Sunday, December 4, 2011

To go or not to go?

I've debated what, if anything, I should write about this.

If you're read my blog for awhile, you'll know that attending meetings of a local support group was an enormous help to both dh & I in the days following Katie's stillbirth in August 1998. Although blogs didn't exist back then, I was lucky enough to find some daily support on the Internet -- and a support group not too far from where we live that met twice a month. Online support was my daily lifeline -- but meeting face to face with other real, live bereaved parents, & getting a sympathetic ear, suggestions and even hugs from our wonderful facilitators -- both bereaved mothers as well as NICU nurses -- was an invaluable part of our healing.

After a year, we felt we'd progressed sufficiently in our own grief journey to be able to help others, and so we began training as facilitators. We stayed on for the next 10 years, welcoming dozens of moms & dads, telling our (Katie's) story, listening to theirs (as our facilitators had done for us), offering the benefit of our experience where we could.

We facilitated our last meeting in December 2009, almost exactly two years ago. We stepped down because we felt that 10 years was long enough and that it was time for someone else to take on the responsibility. Dh, in particular, was feeling the toll of listening to one too many sad stories after another.

But, truth be told, there were other reasons. For one thing, the clients had changed... or maybe we had. Whatever the reason, it suddenly seemed like the clients were getting younger & younger -- & I started feeling older & older (& crankier, lol). The generation gap yawned like a chasm before me. A growing number of our younger clients (some of them young enough to be our kids, eeekkk) seemed more self-centred, less interested in listening to the other clients and providing mutual support. There were more & more nights when clients were monopolizing the discussion -- or, if not talking too much before the group, holding side conversations with each other instead of listening to whoever was talking. There were many nights I could see people surreptitiously text messaging under the table -- or, worse, leaving their cellphones on & then taking calls in the middle of the meeting (!).

And the organization had changed. The original founders of the group had gradually left -- many of them burned out from trying to keep the organization afloat & funding rolling in (dead babies being a far less popular cause in the public mind than breast cancer or heart disease). Unfortunately, many of the original values, principles and practices seemed to go with them -- or began slowly eroding -- lost in transition.

Soon, there were people on the board of directors and in the office who had not been around when we first joined the group, who did not know the founders or why certain things were done the way they were. Money was a continual problem, as it always had been, but not all of the problems related to money. Events were less well organized, with less attention paid to the fine details. Volunteer training became more sporadic, less hands on. Sometimes, I found myself annoyed by directives from the office concerning matters that were probably best left to each group & facilitator to decide. At other times, we felt that we were operating in a vacuum & not getting the level of support we needed.

Since we left, there have been more changes. Greater responsibilities & expectations have been placed on the facilitators' shoulders.

Now, I'll admit that I am a person who does not accept change easily. I know that sometimes, change is necessary, and that financial constraints make it difficult to maintain every service, every tradition and every position.

But it's not just the changes themselves but the way they were carried out that have most upset me, and many others. While I don't want to go into all the details, over the last two years since we've stopped facilitating, people we know, love and respect -- people who have served the organization well for many years, made enormous contributions, and were beloved by many, many volunteers & clients -- have been abruptly removed from their paid or volunteer positions in the organization -- often with little or no reasonable explanation given. (One lost her part-time job just days before the anniversary of her baby's death. You would think that an organization devoted to serving bereaved parents would have thought to check out that critical detail first before dropping the bomb.) Some volunteers who have voiced their displeasure or asked too many questions have been told that perhaps group was not the place for them any more. All this, from an organization that is supposed to care for and about people at the most vulnerable time of their lives.

To say that I am saddened, even sickened by what has happened, to people I admire & respect, and to an organization that has meant so much to me these past 13 years, is an understatement. Dh is furious, & has vowed that we will not give them one more penny of our money until things change. (Until just recently, we had been making generous monthly donations for about the past decade. We also raised about $10,000 for the group over the years through one of our workplace philanthropy programs.)

Many of our friends, especially those who have also volunteered with the organization in some capacity, feel as we do. Others who are still involved are dismayed by what's been happening --but (as you might expect) feel a tremendous loyalty to their clients & do not want to see them hurt any more than they are already hurting, through no fault of their own. The group is not perfect -- but what would parents like us do without it? Newly bereaved parents don't know what the group was like before, or care about the current internal politics. They may be getting an inferior experience compared to what we had, but they don't know that. They're just glad that someone is there to listen.

I hate to think about what the group has become, versus what it once was -- but I also hate the thought of no group at all.

