May 1, 2012 [1 favorite]

You don't feel what I feel, therefore you are a sociopath.

Sigh.
posted by adamdschneider at 2:57 PM on May 1, 2012

I guess the discussion was in some way framed by the post, which is very much about the voice of the blog. The title of the page is a play on her name and the whole first paragraph is about her and uses her voice. That is why we are talking about it this way, not because we are sociopaths.

I googled SMA blogs and found a few interesting posts to round out the discussion. This one in particular talks about a longstanding community of support and also discusses the Avery bucket list "controversy".
posted by smartypantz at 3:07 PM on May 1, 2012

I've been fighting the urge to participate in this thread all day, but Mathowie's thoughtful comment upthread finally helped me put a finger on something. My wife and I had an experience similar to his, and ever since then these kind of threads creep me out too.

What I realized is that the use of first-person language, and the ascribing of complex, emotional sentiments to an infant is exactly what Pro-life America and other groups use on thousands of billboards across the country. "I've got my daddy's eyes!" "I can't wait to go fishing with Grandpa!" and the implied "Why do you want to murder me, I'm a bundle of joy!" Usually thoughts attributed to a twelve-week fetus, but accompanied by the picture of a cute eighteen month old.

I want to be very clear - I don't think these parents have some political agenda or hidden motive. This comment is more about me then them. But this language, and the underlying simplistic sentimentality about babies pushes exactly the same buttons as those pro-life billboards.

Just a thought.
posted by werkzeuger at 3:08 PM on May 1, 2012 [12 favorites]

CNN is reporting that little Avery has passed away....
posted by pearlybob at 3:16 PM on May 1, 2012

.
posted by pearlybob at 3:16 PM on May 1, 2012

On preview, I see that the news has already made it to the thread....So sad. I wish her parents strength....
posted by pearlybob at 3:19 PM on May 1, 2012

...it looks like they are relentlessly promoting their blog and begging to go viral.

Yes. It looks that way to me, too. It looks like they're trying to raise a million dollars for medical research. They're trying to have this horrible tragedy mean something. They're trying for their daughter's life to have made a real impact, despite its brevity and tragedy.

And it'll get worse, style-wise. Check the latest entry. They've got some "unpublished entries" saved up. Soon it'll be posthumous infant ventriloquism. That oughta send some of you folks right over the edge.

And you know what? I bet they reach that $1M. And you ever have a loved one whose life was saved or made less terrible because of the research that was done here or the publicity brought to the genetic testing issue, I hope you can stifle your squickiness and thank these parents profusely for putting out an enormous emotional effort to make this life and death mean something.
posted by gurple at 3:19 PM on May 1, 2012 [10 favorites]

I think it's more impressive that they're doing this despite not being notably fantastic writers.
posted by gurple at 3:23 PM on May 1, 2012

Okay, I can't bring myself to read through their entire blog archive, but I don't see a "donate" button anywhere on the site (someone correct me if I'm wrong). Since they're not begging for donations of any kind, as far as I can tell, and the sole purpose of the blog is to raise awareness and hopefully effect change in the way genetic testing for this horrific disease is done, what is the almighty problem with them "relentlessly promoting their blog and begging to go viral"?
posted by Gator at 3:26 PM on May 1, 2012 [2 favorites]

Gator, there's a donation link in the most recent entry: "Click here to donate to Dr. Kaspar's SMA Gene Therapy through Sophia's Cure which is a non-profit organization so all donations are tax deductible." Donations also appear to be accepted through a P.O. box.

Bear in mind that these parents started the blog 3 days after they got the diagnosis. It's not like they planned their strategy out for months.
posted by gurple at 3:31 PM on May 1, 2012

This one in particular talks about a longstanding community of support and also discusses the Avery bucket list "controversy".

The controversy seems to be more about pallitive care vs trying for a cure.
posted by the young rope-rider at 3:32 PM on May 1, 2012

this language, and the underlying simplistic sentimentality about babies pushes exactly the same buttons as those pro-life billboards.

All the talk of heaven and taking care of Uncle X, Nana Y, and Papa Z once she gets there pushes those same buttons.

I think that general disconnect with the parents' beliefs and POV + the relentless "Follow Me on Twitter!" cheeriness + the horror of the situation = much of the negative reaction here.

The social network links with the thumb up and the chirpy little Twitter bird are reaaaaly incongruous on a blog about a dying baby, imo. I think that lack of gravitas toward the death of a baby also confounds people's expectations.

Dunno. More power to them. Good luck, Canahuatis.
posted by mrgrimm at 3:42 PM on May 1, 2012

I think that general disconnect with the parents' beliefs and POV + the relentless "Follow Me on Twitter!" cheeriness + the horror of the situation = much of the negative reaction here.

I just read the entry that they wrote about Avery's g-tube (gastrostomy tube, which is inserted directly into the stomach for feeding) and compared it with my own blog entry that I wrote when my daughter received a nearly identical g-tube surgery (my entry was pitched for just friends and family reading my private blog).

Theirs: lots of details, some pictures that are difficult to look at and some that aren't, some humor and a cheery POV that seems at odds with the situation.

Mine: fewer details, some pictures that are difficult to look at and some that aren't, and a darkly humorous tone that seems at odds with the situation.

