Wednesday, October 20, 2010

Facebook friends, & raising awareness

Last Friday, October 15th, was Pregnancy & Infant Loss Awareness Day. I'm glad that such a day exists, for obvious reasons -- but I have to admit, I really didn't give the day too much thought. I'm not really sure why. I guess it's because it's an awareness day. I most definitely agree that awareness needs to be raised generally about pregnancy loss, & just how many families it affects. But nobody is more aware of pregnancy & infant loss than me, or any other parent who has lost a baby. I don't need reminding that it's an issue. I think about my daughter every single day. Every day, I am keenly aware of how different my life would have been, had she survived. Every day, I am reminded that I am not a mother, at least in the eyes of this pregnancy-&-baby-crazed world we live in.

So I really didn't think much about the significance of Oct. 15th this year. I didn't have a post planned, forgot to light my candle.

However, the night before, I did post one of those status blurbs that was going around on Facebook. One of my friends from our support group had posted it, with her daughter's name, & I just copied it over & inserted Katie's name.

ETA: This is the status update I posted:
Tomorrow on Oct 15th, we will remember all babies born sleeping, or the babies we have carried but never met, or those we have held but could not take home or the ones that came home but didn't stay. Make this your profile status if you or someone you know has suffered the loss of a baby. In memory of Kathleen Maria Lastname --
& all her friends in that big playground in the sky. : ) ♥♥♥
Now, for me, doing something like that is about as open & upfront about Katie as I get with people outside our circle of friends from group. I've always been a private sort of person, & I find it difficult to speak openly about my daughter & what happened to us, for reasons that other deadbabymoms & dads will likely understand. It's most certainly something that I find easier to do online, in writing, versus face to face, especially in a group/family gathering situation.

So, I was pleasantly surprised when my post got 12 "likes" & four comments from my Facebook friends. Several of my lossmom friends, both IRL & online, picked up on my post & reposted to their own profiles, including their own baby(s)'s names. I expected that.

But what I did not expect -- what REALLY surprised me -- was that three of dh's cousins reposted my post, with Katie's name. And our dear SIL, who added, "to our beautiful niece and little cousin you are forever in our thoughts until we meet xoxoxox."

And most surprisingly & touching to me, our 18-year-old nephew, who also added hearts & a little smilie at the end of the blurb. (Pithy comment from one of his friends: "Well said, dude." lol)

I responded to him, "Thank you... it means a lot to your uncle & me that you & (your brother/our other nephew) will remember her."

Awhile later, he had replied: "[We] will always remember her." Well, that had me in tears.

*** *** ***

At the same time, though, I had mixed feelings, both about posting that blurb, & the responses. Awareness can be a double-edged sword. Earlier in the week, both The Globe & Mail and the New York Times ran articles on "pink ribbon backlash" and "pink ribbon fatigue" -- not from the general public, so much, but from cancer survivors themselves. In the same vein, I've also seen articles bemoaning "Facebook activism." The point being that it's very easy to buy a pink ribbon (or a pink teddy bear or lipstick, or whatever), or post a status update for the cause of the day or the week, feel good about what you've done, & promptly forget about it.

As the Globe article points out:

Facebook’s campaign that asks women to change their profile to add innuendos about where they stash their purses may lead to a quick chat about the quirky campaign, but does it get anyone closer to preventing or curing the disease?

Ummmm.... in this case, anyway, I'd say, probably not. ; )

Still, you have to admit, over the past 30-40 years, greater awareness of breast cancer has raised millions of dollars & advanced research on a scale that those of us who have been through pregnancy/infant loss &/or infertility can only dream of. Breasts have long been a taboo subject in polite company -- hence the silence around breast cancer which only recently has started to be broken.

And what's a subject that's even more taboo to bring up in polite company than breasts? Dead babies, anyone?

As Mrs. Spit recently wrote so eloquently:

I’m devestated that my son is dead. My heart is broken, even still. But I’m also angry.... I’m angry that babies are dying. I’m angry that my governments award niggardly funding to research, I’m angry that researchers and drug manufactures would rather cure toe nail fungus than deadly disorders of pregnancy....

Women and their babies are dying, all around us, they are dying while we live our lives. All around us are crushed and broken men and women, and no one has any answers for them. We live our lives while women and babies die, and I still don’t understand, how are we not rioting in the streets?

And that, that makes me mad as hell. I don’t want memory, I want action. I want women and their babies to stop dying.


(With all due respect to families affected by SIDS) I'm reminded of another article I read some time ago that pointed out that SIDS affects far fewer families than stillbirth -- and yet the awareness of SIDS, the preventative "back to sleep" campaign, & the research dollars it has generated, vastly outweighs awarenss of stillbirth.

