What if I haven’t earned my wings?

April 6, 2010 1:44 PM

With 12-year old Maggie Wiederholt's permission, Quad City Times reporter Kay Luna and photographer John Schultz followed her and her family for several weeks as the terminally ill Walcott, Iowa girl faced death - and made choices about how to live.

Maggie's Choice is a heart-wrenching project that captures the last days of a young girl with with a rare form of Behcet's disease.

Maggie died last Sunday, April 4th, 2010. The final two installments of the project will be released over the next two days.

Some information on Behcet's disease.

More on the project from reporter Kay Luna.

Not to be confused with this Maggie's Choice.

posted by Lutoslawski (33 comments total)

Trying to lighten the mood, she teasingly asks Maggie, “What’s the word of the day?” referring to her daughter’s new habit of picking a cuss word du jour.

The girl slowly grins and says, “Bastard.”

...OK, that got me.

.
posted by Halloween Jack at 1:56 PM on April 6, 2010

Wow, just reading the stories (click on "Stories" at the upper left of the Flash player to open up a drop-down menu) is heartbreaking. Then you get to the archives (in the same drop-down menu), from when Maggie had a comparatively normal life, "only" suffering from brittle bone disease, and it's even more heartbreaking.

Hell no, I'm not going to watch the video.
posted by infinitywaltz at 2:01 PM on April 6, 2010

Hell, no, I'm not going to even click on a single link on that site while I'm sitting here at my desk. I'm going to steel myself for a couple of days then come back to this, I think.
posted by yiftach at 2:20 PM on April 6, 2010

I'm probably going to find myself unable to watch these and really engage, but I wanted to thank you for sharing the story.
posted by bunnycup at 2:21 PM on April 6, 2010 [1 favorite]

.
posted by MarshallPoe at 2:22 PM on April 6, 2010

I can't stop crying.
posted by Muddler at 2:34 PM on April 6, 2010

Several years ago I bought a diary in a thrift shop. It only had a few entries, but it was clear that it had been written by a sick little girl in the 50s. (You can read it here, if you want.)

I never met the little girl -- she died 20 years before I was born -- but I always felt indelibly connected to her short life. I finally did some research and found her sister, who was mentioned in the diary. Now she and I are connected too.

While sites like this can seem gruesome or morbid or vulturish, they also serve to keep people alive after they're gone, even in the hearts of people who come long after. That's pretty special.
posted by mudpuppie at 2:34 PM on April 6, 2010 [24 favorites]

Had to stop at the photo of her dog 'kissing' her nose.

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posted by caveat at 2:40 PM on April 6, 2010

This is terribly sad. Really, appreciate your life. Appreciate every damn day that isn't 1/10th as bad as this poor girl's best day ever was. RIP.
posted by contessa at 2:40 PM on April 6, 2010 [1 favorite]

While sites like this can seem gruesome or morbid or vulturish, they also serve to keep people alive after they're gone, even in the hearts of people who come long after.

Yes, yes, yes a thousand times yes. And from the perspective of a family who lost a child, to know that others think of your child - whose life was too short, and who never got to grow up and have a chance to do Big Things - and are inspired by her, appreciate life more for knowing about her, and generally just take a moment to be nicer, is a big fucking deal. While sometimes people can read these stories almost with an element of morbidity, I hope most don't. I hope more do what you did, mudpuppie, and think of those sick and dead children as real people, who lived and loved and were loved, not just a story or an almost fictional character. It's easy to fall into that, but when I see stories like you shared, and the kindness with which people are reacting to this story, it's...good.
posted by bunnycup at 2:42 PM on April 6, 2010 [12 favorites]

the not to be confused with this maggie's choice link makes for some appropriately eerie background music for this post.

i couldn't read the stories, and i'll never watch the videos, but those pictures are beyond heartbreaking. if ever there was an appropriate time to say 'rest in peace,' this is the one.

.
posted by msconduct at 2:49 PM on April 6, 2010

Drying my tears caused by the dog kissing photo (no, I can't watch any video now) I figured the wikipedia link might be dry enough for me. Wrong. Oh my god what a horrible disease.
posted by dabitch at 2:57 PM on April 6, 2010

I can't watch the videos, just the stories broke my heart.

.
posted by sarcasticah at 3:07 PM on April 6, 2010

I can't click on any of the links because just your comments are making me cry at my desk.
posted by Jacqueline at 3:32 PM on April 6, 2010

I'll watch this when I get home, but for those at work: the Wikipedia page has a penis on it. Just FYI, NSFW, and gruesome.
posted by chairface at 3:39 PM on April 6, 2010

Well.