Well, thank goodness I decided to keep mine private or there. would. be. snark. Then again, I raised exactly $0 for medical research through my blog.
posted by gurple at 4:01 PM on May 1, 2012 [6 favorites]

Gator, there's a donation link in the most recent entry: "Click here to donate to Dr. Kaspar's SMA Gene Therapy through Sophia's Cure which is a non-profit organization so all donations are tax deductible." Donations also appear to be accepted through a P.O. box.

It's worth noting that on all the entries they say something like "If you want to give money directly to an organisation rather than mailing it to us, here's a link." which is something missing from 99% of all blogs meant to be raising awareness (i.e. money) for something. Noticing that actually made me feel a lot better about the whole thing, to be honest.
posted by hoyland at 4:32 PM on May 1, 2012 [1 favorite]

I think a lot of healthy people would be more comfortable if people with special needs, and in particular disabled kids, never left the house. People are very viscerally disturbed by sickness and medical difficulty.

Or is it only sick and disabled infants who aren't allowed out of the house?

Those are fascinating, wildly incorrect interpretations of anything that anyone has said, as far as I can tell. The only thing that even comes close to maybe falling to mininterpretation this way that I can find is the comment about "parading an ill child around" for attention. Note that it's not the fact that a disabled kid is in public, but that the parents are doing it for attention that the commenter takes issue with. Whether you agree that the attention is warranted (is it personal/is it for SMA awareness/is it both) has no bearing on choosing to ignore that fact and disingenuously imply that people here are saying that people with special needs shouldn't mingle with "the public."

Do you REALLY think the pain you would feel in repressing your disdain for these people's coping mechanism is in equal amount than what they live with?

1) I don't have any disdain for them. WHAT THEY DID CREEPS ME OUT. That is not a judgment call on them, or their ability to cope, and it does not indicate disdain. It means that I, personally, am creeped out. That reaction is not mutually exclusive to understanding that what they've done may be how they are best able to cope with the situation, or that their hearts are broken beyond imagining, or even having great sympathy for their pain.

2) I don't even remotely think "repressing" my pain is equal to the agony they're living with. However--again--one has nothing to do with the other. I'm not walking up to the grieving parents and telling them that how they handled their grief creeps me out. I'm sharing my thoughts about it in a comment thread at MetaFilter.

Big honking difference.
posted by tzikeh at 5:10 PM on May 1, 2012 [5 favorites]

tzikeh, why say anything at all, then?

What possible value are you adding to this thread? You're criticizing and judging the way a family is doing a good out of a tragic situation.

Near as I can tell, you bear no sympathy, no good will, and absolutely no empathetic understanding for what these people are going through. If you did, you'd have kept your mouth shut. You are doing nothing here but creating a divisive atmosphere, and it's far more attention-whoring than anything Avery's parents ever did, because at least Avery and her parents were trying to raise awareness about something that takes children from this planet far too early and trying to get people to do something about it.

I won't say what I think you're doing. I'm choosing to rise to a higher ground than you have chosen.
posted by zizzle at 5:19 PM on May 1, 2012 [3 favorites]

Near as I can tell, you bear no sympathy, no good will, and absolutely no empathetic understanding for what these people are going through.

Then you fail reading comprehension.
posted by tzikeh at 6:19 PM on May 1, 2012 [4 favorites]

And actually, I'm not done.

why say anything at all, then?

Because this is an FPP about something that creeps me out, and I'm allowed to share my opinion about how the subject of an FPP affects me. In fact, one might say that's the mission statement of MetaFilter.

You're criticizing and judging the way a family is doing a good out of a tragic situation.

No, I'm not doing either of those things. I refer you back to your lack of reading comprehension.

You are doing nothing here but creating a divisive atmosphere,

That's provably false.

I won't say what I think you're doing.

Except for the part where you straight-out said what think I'm doing -- creating a divisive atmosphere and being an attention whore. Unless you mean something else....

I'm choosing to rise to a higher ground than you have chosen.

That would be the high ground of Passive-Aggressive Self-Righteousness, then.

You, and a few other people, seem to be entirely unable to read "wow, I find what they've done to cope with their grief truly disturbing" and not see "I think these people are bad people doing a bad thing who should feel bad." I can't help that fact, but it doesn't mean that I should "keep my mouth shut" because omg dead baby no one comment unless it's about how awful it is that there is a dead baby.

There is more to this story to the tragedy of the loss of an infant, and more to it than drawing attention to SMA. There is how the parents went about it, and that is an equally valid topic of conversation. So no, I won't keep my mouth shut, thanks all the same.
posted by tzikeh at 6:32 PM on May 1, 2012 [9 favorites]

I have friends whose daughter was born at about 28 weeks, due to sudden and extreme complications in the pregnancy. Her parents keep a CaringBridge journal updated with the details of her care and growth (she's made it to what would have been 38 weeks!) in the hospital. It is written in the first person from the baby's perspective - her view from the crib and what's going on around her, and it is actually quite charming. It doesn't ascribe a lot of emotions to the baby, and it's not too twee. I find nothing creepy about it, and wouldn't even if it was much more emotional and teeth-achingly sweet. Because these are parents who are taking the time to update family and friends around the world about their still-very-ill child's status. If they wrote it from the point of view of the teddy bear in her crib, I still wouldn't care.

In the case of Avery's parents, KNOWING that she would die, too soon and too young, putting the story of their child out there, where anyone could come across it and declare it creepy or disturbing ... very brave on their part.