I'm not saying that awareness & research into SIDS is not important. It is. I just want to point out that SIDS babies have the advantage because they were born and lived, if only for a few days or weeks. It's not as easy to pretend that a baby never existed, doesn't "count," when you've been to see them, held them in your arms, maybe even fed & burped them or changed their diaper.

I want that same kind of awareness for babies lost during pregnancy. The babies most people never get to see or hold, sometimes not even their own moms & dads.

I want kick counts (one of the very few tools at a woman's disposal to monitor her baby's wellness) to become the new "back to sleep." None of my doctors talked with me about kick counts; I was vaguely aware of them from reading, but most of the books I read didn't recommend starting them until the third trimester. I never got that far, & Katie was so small, I never felt a whole lot of movement from her anyway. But I know of a few loss moms who, in their subsequent pregnancies, did kick counts, realized the baby's movements were slowing, and got to the hospital just in time.

I want to know why it takes two, three, sometimes four or more miscarriages before doctors do more than just pat moms on the shoulder and tell them to try again.

I want to know why some jurisdictions don't even keep statistics on stillbirths, or do autopsies as a matter of course.

While I have mixed feelings about the effectiveness of pink ribbons & Facebook posts, I've come to the conclusion that they're better than nothing, at least in these early days. It's a start. Raise the awareness and the dollars for research and support will follow, eventually. A Facebook status update may be a small thing, but I'm glad I did it. I'm glad that I took one small step this past week to remind a few people that, even today, some babies still die. Mine did too. (Remember?)

*** *** ***

"See??" dh said to me, reading the reposts and comments my Facebook post received. "Isn't it healthier to let people know these things instead of keeping them cooped up inside?"

Well... I have mixed feelings.

Frankly, it took me a long time to decide to sign up for Facebook. I already spend enough time online as it is ; ) & I was (& still am) concerned about the potential for privacy breaches. And I don't just mean the very real potential for Facebook to sell my personal information (& that of my friends) to one of its clients.

Until just recently, I was able to keep my "real life" and online existences fairly separate. These days, though, I have my relatives, dh's relatives, high school & university friends, real-life & online loss friends, online scrapbooking friends and others on my FB friends list. I don't think I've had a group representing so many aspects of my life all together in one place since my wedding, lol. And there's been a few times in the months since I've joined that my real life and online existence have converged, or brushed uncomfortably close together. It's a small world, & in some ways, the Internet generally and Facebook in particular have made it even smaller.

If one of my "real life" friends or relatives got really curious, they could no doubt follow some of my Facebook "likes" & friends back to my blog. I first got thinking about blogs when a couple of our support group clients started talking about their own blogs. They didn't say a lot on the subject, mostly just that they had them -- but when I got back home, I input a few key words & names on Google, and found all their blogs in less than five minutes flat. It gave me pause -- but obviously, it didn't stop me from eventually starting my own blog. ; )

But when I think about it, I doubt that people are really THAT interested in me, lol. And while I'm not about to rush out & hand out my blog address to all & sundry ; ) & I don't LIKE the idea that someone I know IRL might find this blog, I think I've come to realize that it wouldn't be the end of the world if they did either. I hope I never have to find out, though. ; )

If you're on Facebook, have you also found your worlds colliding in weird (or wonderful) ways?

28 comments:

  1. You always have such great, thought provoking posts. I'm glad your post got such comments and reposts, that is wonderful.

    FB... we have a love/hate relationship. The raising awareness stuff that's always going around, and all that... I really only do anything on October 15th. And I get feedback, hugs, remembrances, from others who've been there and even a few who haven't... but not a whole lot of anything. But that's okay, I think.

    I try to make sure I can't be traced to my blog, because I do vent about social situations sometimes. But I do have blogger/forum friends on my FB as well. The lines blur, but I try to keep them distinct to an extent.

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  2. That was a smorgasbord!

    It was nice to see your family commenting on your FB post - it is safer for them too I am sure. (thinking they don't want 'to bring it up' at gatherings)

    I think we do need a 'kick count' campaign. I think they don't promote it enough in pregnancy books because the doctors don't want pregnant women worrying so much and calling them. Cynical, I know.

    I don't know what we can do but get research dollars to earlier losses.

    I try to keep my worlds separate too, but I have found that I really like having dbm as B friends. And I have started posting more stuff about Serenity there (I try not to over do it tho).

    When I lit my candle, I thought of your Katie.

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  3. I want to make it clear, those of you who are already my FB frienmds, I'm glad you're there, & I love getting to know you better there. : ) Some of you & I already know we have a lot more in common than our blogs. ; ) But I know the potential is there for real life & online life to intersect in ways and with consequences that we don't even know about yet. That's what I was trying to get across.

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  4. I'm so moved by the story of your facebook post and reactions from friends that tears are streaming down my cheeks. Just wanted to send you a big hug!

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  5. Excellent post, Loribeth.

