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Ten Years Later

FROM A PARENT'S POINT OF VIEW

by: Debbie Gemmill (c) 1994
Reprinted with permission from GIS Reflections Volume 29, January,1994

I attended a support meeting a few months ago. I've been to many, but this one was different. This one was for families who had lost babies to SIDS five or more years ago. I was telling someone about this meeting, about how I was looking forward to it but also wondering how it was going to feel to take a look at the last few years. "Sounds like a pity-party to me," he said. A pity party? Rather than try to explain the potential value of such a gathering, (won't it be nice when we can stop explaining SIDS and grief to everyone?) I made a quick exit and reminded myself that there's still a lot of work to do.

The meeting was in the same living room as that very first scary meeting John and I had gone to after our seven-month-old Tyler had died. Looking back, it's a miracle to me that we managed to get ourselves there; we were living. driving and thinking in a grief-induced fog. I remember walking into that room thinking how odd it was that we should be in a room filled with parents whose babies had died. This sudden, unexpected event had made us members of a group we never thought we'd belong to.

The room looked the same; there was a box of tissues on the coffee table, SIDS literature on the kitchen counter, the comforting smell of coffee brewing. Even many of the faces were familiar. We'd all met in this room at the lowest time of our lives and now here we were taking a look at ourselves and at one another, trying to see where this tragedy has taken us.

Our discussion started cautiously and reminded me of that first meeting. How hard it had been to introduce myself and then follow with, " ... and my baby just died. " I could hardly get the words out, and even when I heard my voice say them, I couldn't believe. And now all these years later, it felt strange to hear my voice say, "and my son died of SIDS 11 years ago." ELEVEN years. I felt the same kind of disbelief from the other SIDS family members as they talked of how long it had been since SIDS had taken their children's lives.

I think mostly we're all a little surprised. I don't think we really expected to survive our babies' deaths.

There were a few parents and grandparents I didn't know. In fact, some of them hadn't been to support meetings at all. For some, it had been a dozen or more years since their baby had died. It was almost as if time had stopped for them the moment they realized they had lost their child. That same tearing pain and anger was alive and brimming over all those years later. Somehow it had stayed inside them, taking up the space that the good sort of memories fill after a while. For these parents and grandparents, this was the first safe opportunity they'd had to talk openly, not only about their precious children, but also about the way grief had affected every part of their lives. After this long, one mother told us, it's pretty hard to just bring it up to anyone. People think you should be over it by now.

Over it...well, we all agreed that you don't get over the loss of a child. At best, you learn to live with it, around it, alongside it, once in a while underneath it. One thing was absolutely clear to me as I listened to the folks in this room...you can't ignore it and hope your pain will go away. Those who had tried turning their backs on their pain found that grief was waiting for them...in every direction, sometimes silently, but always, always there.

Those of us who had been fortunate to have had access to other SIDS families agreed: it makes a huge difference to be able to talk to someone else who has had this same experience. "I know how you feel," only helps if you know it's true.

So just how were we five or more years later?

Most of us admitted that life, indeed, had gone on even when we had been certain it would not, could not. I felt a trace of surprise among us as we found ourselves talking about our jobs, Little League, soccer teams, home remodeling. To an outsider, it might have appeared to be just a gathering of friends. And, of course, that's what it was. But these were friends who had met under the saddest of circumstances.

All of us spoke of our babies as members of our families; we shared photographs and family traditions which help keep them a part of us. We talked about celebrating the birthdays of our dead children-- "Now where else could I talk about that?" one mother said. Those with subsequent children recalled the anxiety and the joy surrounding their births and infancy. We questioned the often-heard compliments: You are so strong. You have done such good things with an awful thing.

We didn't think we were so strong. We felt as if we'd just hadn't any other choice. Each of us handled our baby's death differently. Some of us don't remember making a conscious decision to survive, but it seems that we have, nonetheless. And as far as those good things, well, for some of us doing SOMETHING, ANYTHING, was simply better than fighting with that hurricane of emotions that left us dizzy. Our level of involvement ranged from attending meetings to lobbying for SIDS legislation. All of us felt that it had helped in some way to get involved.

We considered how our lives might have been had our children lived. Where would we be? What would we be doing now? Some had moved from their homes and communities following their SIDS loss; some had changed jobs. Each of us had made some changes, some voluntary, others forced into change by outside influence. We certainly were not the same people we had been, but in what ways?

Overwhelmingly, we agreed that we appreciated our lives more. We take less for granted and though we're not perfect, we try not to get crazy over the small stuff. Tender things make us cry and injustice makes us angry, not such unusual reactions but somehow magnified, it seems, by the fact that we have suffered the loss of our children. We are a bit overprotective of our surviving and subsequent children; we admit to listening to all sleeping people breathe.

We absolutely agreed that meeting with one another in those early hours or days has made all the difference. And we agreed that as long as there are SIDS families without access to peer support and accurate SIDS information there is still much to be done.

So much was the same at this meeting Photographs of chubby-cheeked little ones passed along with the tissue box following. Sentences were interrupted with hugs. Information about SIDS was interspersed with recollections. Far from being a "pity-party", it was instead, in a way that perhaps only we can understand, a celebration of life and survival and friendship. We are not the same people as we were or as we might have been had our babies not died. But here we are. We have survived.

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