.
posted by Lulu's Pink Converse at 7:03 PM on May 1, 2012 [1 favorite]

JFC, the chutzpah of taking someone's response on their own blog to a world-destroying event that would be incomprehensible to anyone who hasn't experienced it, and not only making it a springboard to rave about your negative reaction, but to then vehemently defend it as somehow a right, or on a commensurable platform as emotional output... All the while knowing they could very well read your sniffy disdain - and calling them narcissistic?!?! Christ.

They could be blogging in flashing ClipArt for all I care. Show some compassion. You may have the right to say whatever you want about this, but it doesn't mean that a) you should, or b) it's not worth taking the time to couch your reaction in a more sensitive way - as many others have done in this read when conveying their mixed emotions.

Would I do it differently? Who knows. Those poor people are walking in a shadowland I hope never to enter.

But sure, tzikeh and jokeefe, take a dump on their pain in whatever language you care to. You have every right to express your reactions to the piece. And being right is definitely of critical importance in this deeply emotional, horrible, unique situation. The entitlement and lack of compassion is very disappointing and depressing.
posted by smoke at 7:33 PM on May 1, 2012 [8 favorites]

I think that lack of gravitas toward the death of a baby also confounds people's expectations.

Perhaps that lack of gravitas is balanced out by their baby just fucking dying in real life. From a collapsed lung. While her father performed CPR.

What the fuck, metafilter. This thread is absolutely insane.
posted by odinsdream at 8:21 PM on May 1, 2012 [3 favorites]

Although I think most normal people would feel bad for these parents (including myself - although I am a little creeped out) I think calling other posters sociopaths just because they don't seem sad about Avery's death seems utterly uncalled for. While this child's death is a tragedy, the fact is that in some parts of Africa, tragedies much more horrible that this happen on a daily basis. Should we fail to care about African children simply because their relatives don't shamelessly promote them on the internet? If we aren't obligated to care about them, then I would like to know why not. And if we are obligated to care (as I certainly hope!), then I would like to know why some people are crying about Avery but not at all about the African kids who are sexually abused and sometimes crippled by their mining supervisors. Out of sight, out of mind...?

This is not to trivialize Avery's death - obviously I feel for those parents. But I think there have been some rather knee-jerk overreactions to some of the posters for what people feel is callous behavior and maybe a reminder of the kind of world we live in might help put things in perspective.
posted by wolfdreams01 at 8:57 PM on May 1, 2012 [3 favorites]

This is the voice I heard the blog in, sadly.

But the thought of this daddy writing himself a goodbye letter from his little girl, to have to forever remember that she loved him as much as there was love, and to give him a charge to make a difference after she was gone, to avenge her death, even... it cuts through the cynicism of living in a post-Lil' Markie world.
posted by Ambrosia Voyeur at 9:01 PM on May 1, 2012 [1 favorite]

"Here's what we are going through, and here is what we're doing for our daughter to give her a 'normal' life. Here's the reaction we observe, and here's what's cute and what's heartbreaking." --> not creepy

"But hey it wasn't all bad, because I got to ride in an ambulance with two muscular firemen who wouldn't take their eyes off of me." --> a little creepy

Just my opinion, please don't let it destroy your faith in humanity. We all agree, this is a terrible, terrible situation.

.
posted by Slarty Bartfast at 9:10 PM on May 1, 2012 [1 favorite]

But sure, tzikeh and jokeefe, take a dump on their pain in whatever language you care to. You have every right to express your reactions to the piece. And being right is definitely of critical importance in this deeply emotional, horrible, unique situation. The entitlement and lack of compassion is very disappointing and depressing.

Oh FFS. I've tried in my comments to emphasize my empathy for the parents and my recognition of their grief; I am also a mother, and naturally I hurt for them. I've mentioned this multiple times. I've also tried to separate out that feeling from a consideration of how their blog has intersected with the attention of the media and the internet, and the whole "bucket list" structure of their site. I didn't realize that it was heresy-- let alone that it made me a sociopath-- to discuss this site and the attention it has received with any kind of distance at all. I am desperately sorry for the parents, and for their child, and I know they were doing their best. It didn't occur to me that their blog was sacred and out of bounds for any discussion (even as they were pitching for an appearance on Ellen, for example) or that talking about this constituted "taking a dump on their pain". You describe their situation as being "deeply emotional, horrible, and unique". I'll give you the first two, but the third is simply wrong. There are many, many parents in this world suffering through similar trials (and far worse), and dealing with it in multiple ways. Human beings are complicated, and every family is different, and I see nothing wrong with thinking about, or questioning, the attention this family has invited and how that has played out online and in the news. This is Metafilter: talking about the web, about culture, about the public realm. It's not a church.
posted by jokeefe at 10:14 PM on May 1, 2012 [15 favorites]

[Guys, I think people are digging in and ramping up on both sides, and it doesn't need to be this way. Tragic events sometimes polarize us when approaches differ, and then the stakes feel higher and the gulf wider than with other differences. I recommend Metatalk if you really wish to continue attacking each other, but mostly I urge stepping back, stepping away, cooling down.]
posted by taz at 10:35 PM on May 1, 2012

I know a woman, widowed about six months ago, who posts messages directed to her late husband just about every day on her Facebook account. The content of these messages isn't especially weird - mostly just stuff about what she did that day or has planned for tomorrow, usually closing with some variation of "miss you, know we'll be together again in heaven."

I must admit to being put off a bit, at first just by the existence of these messages, and now, by how long they've continued. But then after thinking about it, I figured, everyone processes things differently, and if it's helping her with her grief, who am I to judge?