    So many things you've said here, especially in response to Mrs. Spit's excerpt ring so true for me.

    As I prepare for my comps (then dissertation, hopefully) I am confronted with many of these questions. I want to explore how it is that these very important questions not only remain unanswered (or answered unsatisfactorily) and what the implications of silence can be. How do we value women? Women who do not have easy pregnancies. Women who are not able to carry or carry with ease? Why are we 29th in the world for maternal and infant mortality rates (right behind *Cuba*)?

    What does this say about what we value as a society? What does it say about what it means to be a woman?

    I'm sorry to ramble on here... it's very late and I'm not sleeping, but I wanted to come back and share some thoughts, and just say, well, "Right on!" Keep more of these great posts coming!

    xo
    Sue

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  6. But then you write these really amazing, really important blog posts and of course it means that more people will find you because people need to read this, sweetie.

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  7. I'm wary of FB/blog pals colliding, which is pretty much the only reason I'm keeping my blog password protected.

    Although kick counts weren't really applicable to my multiple pregnancy, I agree that there needs to be more promotion of pregnancy complications and absolutely a revised approach to pregnancy loss. It's sick to make a woman have 3 miscarriages before investigation. My best friend is a "habitual aborter" (nice terminology) and has been treated very shabbily by some doctors and nurses.

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  8. Excellent post, Lori. I love the parallel about "Facebook Awareness" and (what will eventually become) Facebook Backlash in raising awareness for other causes.

    I absolutely one-hundred percent agree that these types of "Awareness" statuses are a start ... one that hopefully brings such taboo "socially unacceptable" topics to the forefront.

    But then there's the part of me (you know, the one who ranted on her last blog post) that just gets so plain annoyed at some of these seemingly random "awareness" statuses. (Mommy week? Really?! Isn't there an entire day in May which gets press coverage for an entire month before the actual day?)

    Believe me ... I'm all for activism and awareness (like "Wear Purple Day" this past Wednesday). In fact, I joke around with my Hubby, who back in high school nicknamed me the "Hippie Chick", that I obviously missed my calling as a lobbyist (too political and corporate for me) or a professional protest organizer. But ask me to wrap my mind around copying & pasting a Facebook status so that I can show appreciation for Police Officers or Nurses (even though the nurse in me *does* think there needs to be that recognition)? I personally think there are other more important issues that should be brought to the forefront.

    Okay, I'm rambling here ... but my point is this: Although there are aspects of me that I like to keep private and out of the public eyes (especially as it relates to my "professional" life) ... I admit that I'm not shy about voicing my thoughts in certain manners. Especially if it means "sticking up" for those that aren't as comfortable to discuss such taboo topics like stillbirths and infertility and living child-free after infertility. And even those topics that have nothing to do with family-building; like access to basic human rights or quality and efficient health care.

    Whew. Okay. Done rambling for now.

    Can't remember if I *did* comment on FB re: Katie ... but just know that you and Mrs. Spit and all my inspiring ALI friends were in my heart and thoughts last Friday.

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  9. Frickin' A! Just wrote and incredibly large response that blogger ate!

    Short end of the stick: Yay for raising awareness for those "socially unacceptable" or uncomfortable topics like stillbirth and preeclampsia and infertility and child-free living after infertility.

    Yay also for raising awareness about social injustices and accessibility to basic human rights. (What can I say? Hubby named me "Hippie Chick" back in high school! Must have missed my calling as a professional protest-organizer.)

    Boo for those other seemingly random Facebook "Repost this" statuses that only seem to raise awareness of those socially acceptable, "everyday" (at least for the general population) things.

    Seriously? Mommy Week on Facebook this week? Isn't there an entire day in May dedicated to this? One that gets advertised for an entire month before the actual day?

    Hence the reason for my latest post. And the emphasis that *most* of the time I don't mind that my life is so public; especially on Facebook. Not to say that I'm not consciously aware of my "professional" image (I've set up an elaborate privacy filter just for that) ... but I'm one that would rather speak out for those that can't (or won't) do so on their own, than bottle it up.

    But the internet is good about this type of thing. It holds people close enough to know other people ... but holds them far enough so that the potential "backlash" isn't felt as deeply as it was in a face-to-face situation.

    Rambling I know. Just know that you and Mrs. Spit and the rest of my inspiring ALI friends were all in my thoughts last Friday.

    xoxo
    Em

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  10. @ Mel: I see you're doing your part in making sure they find this one, lol. Thank you for the shoutout in the Friday Roundup! : )

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  11. i found my way here from stirrup queens.

    the world is so surprisingly small. a fellow babyloss mom i met through blogging friended me on facebook, and we realized we already had one mutual friend, who had nothing to do w/ the online babyloss community, she was simply a college friend of the woman's sister, and the wife of one of my co-workers.

    i was also friended by a babyloss mom whose brother, it turned out, was one year ahead of me at my high school.

    i generally use filters on facebook, as i know most of my IRL friends are tired of hearing about my son.