I also thought I'd be OK just reading the stories, given my cold black heart and all. But reading Tuesday's story did it for me. And not in a tragedy porn way....just in awe of the strength and love in that mother and her little girl in that scene. And in admiration of the doctors who managed to remain engaged without falling apart, explaining to an elementary school kid the pros and cons of a DNR order. This isn't easy for 80 year olds, or 30 year olds, and I can't imagine anyone handling it with more dignity and grace than this remarkable 12 year old.
posted by availablelight at 4:03 PM on April 6, 2010 [1 favorite]

Off topic, but bunnycup, I think of you and Vivienne often.
posted by Maisie at 4:04 PM on April 6, 2010 [4 favorites]

You have to watch the videos.

Maggie is amazing.

Not just amazing as naturally portrayed in the journalism covering such a story.

She is the very definition of amazing.
posted by Muddler at 4:17 PM on April 6, 2010

You know, I hate to say this - but that's just how my mind works - while I have obviously huge sympathy here for the girl and her family, I just cannot help myself... I keep thinking: if only we put as much money into medical research, science and making ordinary people's lives better as we put into wars, the "defense" budget and bombing and killing civilians all over the planet, then perhaps some of these stories might have a happier ending. My apologies for the derail.

RIP, Maggie.
posted by VikingSword at 4:23 PM on April 6, 2010 [1 favorite]

Off topic, but bunnycup, I think of you and Vivienne often.
posted by Maisie at 7:04 PM on April 6 [+] [!]

So do I.



Bless this child and her family.
posted by pearlybob at 4:27 PM on April 6, 2010

We have a dear friend who is a Pediatric Oncologist. One night I just had to ask him " How the Hell do you do it day after day, without getting depressed ?" He looked me in the eye and smiled " Those kids are the most wonderful people on earth !"
posted by lobstah at 4:50 PM on April 6, 2010

fucking hell.
posted by deticxe at 5:15 PM on April 6, 2010

If there is a god, may it bless this little girl, her sisters and her parents as well as all the folks who were her friends.

.
posted by JohnnyGunn at 5:59 PM on April 6, 2010 [1 favorite]

OK. I went and watched the videos. They of course were devastating...and amazing, in terms of Maggie's character. But the one where she finally says she wants to stop fighting, that was spontaneously filmed by a camera man who just happened to join the family for the first time just an hour before? That also felt painfully intimate. I was left almost ashamed I was "there" to witness that moment, even though I know Maggie and her family wanted to educate the public with her last days.
posted by availablelight at 6:50 PM on April 6, 2010

No doubt, if she had lived to be prom age, she would have been invited to be sequestered with the gays and the learning disabled by their compassionate community. God damn its hard not to hate haters. god damn it.
posted by jcworth at 7:19 PM on April 6, 2010

iPad;dr

.
posted by jessssse at 7:26 PM on April 6, 2010

Osteogenesis Imperfecta Foundation for the brittle bone disease Maggie and her sisters have.
posted by lilac girl at 9:11 PM on April 6, 2010

fucking hell

There was a similar photojournalism story of a dying boy [cancer] and his mother that covered their last few painful months together. Almost certain I found it via Metafilter.

"Fucking hell" was the only way to describe it as well.
posted by uncanny hengeman at 9:16 PM on April 6, 2010

When my first boy was born I soon found myself in the, erm, ward-where-you-go-when-your-baby-is-a-few-hours-old-so-the-doctors-can-check-him-out ward.

After my boy got the all clear I notice a couple near me hovering over their child with a doctor explaining to them how fucked up their newborn is. A lot of things ran thru my mind. "phew, luck of the draw" for one, "imagine being the doctor - how many times a week would he be having this type of discussion?" as well.

But also, "FFS, haven't you got a room where you can be telling these people this terrible news?" I think the father was aware of me being within earshot.

This was a private hospital, too. Not some under funded, 6 mothers to a room, curtains for walls, get her the hell out of here we’re running out of beds, type facility.
posted by uncanny hengeman at 9:30 PM on April 6, 2010

.
posted by DreamerFi at 12:05 AM on April 7, 2010

Wow. I am *so* glad I have the 'normal' form of Behcet's. Not that the ulcers are any fun, but at least my bones behave.

.
posted by zug at 5:54 AM on April 7, 2010

.
posted by SisterHavana at 5:05 PM on April 9, 2010

Oh god, Maggie's videos have undone me.
posted by hot soup girl at 8:18 PM on April 9, 2010