It's not like I'm being forced to read her Facebook posts. And there's no sign that she's losing contact with reality, or is, FSM forbid, a danger to herself or others. These messages are just an epistolic way to grieve, albeit from someone with no particular experience or training as a writer.

Point being, I see some parallels to the subject of this thread. These people have suffered a terrible loss. If what they're doing with the blog seems a little weird - well, grief can make people do strange things. I do hope they are successful in raising awareness of the need to test for the disease that affected their daughter.
posted by Nat "King" Cole Porter Wagoner at 12:17 AM on May 2, 2012 [3 favorites]

I have a Facebook friend who posted updates from her baby's perspective throughout her (healthy) pregnancy. I have seen many many baby photo albums with captions along the lines of "This is me taking my first bath. I had so much fun!" or pictures of them in sports paraphernalia and a "My Daddy and I love the Cubbies!" quote 'from the baby'. People get cutesy and twee with babies all the time. To me it's kind of like dressing twins in matchy-matchy outfits or putting ridiculous hair bows on hairless infant's heads. It's not something I would ever do with my kid and it kind of makes me mentally gag, but it doesn't say anything about the parents other than they have a much higher threshold for saccharine cutseyness than I do. If this child hadn't been dying, I can not believe that any of you responding so negatively would have done anything more than roll your eyes at the first person approach.

I have more experience with genetic disorders than I would care to. One of my children has a (very minor) extremely rare genetic condition that fortunately shouldn't ever cause her any serious concerns although it is severe in some cases. My little sister has a different extremely rare genetic condition that isn't life-threatening any more but will affect her to an uncertain extent throughout her lifetime. Some family friends have a child with yet another rare and very serious genetic disorder that is disabling and life-threatening. I had never heard of any of these three disorders and they are all three at different levels of research, but the story from doctors on all of them (and most, if not all genetic disorders) is very similar. There is no cure at this point; we can't do anything but manage the symptoms and complications; we don't really understand how or why it happens; and most importantly, research is promising but a lot more needs to be done.

My friends have been working very hard to work toward raising awareness (and money) for their child's condition both for his sake and for the sake of kids who get it in the future. In fact, they posted another link on facebook about it less than an hour ago. Yes, it is attention seeking behavior. No, it is not narcissistic. If they knew a way get this level of attention and fundraising for their son's disease, you bet they would do it. Not because they want the attention for themselves, but because they have been affected by this terrible thing and they want someone to find a cure.

If Avery had not been diagnosed with SMA, these people would not have started their public blog or built a bucket list for her but they would probably have shared her infancy with their friends and family in a similarly cutesy and twee manner. Because they are cutesy and twee people. As it is, they wanted to make the most of their child's short life and try to do what they could to combat the disease in the process and they did it in the style that felt right to them. They tried to make their child's life count for something. They focused on the life that could have been rather than dwelling on her impending death. Other people (including myself) would have probably kept it private, and stayed home and held the baby and cried a lot and would not have raised a penny for research or brought any attention to the testing or built any happy memories with the child. Is that really less creepy?
posted by Dojie at 8:18 AM on May 2, 2012 [12 favorites]

All the while knowing they could very well read your sniffy disdain

This argument pops up now and then on MetaFilter and it's always pointless. So, no one should ever say anything contentious or negative about anyone online, because that person (or their parents/children/neighbors/hairstylist) might read it one day!

You've made your point; you think that people who don't feel exactly the way you think they should are horrible horrible people, and what's more they shouldn't take part in the thread. Fine. But that "someone might see!" argument is just stupid.
posted by tzikeh at 9:10 AM on May 2, 2012

So, no one should ever say anything contentious or negative about anyone online, because that person (or their parents/children/neighbors/hairstylist) might read it one day!

I don't think this is always true, rather I think it depends on the situation, the people involved, and what exactly is being critiqued and how.
posted by the young rope-rider at 9:33 AM on May 2, 2012

tzikeh, I don't think you're horrible or a sociopath. I just think you are being hurtful. Your words hurt me as someone who aslo has experience profound insanity inducing ongoing grief that has left me feeling alienated from the human population because of how many people in the world respond to profound grief in the manner you have.

What is behind the attempt to attach to a persona that is "their daughter" to them is the desperation to not face the reality. Because the reality that there may be no god and all this sufering is for shit and none of it matter and this little being existed and got it's first tastes of life only for that to disipate even in the midst of the very human and meaningful dreams that every parent has for their child--- that kind of suffering is enough to leave people screaming in a fetal position for months. Pain that can come and go for years. Pain that is not socially acceptable to express NO MATTER HOW YOU DO IT.

Pain that no matter what outlet you take to make it disappear or express it or carry it-- it WILL affect you, and people will find the ways it significantly alters who you are and how you feel and exist in the world inherently creepy. That is nature of that level of pain.

And for you to hone in some tedious detail about how inconvenient seeing them desperately cling to a delusion of who she might have been is for you-- I do believe it is cruel. Deeply, deeply cruel. And actively harmful to those who know such grief.

But I do support your right to self expression all the same. And yes, you are normal. It is a normal response to feel revulsion towards and avoid human beings in profound grief and suffering.
posted by xarnop at 10:00 AM on May 2, 2012 [7 favorites]

In less than a day, over $100,000 has been donated for gene therapy in Avery's name.
posted by zizzle at 10:33 AM on May 2, 2012 [6 favorites]

BTW that link didn't work for me, if anyone else is having problems it can be found here.

