Monday, February 24, 2014

Parenting Duties

Drawing by Toren's sister.
It was a busy weekend. Friday Peter & I went to a local hospital to tell the story of Toren's birth to a small group of about 10 newly-qualified nurses. I was very nervous going into it, regretful even, but it turned out to be better than I expected. Everyone was sensitive and respectful (which I had expected), and I felt better about sharing my story rather than worse (which I don't always expect). You would think that after 2 years of writing and talking non-stop about this stuff, I would be able to keep it together. Nope! Tears within the first 10 seconds. Several of the nurses also became tearful. So did Pete. Fortunately the mindful facilitators had provided tissues.

I was glad Pete was there to give his perspective. There is always so much focus on the mother that the father is often left out of the discussion, to the detriment of them and their families. I don't like when people say to me "It's harder for you because you carried him." First of all, don't tell me what's "harder" or "easier" for me, and more importantly, Pete lost a child just as much as I did. That was one of the messages we wanted to get across - it's not just 'How is your wife doing?' but also, 'How are YOU doing?' We also talked about connection - how important it's been for us to remain connected to Toren. When I was pregnant, we were very much connected to him. When he died, that connection was traumatically severed. Nurses are in a position to help start the process of reconnecting. Tough job for sure.

As usual, acknowledgement was a huge theme. Acknowledge the baby, acknowledge the father, acknowledge the grief, acknowledge the trauma. Also - acknowledge the extended family. I've been honoured to attend memorial services for babies, and sometimes when I say to a family member "I'm so sorry for the loss of your grandchild" or niece or nephew, the person looks at me a little surprised. They probably don't often hear the loss framed in terms of themselves. I know family members find it difficult, for a variety of reasons, to identify as a bereaved grandparent, uncle, etc. I think this makes it difficult for everyone all around. So we made sure to mention to include family members when you are offering condolences, taking photos - generally supporting the family and helping them create memories.

One part of me worries that these little sessions do more harm than good. Of course it's good for healthcare workers to hear these personal stories. Everything starts from our stories. But it's not really a training session. Not what I would consider a proper, effective training session. I know some hospitals don't do any training whatsoever for nurses so anything is good. But it just feels so urgent, the need to have as much as possible in place before families come in to have their babies. These new nurses are already on the wards, working with families. They are learning so much of it as they go. It's not their fault, it's how the system is set up. Everyone is doing the best they can. But it concerns me that newly-bereaved, traumatized families are being used as a training ground. Their time in hospital is often their only time with their baby. It's so time-critical, and it has to be as right as possible. I guess I'm thinking this is what happened to our family.

Well, we have to start somewhere.

Afterwards, the nurses told us how much they appreciated us coming in and telling our story and how helpful they found it. It's hard to describe the feeling this gives me. Probably something to do with that love thing again.

The next day I attended the Perinatal Services BC Conference, "Healthy Mothers Healthy Babies". I was part of the Still Life Canada team presenting, "Bereaved Parents Break the Silence of Stillbirth". On a program primarily concerned with the birth of live babies, stillbirth was given a place. They understand that if you work in a job that involves caring for mothers and babies, you also work in the field of grief and bereavement. Not everybody gets this, which is why it was so amazing for them to include us. The SLC research team originally applied to do a poster presentation (which means you are out in a lobby or hallway with a poster you hope will draw the attention of delegates in between sessions), and was subsequently invited to do a 20 minute presentation. Our talk was a follow-up to last year's SLC conference "You Are Not Alone: Bringing Stillbirth Out of the Shadows".

Us on the conference program
I didn't realize that we would have to sit through two other sessions first, one about statistics related to stillbirth and the other about contraception and spacing one's children. Obviously I am listening from a different perspective and I did have to leave briefly at one point because it all got a bit too cold and clinical for me. Sometimes, when I hear my experience as Toren's mother being reduced to numbers and harsh medical language, I feel that he is being taken from us again. In certain circumstances, I need to isolate myself for a time to find him again. And cry.

Then it was time for us to go up. We had 20 minutes to cover a lot of ground. With weeks of collaboration and many emails, run-throughs and iterations, we covered what we thought was important. First the moderator introduced the four of us. When I was writing my bio, I thought, "Oh man, some poor person has to read this out loud!
"Andrea has a beautiful daughter at home and a beloved baby boy in her her heart, her thoughts and her actions. Her son, Toren Edward, was stillborn due to an umbilical cord accident in January 2012. She grieves him through remembering and through helping others."
Each of the speakers in our group had something similar within their bios. At one point during these introductions, the moderator stopped and looked at us and said it was hard to introduce us because she felt that she was not doing justice to our stories. For me, that was amazing - to have her pause and acknowledge that what was happening in that room was something special. The normal conventions and etiquette of conference behaviour no longer apply. You must deviate from the usual script. You can pause and be human. She won us all over instantly with that gesture. I just thought it showed so much compassion.

My job was to cover the history of Still Life Canada. In 3 slides. Two minutes and 12 seconds. Eep! I started with Toren's story and worked my way out from there. It was all going swimmingly, but I forgot to factor in the crying time! Yes, after practicing these 3 slides about 800 times (give or take 100), I broke down in front of a very crowded and pin-silent room. The audience was made up of doctors, researchers and healthcare professionals. They had just sat through two other presentations filled with numbers and medical jargon, and if memory serves, none of those other presenters burst into tears. So I paused, we all paused, and took some deep breaths. I grabbed my handy dandy tissues and I continued with my talk. About a year later, I made it to the end of my slides. I took my seat and felt...ok. Fine. Pretty good actually.

Me white-knuckling my notes in front of an attentive,
respectful & compassionate audience. Photo by M. Farrales.
At the end of our presentation, I was feeling really calm, relaxed. We had done it. We did what we told bereaved parents we would do - tell their stories in the hopes of improving care for families coping with stillbirth. We take very seriously our role as care-takers of these stories. We concluded and opened up the floor for questions. The audience burst into applause and everyone rose to their feet to give us a standing ovation. Cue the tears again! So emotional. The moderator came back to thank us and named each of our babies. Yet another display of sensitivity and acknowledgement.

It was fantastic to feel that support. You think you're coming to tell people things they don't want to hear, and they tell you they want to hear those things and they need to hear those things. And they show that they stand for you and with you. Indescribable.

Please go to the SLC blog to read Jaime's excellent and more detailed description of what went on - Standing Ovation. Her role was to read actual quotes from bereaved parents who attended the SLC conference last year. We all agreed, she had the toughest job of the four of us. To be the voice of parents. It was incredibly moving.

Sunday was a day of rest. I was exhausted and quite tearful throughout the day. This is my usual reaction after I've done some intense work. I'm ok with it. Getting used to it. There will be many other opportunities to talk about Toren in these types of settings. I will never, ever look forward to it. But I do look forward to seeing change happen because he lived and because he is loved. This is one of the ways we will carry his spark forward to cast its light on the world. It's not the same as him just being here and doing it for himself. He can't, so we're doing it for him.

Christmas Day, 2011.
Twelve days before he was born.

Sunday, February 16, 2014

How Was Your Day?

Every day with our daughter is a good day, the very best.

Every day without our little boy is a bad day.

The very worst.