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  12. Your family's responses and reposts are so touching! I'm so glad you were able to share your remembrance of your daughter with them. FB certainly has its drawbacks, but it is an effective way to get the word out among family and friends.

    What you wrote about kick counts was really interesting--I had never heard about that and if I ever get that far in a pregnancy I will definitely be aware, thanks to you.

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  13. Such an amazing post. I feel like I have a million and one things to say, but I need some time to digest this all. So I’ll just leave you with

    I agree with everything you’ve said here. 100%

    And your post and your link to Mrs. Spit’s call for a riot reminded me of how many times I’ve told other babylost moms about how the MFM specialist who delivered the twins just kept saying, “Don’t worry. You’ll be back. This won’t happen again,” and said they had similar platitudes thrown their way.

    Why didn’t I get the memo that my first pregnancy was just a dress rehearsal? Why is there an assumption that there will be a next time?

    Because, clearly, that’s not always the case.

    Kudos to you for coming out on FB and hurray for your family rising to the response.

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  14. Awareness is so important. If it can make one single person change behaviour, or seek help when they wouldn't have otherwise, then it might save a life. And that is HUGE.

    I volunteer for an ectopic pregnancy trust that raises awareness - even amongst doctors who are often sadly ignorant about it. Yet it still kills women in 2010 in developed countries with good health systems. It makes sense of my own losses, and it saves life. The importance of awareness and knowledge cannot be underestimated.

    As for the IRL vs online blur - as I become more confident in my own skin, I find I'm less worried about it. Though I still use a pseudonym.

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  15. I cannot let my worlds collide. I spend too much time bashing the Pregnant Fertile Bitch at the office.

    I did the update too. It always surprises me who says something and who does not.

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  16. reminded to come here from Mel's Roundup...What a wonderful, thoughtful post. I'm so glad your status update had a positive effect.

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  17. Thank you for sharing this thought provoking post. You've made me think. I also posted something on FB about our recent loss and was touched by comments by friends.

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  18. Coming from the roundup and I wanted to tell you what a wonderful post this is, or to go another route "well said dude."

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  19. Great, great post. Loved all of it. You (and Mrs. Spit!) have such a talent with words.

    Fortunately, my FB and my blog life have not collided. I have a few blog friends as FB friends but not many.

    I have found a surprising amount of support from FB. It is funny how a random comment on a pic from on old friend can turn a day around. Or, to be really cheesy, turn a frown upside down. I did the same on Oct 15 - copied and pasted a blurb about Pregnancy & Infant Loss awareness. I was surprised at the number of people who commented about their own lost babies - friends who I didn't know had experienced loss.

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  20. I try to keep my facebook and blog very, very separate. My blog is my space, and only 2 IRL friends know about it. Facebook is a public space - and I may share joy and sadness there, it's not someone I am comfortable discussing the detailed facts.

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  21. This was a well-written post! I found my way here through the Friday Round-up. You have given me a lot to think about and I am definitely going to research the kick-counter when I get pregnant (I can't bear to say if).

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  22. well said.

    re: small worlds in blogging. yep, i've experienced that on your blog, actually! :D)

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  23. yes, Mel said it as well as any of us could.

    I think that whatever attention some posts get on Facebook or our blogs is good stuff....because when people are reading or seeing something that makes them think or reacess their position or even the thought about HOW they feel about something it's a good thing.

    the reactions that you got for the Facebook status is enough to make me believe that...most of them made my eyes well up. HUGS ...thinking of you.

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  24. Great post covering many aspects of the facebook thing.

    I'm glad you did the status update thing that day. I'm gladder you got a good response.

    I do feel a bit cynical about the facebook activism.

    Great stats/comments on various causes vs awareness/funds.

    I am going to go look up kick counts now.

    Yes, it is weird having all those groups together. I think that may be why fb scares me and I hardly write there.

    Bea

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  25. Great post covering many aspects of the facebook thing.

    I'm glad you did the status update thing that day. I'm gladder you got a good response.

    I do feel a bit cynical about the facebook activism.

    Great stats/comments on various causes vs awareness/funds.

    I am going to go look up kick counts now.

    Yes, it is weird having all those groups together. I think that may be why fb scares me and I hardly write there.

    Bea

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  26. Stopped by after seeing the shout out on Stirrup Queens. Wonderful post, people are amazingly surprising at times aren't they? I also did that fb update and was glad to receive similar responses.
    I remember way back when I started to blog how you stopped by my blog and we had a laugh about our similar blog titles, but different paths we were on. Kind of scary to think how similar our paths now find us! Another reason for as you mentioned the need for increased funding and research on infant/pregnancy loss.

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