I too think it's awful that people have to come up with a gimmick or something that will go viral to inspire human beings to do good in the world-- but face it-- humans otherwise quite frequently don't.

It's like saying that women shouldn't have to sell their bodies to get money for food. As much as it might be painful to see a woman advertising sex because she literally needs food or shelter-- are there actually enough decent human beings who would help simply because it's the right thing? We need motivation, spark, something to remind us to do the right thing and to make the world better. Because inertia and avoiding doing things for others is our most common state. I think the nudge, whatever weird ways they come, can be needed. What's sad is that they are needed at all. That we don't instintually make our best efforts to continually work for change. But then again, most of us just don't have the internal reserves to literally save the world every second. We just... can't. We can only do what we can do and pushing ourselves to hard can damage us. So we take moments of inspiration and do what we can with them. And however this man (and wife?) are managing to carry out this endeavor they aspire to do-- with the gimmick that went viral and may be an irrational coping mechanism-- I think they very well might in fact change many lives. And perhaps, find at least some meaning in the suffering. And even make it that much more possible that, potentially, some portion of other human beings may be spaired their specific form of suffering.
posted by xarnop at 11:17 AM on May 2, 2012

And for you to hone in some tedious detail about how inconvenient seeing them desperately cling to a delusion of who she might have been is for you-- I do believe it is cruel. Deeply, deeply cruel. And actively harmful to those who know such grief.

xanorp, where do you get the idea that tzikeh, or myself, have never experienced such grief?

And with that, I will bow out of this discussion.
posted by jokeefe at 11:53 AM on May 2, 2012 [1 favorite]

This thread is filled with a bunch of "I'm right and you're wrong" posts and guess what? Who gives a shit.

I, too, find the blog creepy, mostly because the father treats the 5 month old baby as someone who finds grown men attractive and is flattered when they find her attractive and I would find that creepy if she didn't have SMA and it was just one of those cutesy family blogs. Yuck. That is one case where giving adult thoughts to a baby for literary effect makes me nauseated.

But I admire the hell out of them for raising the awareness of the gene, promoting genetic testing (which I never would even think to ask for) and raising money for said testing.
posted by Kokopuff at 12:21 PM on May 2, 2012 [3 favorites]

Yes, I believe that. Many people who have had depression/mental illness/been abused/suffered terrible loss-- can be the most judgemental and cruel to their own kind-- the others who didn't mourn/recover/respond the "right way". If that is how you cope with terrible loss-- positioning yourself as a "correct" mourner, and other as "creepy" mourners, I respect that may literally be a survival mechanism you need. I am sorry you are suffering such that it diminishes your ability to feel empathy for those who cope differently than you.

I certainly don't find the writing style appealing, but I also think their child is dead. The kid is fucking dead, and it REALLY doesn't matter how the fuck they deal with it or honor the child's life because the child is either disappeared or having a blast in heaven- either way IT DOESN'T MATTER how they portray the child or how they coped while the child was alive so long as they showed that child love and made sure she was ok while she was alive as best they could.

If they had other kids, other standards of behavior might apply-- but they were just trying to accomplish managing to give love to one child who was going to die in the near future without sobbing all over the poor thing hysterically every day. The child has no idea what the parents wrote on the blog and it just plain doesn't matter. I don't understand the passion behind the "but it's creepy". I don't even understand why it's important to judge them as if they have done something wrong.

I don't think they have. I think they just aren't good writers, haven't been exposed to critical circles that analyze the ethics of how to represent your children respectfully online, and are possibly a little bit delusional right now. Why do they need to be called CREEPY in capital letters as if they have done something harmful to someone? If their child had grown up, then yeah, it would be WAY awful to have that crap written about you, but there is no child to give a shit about that.
posted by xarnop at 12:38 PM on May 2, 2012 [1 favorite]

Yes, I believe that. Many people who have had depression/mental illness/been abused/suffered terrible loss-- can be the most judgemental and cruel to their own kind-- the others who didn't mourn/recover/respond the "right way". If that is how you cope with terrible loss-- positioning yourself as a "correct" mourner, and other as "creepy" mourners, I respect that may literally be a survival mechanism you need. I am sorry you are suffering such that it diminishes your ability to feel empathy for those who cope differently than you.

Oh dear god. Drop it, please.
posted by jokeefe at 12:50 PM on May 2, 2012 [1 favorite]

I don't understand the passion behind the "but it's creepy". I don't even understand why it's important to judge them as if they have done something wrong.

xarnop, I really think you misunderstand these reactions. The point isn't the writing style isn't sophisticated enough, or to smirk at a family's pain. "Creepy" is shorthand for a discussion jumping-off point (and a word I think would have been better to avoid). Unless the point of this post is sheer unmitigated tragedy porn (and that's a whole separate question) there are a boatload of valid Metafilter discussion topics here. Off the top of my head, the intersection of social media and grieving. Bioethics. Reproductive rights. etc. etc. Metafilter is not some kind of memorial site, nor is it for cause advocacy. I agree that people should be decent but at this point you're not promoting that, you're clamping down on discussion and trying to whip people into line with shame and aspersions.

Many people who have had depression/mental illness/been abused/suffered terrible loss-- can be the most judgemental and cruel to their own kind-- the others who didn't mourn/recover/respond the "right way".

