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.

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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?)

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"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?