Tuesday, November 06, 2012

Ten Months

Ten months since our beloved son was born. I don't know if that's a lot of time or only a blip. Since then, I've lived in a sort of time warp. We're still in the first year of this yet I feel like I've lived a few lifetimes. I feel old, and the wrong kind of wise. People tell me I look good (I assume they mean considering everything that's happened), but if they could see me as I have truly become, they might not even recognize me. I hope to live a long, meaningful life but then again, it seems a long time to live without your child. I miss him terribly. No real words for it today.

Some of you know, we've been working with two other families to start a non-profit society called Still Life Canada to raise awareness about stillbirth and to respond to what we perceive as an important need in the community. If you go to our website, you will see that there is not much there yet. But you can put your email address in to be notified when it goes live. There is also a twitter account which is more active. We meet on a regular basis to figure out what needs to be done to achieve the goals we have set. Last night we met and talked about the conference we are planning for next summer which will bring together bereaved parents and the healthcare community. I hope to be writing more about that soon. We also talked about activities to get us through the holidays. We are all facing a normally joyous season without our babies and no one is looking forward to that. Joy is a tough sell at this point. We will invite other families we have met to join in.

The more I learn about stillbirth and society's lack of understanding about it, the more frightened I get about what our group is doing. I have heard some truly dreadful stories in the last 10 months. Some of the stories are about people's experiences in various hospitals across Canada, other stories are about how parents have been treated in the aftermath, by family, friends, strangers, and the healthcare system. In my mind, there is a huge problem out there that is not being addressed. One of the scary things is, nobody really knows it, except for the families who are suffering. One doctor we heard from said she didn't think she heard the word 'stillbirth' once during her entire medical training. I've had people ask me to explain what I mean when I've told them Toren was stillborn. I don't know why I knew what it meant before he was born but I've since learned that it is not a well-known term. We heard from one person who said that when she went back to work after her child was stillborn, the HR person said, "Really? No one loses a baby these days." The ignorance on this subject frightens me beyond belief. And that's just about stillbirth, never mind what I could write about how misunderstood grief is.

The last 10 months I've been busy educating myself about subjects I never thought I could be interested in. Here are a couple of topics I'm following at the moment:

  • The American Psychiatric Association is preparing to release the latest version of its Diagnostic & Statistical Manual of Mental Disorders (the "DSM" as it's commonly called) in 2013 and they are planning to add bereavement as a mental disorder. Americans in my situation could be diagnosed as having a mental illness. You can read more about that in this article in the New England Journal of Medicine. Not sure if the DSM is used up here in Canada but it's freaking me out. Grief is not an illness, it's not a disease, nor is it depression. It is a normal, healthy reaction to a life-changing loss. That doesn't mean people don't need help with it, but if you diagnose grief as something else, people will not get the help they need. The MISS Foundation is fighting this tooth and nail because they worry that the families they serve will be misdiagnosed and prescribed medication when what they really need is support. You can read their open letter to the APA here. Their DSM information page is here.
  • The International Federation of Gynecology & Obstetrics (FIGO) had their 20th world congress in Rome in October this year. Ending pregnancy-related deaths is their core mission. Their next congress will be in 2015 in Vancouver. A past president of FIGO is an obstetrician working here in Vancouver. The international community in the field of stillbirth is coming to Canada. Canada is so far behind in the care of families coping with stillbirth. This can't go on. Are Canadian parents going to be a part of that through Still Life Canada? You better believe it.
So that gives a little picture of why we're doing what we're doing. But from a personal standpoint - why in the hell are we doing this? Why can't someone else do it?? I have heard how awful parents get treated even when they stay under the radar and quietly try to cope as best they can. One woman said her brother told her, "It's been two weeks, get over it!" Her child died and even that child's uncle doesn't acknowledge what she has lost, what he has lost, what their entire family has lost. So many parents grieve in silence. And here we are, planning to grieve out loud and in your face. We are gonna get creamed. But we have to do it. There's no going back now. As I said to one of the parents in our group, what have we got to lose besides all our friends and a comfortable place in society?

Change is coming.

A grieving father sorts it out

Grief work - with hearts!

Toren's big sister does her own grief work & makes a flower out of hearts

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