Can you not see this is what you are doing yourself? Condemning others for not responding the "right" way? Loss is everywhere, and we are all our "own kind."
posted by werkzeuger at 1:12 PM on May 2, 2012 [9 favorites]

I think werkzeuger has it. If we're not allowed to say we find the blog a bit creepy or criticise it there's no point to the post. The existence of the blog is only interesting inasmuch as people react to it. And if we're not meant to be thinking about the blog, but about the disease itself, there's no reason for the blog to be the only above the fold link.
posted by hoyland at 1:22 PM on May 2, 2012 [3 favorites]

Missed this when it was posted, which is too bad because it's a great excuse to link to this awesome tumblr, Laughing at My Nightmare, written by the now-19-yrs-old Shane Burcaw, who has SMA. There's a post cataloging some of his longer past posts here. He's a hilarious writer who is also working to raise awareness and funds for SMA & MDA research.
posted by neda at 1:29 PM on May 2, 2012 [4 favorites]

Many people who have had depression/mental illness/been abused/suffered terrible loss-- can be the most judgemental and cruel to their own kind-- the others who didn't mourn/recover/respond the "right way". If that is how you cope with terrible loss-- positioning yourself as a "correct" mourner, and other as "creepy" mourners, I respect that may literally be a survival mechanism you need.

You're positioning yourself as a correct mourner. Do you not see the contradiction here?

You still don't see (or refuse to see) the difference between "I find how they're handling this kind of overwhelming sadness creepy; it creeps me out" and "I think they're mourning incorrectly; this is the wrong way to deal with their grief." I'm not judging them. I'm not saying there was possibly a "right" way to do it. Neither is jokeefe. Neither are any of the other people who said they find it weird or creepy. Frankly, I don't think you're ever going to see that.

As for zizzle:

I was hoping this thread would talk about Avery and all the things her parents arranged to do with her so they could have awesome memories before she died. I was hoping it would talk about genetic testing and maybe someone would chime in with another genetic disorder not talked about much and raise awareness. I was hoping it would serve the purpose of Avery's blog and spread awareness of SMA.

I never imagined anyone would find the way the blog was written to be creepy or wrong or grotesque and have that be so much of the focus of something so unfair and terrible.

So, really, the heart of your problem with me is that you posted this FPP with expectations of what kinds of conversation would come from it. Other conversations came from it, and now you're pissed off, and taking it out on me (and one or two other people) who dared to corrupt your vision of how your thread would go. What I said is secondary; that I said it at all infuriates you. That's a bad way to approach MetaFilter.
posted by tzikeh at 2:20 PM on May 2, 2012 [3 favorites]

"You're positioning yourself as a correct mourner."

Ha. Haha. Advocating NOT INSULTING mourners, is positioning myself as a correct mourner?
posted by xarnop at 2:27 PM on May 2, 2012

Advocating NOT INSULTING mourners,

Except no one is insulting mourners. As I said above, you're determined not to see the difference. What's being said is not what's being read.
posted by tzikeh at 3:21 PM on May 2, 2012

You don't think calling people creepy is insulting?
posted by xarnop at 3:25 PM on May 2, 2012

Again, you're not reading what I'm saying, and I've run out of ways to try to explain the difference.
posted by tzikeh at 3:41 PM on May 2, 2012

So have you ever dealt with grief in "creepy" ways, or when you lost your children did you do it in an uncreepy way? Have you ever experienced traumatic grief and if you actually have are you sure you know how creepy/uncreepy you might have been percieved by others?

Just curious. It's an interesting conversation.
posted by xarnop at 4:29 PM on May 2, 2012

when you lost your children did you do it in an uncreepy way?... Just curious.

When did I stop beating my wife? You're not curious; you're snide.

You know nothing of my life and how much traumatic grief I've suffered and continue to suffer--and you still don't get that I'm not judging the parents, or saying that what they've done to cope with their pain is somehow wrong.

If you are honestly curious about how I, personally, have dealt with/continue to deal with deep and unending grief and depression in my life, you can MeMail me, if you think that... I don't even know what. Somehow knowing about my private life is going to magically flip the switch and you'll understand? If not (which is what I believe to be far more likely), you're trying to find a way to use my own experiences to "prove" that I'm wrong and you're right--which, I reiterate, is something you seem to think *I'm* doing, which I'm not. So, if that's the case, then fucking drop it, because I've explained myself several times in several ways in this thread, and you haven't listened, or for whatever reason, you're incapable of understanding it.
posted by tzikeh at 4:56 PM on May 2, 2012 [3 favorites]

And with that, I'm done here. My MeMail is open for people who want to discuss in good faith, but anyone looking to have me trot out my tragedy bona fides so that you can put them up against your own to show that somehow I'm not suffering enough to be allowed to have an opinion on the topic of grief can stay the hell away.
posted by tzikeh at 5:01 PM on May 2, 2012 [3 favorites]

I don't think anyone is justified in insulting others in grieving. If you have lost control of your behavior due to grief and need to insult others in order to cope then it's not your fault. But no matter what any of us have been through, it just doesn't make sense to meet others suffering by saying their desperate attempts to reconcile that which cannot be reconcilable are creepy.

It was wrong. But I understand if you couldn't stop yourself due to your own pain and needed to deal in that way. I also think that most people who harm others with their words are doing what they need to do to cope.

