Monday, November 05, 2012

The Things People Say

Online, and in support groups all over the world where we have the "luxury" of having support groups, there comes a time when all grieving parents get to this topic: the things people say. It's been one of the most surprising things about this experience. Surprising and awful. Or maybe not so surprising if I think about it. People don't know what to say. And why don't we know what to say? Because when things are not talked about, nobody gets any experience talking about them.

Parents of a stillborn child choose not to talk about their experiences for a variety of reasons - they're in a social situation and don't want to bring people "down"; they don't want to cry in public; they don't want to be judged; and they don't want to have to listen to insensitive comments. Bereaved parents often preface their story about insensitive remarks by saying something like, "They meant well." or "People don't know what to say." or "They didn't mean any harm by it." I've been connecting with many people, online and in person since Toren was born, and it's so painful to hear the hurtful comments they have to endure, usually in silence. Until they get online, onto a private site, or to a support group. Private forums are busy with chatter on this topic.

In the summer, we went to one of our favourite coffeeshops and one of the owners said to me, "Didn't you guys have two kids?" Let's ignore the fact that this is a strange question to begin with. When I told him what had happened he very breezily said, "Oh well, next one". I still can't go back into that coffeeshop. I fantasize about going back and educating him about how babies are not replaceable - sometimes with calm, reasonable words, sometimes with a bucket of manure dumped on his head (when his mouth is open).

Well-meaning people will say, "Everything happens for a reason". It is one of the most painful and offensive things parents of stillborn babies have to listen to. All other thoughtless comments bow down and worship at the feet of this one. It's particularly hard if the parents go on to do good works in their baby's memory. No matter how many good works I do because of Toren, the world will always have been a much better place with him in it.

There is no formula for how to interact with a grieving person, just like there is no formula for how to live your life. A good starting point is to be truly present in the moment and approach things from your own experience. This means not resorting to clichés or platitudes. The only cliché that has turned out to be true for me is, "You find out who your friends are." (That is another post.) I have had people say to me, "It's not the same but when my father died..." They are sharing their experience with me in a genuine and sensitive way. I can work with that. In fact, I totally appreciate it. Also, try not to be too profound, either in person or in cards and emails. Let the grieving person find their own meaning, don't try to find it for them. And of course, even more important than talking is listening.

New Zealand Sands (Stillbirth and Neonatal Death Society) promotes a "three-point" model of care when working with bereaved parents in hospital, and I was thinking it could apply more generally as a starting point when interacting with a friend whose baby has died:

1. Slow Down: Don't try to rush the moment, however uncomfortable you feel. As Brené Brown said in her Ted talk: "Lean into the discomfort". It will be over soon (for you) and you will be glad you did because you will walk away having truly connected with someone. That doesn't happen often enough in life, and I'm pretty sure it's why we're here. Don't try to fill any silences with meaningless words. What you are talking about is HARD, so if you're feeling uncomfortable and completely unsure but you're being mindful and sticking with it, you're probably doing ok.

2. Active parenting: Parents of stillborn babies don't have a baby at home to take care of and raise but the need to "parent" is still very much present. Parents figure out how to respond to this need in the only ways available to them. It could be scrapbooking, it could be blogging, it could be going to the cemetery or a meaningful place every day. The best way to help them with this is to not discourage them from following their instincts, either openly or subtly. Never ask, "Are you sure you should be doing that?" or "Are you sure that's ok?" I have a friend who has a picture of her baby at her desk at work and someone asked her if that was a good idea. I'm still mad about that one. The biggest reason not to try to advise a grieving parent is - and I say this with love in my heart - if you have not lost a child, you have no idea what you're talking about. Never tell them, "Just live your life." because that is precisely what they are trying to do. It might seem strange to you, but for them it is part of a "new normal". It's healthy and necessary, and grieving parents all over the world do it. What you are questioning, they are probably going online, and to support groups, and talking about quite freely and happily (well, a sad happy) with other parents in the same situation.

3. Create memories: When someone dies, we turn to our memories for comfort. When that person dies before birth, a lot of the memory making has to happen afterwards. If you have something that can help parents with that, let them know. We are planning a memorial service for Toren but have precious few pictures, of him or of me pregnant with him, for our slideshow. Don't bombard the parents - very sensitively ask them if they would like whatever it is you have, whether it's photos or a gift you had bought for the baby. If they say they don't want it or tell you to get rid of it, don't! Hang onto it. They may at some point ask about it. Grieving parents are in shock in the beginning (days, weeks, months, there is no time frame) and might not know what they want until later. If the hospital would call me back, I could find out if they have more photos because of something our nurse said and because I know they hang onto things for parents for a long time. But that's another post (or probably another phone call, ug.)

So those are some thoughts to get us all started. Everyone is different but I think it's how you approach it that counts. If you are tempted to avoid (fake cheerfulness, avoiding the subject or the parents) or minimize (like my coffeeshop owner) or "self-soothe" (saying something for your own comfort, not the other person's), maybe think about why that is. Hurtful comments are always about the person saying them, but it's the grieving person who feels it.

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