What a mess!!

So here's my current dilemma: The group's annual holiday memorial candlelighting is coming up soon. This is an event that both dh & I have loved & always looked forward to (I've actually skipped or skipped out early from my office Christmas party several times to attend). It has been a huge part of our holiday celebrations for the past 13 years -- a time that we can set aside the hustle & bustle of the season, meet up with our old friends & remember our babies together. I can't imagine NOT going.

At the same time, I can't imagine GOING -- facing some of the people who made these decisions that I do not agree with, and pretending that all is well. I'm not a particularly confrontational sort of person, and frankly, I think I would feel like a bit of a hypocrite being there. To go would feel like we endorse what has been happening, when we don't.

I don't know yet if any of our friends are going -- it certainly wouldn't be the same without them. Some feel as we do. Others may not want to disappoint their children, who have grown up attending these events & come to look forward to them. In our e-mails over the past few months, some have said, well, who needs group, we can always get together ourselves sometime. Yes, but we generally haven't in the past, and nobody has volunteered to organize anything in the near future.

Another former facilitator has kindly organized an alternative event; unfortunately, it's on a night when we are otherwise engaged.

(We will be facing the same dilemma in the summer, when the annual picnic & butterfly release -- another annual highlight on our calendar -- rolls around.)

I just feel so terribly, terribly sad that it has come to this -- that something that once gave us such comfort & a sense of belonging has become so tained -- a source of pain. It's another loss, on top of so many others that we (dh & me, and our friends, collectively) have endured.

I know this sort of thing happens in lots of group situations. I just didn't think it would ever happen in this one. Sadly, I was wrong.

I think we have made our decision -- but I still feel very ambivalent.

What would you do?


  1. Mmmm, that's a tough one. I hate change as well. I would probably skip this one coming up and arrange to do something else - maybe start a new tradition for yourselves. It sounds as if this to go or not to go question is only going to come up again.

  2. Loribeth, I love the new blog design, btw.

    What a dilemma. It is so heartbreaking to sit helpless by and watch changes being made to something that has worked for people. Particularly you who has watched it work for thirteen years.

    Personally, I would skip it this year. You can regroup after the holidays and see how big it felt to miss it, did it feel weird? I love the idea of an alternative event with the ones skipping this one too. Just some wine and appetizers or something. One thing I have to remind myself all the time is just because this time doesn't feel right, it doesn't mean that the next event will feel wrong. Sending love. xo

  3. Hmm.

    I think I wouldn't go. Mostly because I would be afraid if I went that the whole event would be tainted by how angry I was, and I wouldn't be able to remember the good times, if that makes sense.

    I'm sorry Loribeth. Really, really, really sorry.

  4. I am involved in a similar situation and hate conflict. However the cause remains important to me so I plaster fake smiles on my face and participate in events where I'm not in a leadership position. It's so sad that good causes get caught in human dramas. Best of luck to you: I know it's not an easy choice.

  5. To everything there is a season... maybe time to move on with gratitude for everything the groups has given you (and you it)and be willing and open to a new door appearing. Tradition and ritual connect us in comforting ways to the past and can still be carried out in a different physical location. xxx J9

  6. That is so tough. I really don't know. I must admit, I never got in to the group face to face type sessions. I only went to one, as we were strongly encouraged to go, but it just wasn't for me. But then I was lucky in a way, as when I was welcomed in to this club, I had all of these blogs to devour. It is such a shame what has happened to your group and I absolutely feel your disappointment.

  7. This is just hard, and I'm so sorry that the changes in the organization that meant so much to you are such that they are driving people away. And I'm sorry that one of your holiday traditions is now no longer a source of comfort.

    We never found a local support group, but under the circumstances you describe I don't think I would go. I would probably also sent the Board of Directors a letter outlining why, and their response would probably have a lot to do with whether I attended future events or not.

    I love the idea of an alternative event, too, of finding ways to keep in touch with your friends from the group.

  8. How dispiriting. I think I would go just this year, but let my equally dispirited friends know that I'll be there and would like to get together with just them beforehand or afterward (maybe the next morning or evening) so that we can all let off steam.

  9. Perhaps you and a group of your friends from there can do an informal candle lighting of your own?

    I'm sorry the group seems to have come apart. How sad for the newly bereaved who are only getting this end of it.

    I know this makes me sound like an old fuddy duddy, but, it does seem like some basic manners are a thing of the past, doesn't it? Texting during a grief meeting!!! Good lord, at least have the decency to step outside.