It's ok, I believe in forgiveness. But no, even suffering grief does not give the right to insult others in grieving. That actual does harm people. I am not in any way attempting to insult or silence you. I just find it utterly incongruent that you claim to be a person who has empathy for this family and feel completely comfortable procclaiming them creepy for doing what helped them cope with a terrible loss- that did NOT harm or insult anyone else.

I do in fact care about your suffering. I don't think it gives you the right to be mean to others in suffering. But I am happy to listen and will memail you,.
posted by xarnop at 6:22 PM on May 2, 2012

I don't think anyone is justified in insulting others in grieving. If you have lost control of your behavior due to grief and need to insult others in order to cope then it's not your fault. But no matter what any of us have been through, it just doesn't make sense to meet others suffering by saying their desperate attempts to reconcile that which cannot be reconcilable are creepy.

It was wrong. But I understand if you couldn't stop yourself due to your own pain and needed to deal in that way. I also think that most people who harm others with their words are doing what they need to do to cope. …It's ok, I believe in forgiveness.


Wait, what??
Lost control of his behavior? Insult others? Where the heck are you getting all of this?

I think most, if not everyone on this site can agree that are few sadder things in this world than dead children. It think we can also agree what the Avery’s parents have gone through is awful and heartbreaking, and that they should do whatever they need to recover and move on. They wanted to spread Avery’s story and get the word out about SMA: I’d say they’ve been pretty effective, as I’m not going to forget Avery or this thread anytime soon, so, good on them.

I can’t make it any clearer than tzikeh has, but having and reporting the reaction “I think X is creepy” is in no way the personal attack or character judgment on the grieving parents that you have it made it out to be. It’s an honest and completely justified way to react to an unusually public display of what many people consider a very private thing. (While “creepy” wasn’t the word choice that I used, I was also left feeling uncomfortable after spending a few minutes reading through the blog.) I—and I don’t think any of the others in this thread who had similar reactions—don’t feel any less sympathy for Avery’s parents and family. We are just expressing that we are/were taken aback at the manner in which they have chose to publically share their grief.

The world can be a cruel and f*d up place, and we are all in the same boat in trying to make sense of it. What’s the point of having a kick-ass community like Metafilter if we cannot openly discuss our reactions and thoughts about events—even extremely sensitive ones—without the conversation devolving into users making completely unfounded moral judgments and accusations about other users and their motives just because they differ in opinion? I’m reminded of when I was lambasted on this site shortly after joining it for expressing my doubt about Chris Christie’s ability to effectively govern were he to run and be elected president in consideration of his obvious and concerning health problems. We can and should do better than this.

Anyway, this dead horse has effectively been beaten, so I’m going to leave it at this and not get into it beyond this post. (I’m also adding “sick children” to my growing list of topics that Metafilter doesn’t do well.)
posted by Kevtaro at 6:24 AM on May 3, 2012 [7 favorites]

Our reactions to the way something is done may not be intended as a personal attack on someone's character, but the method we choose to present our reactions can and often do insinuate such.

Consider the following two approaches:

A) "I empathize with the family and their daily struggle, and I wish them the best. No one should have to suffer through such tragedy. Unfortunately, a part of me found it difficult to fully read their blog because their approach was so different from what I would have done and made it uncomfortable to continue. Still, just the thought of what the parents must be going through is enough to earn my sympathies and condolences."

B) "Man, that blog was so utterly creepy and disgusting. First-person writing as if the kid can talk? How presumptuous. Who makes a bucket list for a kid that can't even fathom what a bucket is? Sorry to hear the kid died."

I firmly believe we're all entitled to our opinions and our individual tastes. At the same time, I think we all have a responsibility to understand that the way we express these should consider the opinions and tastes of others.
posted by CancerMan at 10:03 AM on May 3, 2012 [6 favorites]

This is going to get me told I lack empathy, but other than calling the blog 'disgusting', I think option B is a perfectly reasonable response. The best response? No. It could do with expanding. There's no point in adding three sentences about how you feel for the parents. Until this thread, I would have assumed that it would be taken as read that you feel for the parents and read those three sentences as existing only to demonstrate to others how empathetic you are.
posted by hoyland at 12:39 PM on May 3, 2012

Metafilter is for discussing links. All thisI has beento within site rule boundaries, nothing here is out of line. Please don't chastise other posters for valid reactions.
posted by agregoli at 1:58 PM on May 3, 2012

"Please don't chastise other posters for valid reactions."

Please don't chastise other humans for valid -grief- reactions.

So mefites can dish it out but they can't take it?

Agreed NOTHING here is out of line.
posted by xarnop at 2:05 PM on May 3, 2012

I'd say the vicious armchair psychoanalyzing about other site members is out of line and breaks the rules.

Odd lack of moderation in this thread.
posted by werkzeuger at 7:22 PM on May 3, 2012 [1 favorite]

"Valid grief reactions" don't include attacking other site members for their comments. Talking about the link is what we do here.
posted by agregoli at 5:21 AM on May 4, 2012 [2 favorites]

There is a meTa.
posted by rtha at 7:16 AM on May 4, 2012

Okay. I guess maybe I should join this conversation now. I've avoided it, knowing it's right here just staring at me. Waiting. My heart is pounding right now just typing this.

My son was born with a condition known as CHARGE syndrome. If you want, donate to the foundation via my son's page there.

When he was born via emergency C-section at 32 weeks (along with his twin brother) he didn't cry. He barely moved. When they pulled him from my wife they immediately whisked him to a separate part of the OR and did whatever they could to get him breathing. I thank God they were able to accomplish that. After a few minutes, they put him in an mobile isolette (jut google it) told us to say hi and then rushed him to the NICU. He stayed there for 4 months. 4 months of going home without him. In fact, when my wife was discharged from the hospital we went home without either of the boys. We had two babies and an empty house.

My son eventually died on March 14th at 8.5 months of age. We were at the Children's hospital in Chicago. I watched him die, and I actually swooned. I never thought that was a real thing until then. I had a bunch of nurses & doctors & god knows who else try to break my fall. It would have been worse if I wasn't there. How's that for a pickle?

I'm laying it on thick because perhaps it'll help people get a perspective of what having a child with a condition like this means; if at least only to a small degree.

I cherish every moment of my life for those 8.5 months. All the grief, joy, frustrations. His first smile on Christmas morning was a miracle that will always light my days.

So, I believe that I have some insight into what's going on with Avery and this blog. Check my profile. We blogged as much as we could of Josh's short life. I don't find this blog creepy, but not because I come from some high moral ground. I guess I just have a (terribly) common ground that lets me empathize with these people.

I hope that this family can look back at this blog for the rest of their lives. Perhaps not to relive it, but at least to help them remember their daughter. Remember what she looked like.

I don't know. I think people consider me creepy as well.
posted by MustardTent at 9:35 AM on May 4, 2012 [7 favorites]

Not at all, MustardTent; I'm very sorry for your loss.

When I was 20 weeks pregnant I suffered a hemorrhage, the result of placenta praevia. During the emergency ultrasound, a doctor turned to one of the technicians and said "Is that a separation?", as if he'd forgotten that I was actually present and might be able to infer what that meant. I remember asking "Is my baby going to be okay?" and being greeted with the worst possible silence. That moment, staring down an unimaginable darkness, is one I'll never forget. I try to imagine that darkness extending for months and ending in death, and though I can't know what that experience was really like, I had a glimpse of it.

I still maintain that it is possible to discuss this particular blog as a media phenomenon and as a cultural event without this constituting a mockery of the parents or a delegitimization of their grief.
posted by jokeefe at 10:11 AM on May 4, 2012 [4 favorites]

I think most parents, or people caring for a child, have a bucket list - just rephrased.
'Things to do' with a baby, a child, by the time you're a grown up.

Take the SMA out of the equation:
* The things on the list are the things most parents would have for the children.
* The 'talking in the first person' about the child is also very, very common. Many parents do it, and blog or post from the perspective of their baby (it's not even a grief thing, I think it's a empathy/parental thing - how does my baby feel about this thing? What would they be saying if they could talk?).

Put the SMA back in the equation:
* They decided to do as many of the things they had wanted to do with their baby as possible, before she died. Good for them. As pointed out, there are SMA children who have lived til adulthood.
* Fundamentally, I guess the only thing different about this blog is that it's about a baby who was dying, and that the parents interacted with the world in the very common ways people do for babies that aren't dying, and that is the controversial factor.


Also, I'm lucky that I live in the country where there aren't heaps of anti-abortion ads all over the place. I can see that really contributing to a creepy perception.


What I got from it, is a childhood 'Todo' list is a really good idea that I think I need to do.
Unless I have it written down, I often forget about the many plans and opportunities I could take up (cue my forgetting to sign up nephew for baby swimming classes - why do I still feel guilty about that? He's in primary school!).
And furthermore, if I am ever caregiver for an ill child, to do the same thing for them - it'd be an additional unfairness on them not to. Live while you're living, and all that.


Finally, good on the parents for raising awareness of this condition, and raising so much money for it. Awesome!


(P.S. it was written by a guy, I don't think the 'big strong firemen' was meant to be about her sexual attraction to them... o_O?!?!
When talking to small children, people often use phrases like that. I'd say firefighter. They fight fire!
So yeah, "Hey! Got to meet a fireman! Firemen paid lots of attention to me!" is something that most children anywhere from toddlerhood onwards would tend to think is cool. Just going from my sample of every child I've ever met...)
posted by Elysum at 5:43 PM on May 6, 2012

(P.S. it was written by a guy, I don't think the 'big strong firemen' was meant to be about her sexual attraction to them... o_O?!?!

I'm pretty sure it was sexual. The baseball post has stuff about attraction to the players. Besides, surely your average straight man is able to imagine straight women being attracted to men.
posted by hoyland at 5:50 PM on May 6, 2012

My friend's baby, the one I mentioned earlier, passed away last week. The funeral is tomorrow.

They never got to take her home, never got to take her out in the sunshine, never got to do anything but desperately love a child attached to wires and tubes and monitors. Every single one of us who is gutted for them would give anything for some twee updates.
posted by Lulu's Pink Converse at 10:57 AM on May 9, 2012

I'm so sorry.
posted by the young rope-rider at 10:58 AM on May 9, 2012

I'm so sorry, Lulu.

My deepest condolences.
posted by zizzle at 1:12 PM on May 10, 2012

.
.

:(
posted by Elysum at 4:16 PM on May 10, 2012

Thank you. It was probably inappropriate to tack this on to the end of this thread, and I apologize for that. But I cannot imagine, if I am this gutted, how any parent who loses a child continues to put one foot in front of the other.

The funeral mass was this afternoon. Right now, for me, there is not enough bourbon, ever. I don't know how my friend is still upright, much less sane.
posted by Lulu's Pink Converse at 7:52 PM on May 10, 2012