Friday, May 24, 2013

Dignity & Compassion

There was a story in the news recently in which a woman delivered her stillborn baby at home and after wrapping the baby in blankets, concealed the body in a plastic bag on her balcony. It's a complicated, heartbreaking story on many levels (and not the first time I have heard of such a thing happening. Another babyloss mom blogged more eloquently about a similar story here.). The mother, who was originally acquitted of concealing the baby's body, must now stand trial again. From a legal standpoint, it's a mess. It's hard for me to read about, and not just because of the legal acrobatics.

The part that I focus on is the part she and I have in common, namely, we both delivered stillborn babies. If you have never been told that you will have to deliver your child's dead body, you cannot even begin to comprehend what that experience involves. And if you have never lived another person's exact life, it is impossible to judge them on their decisions. The best we can hope for is to try to understand.

Why am I defending a mother who seemingly treated her child's body with such contempt? Because I feel like I did the same thing.

When I was in labour with my daughter, I was incredibly frightened. All was well and she arrived safely. But I'm still in awe of how unreasonably scared I was, and it was only the skill and personality of one nurse that got me through it. Three and a half years later, having not given much more thought to my daughter's birth, I found myself at the end stages of labour again, but this time being told that my baby had died. There are no words to describe the terror I felt. I've written a lot about it and still haven't come up with a single adequate word.

The next part of the story is difficult and complicated. I didn't look at him. I didn't hold him. When the nurse offered to leave him in the room with us or take him away, I had him sent away. I never asked about him again. In my mind, I completely rejected him and failed him. What happened to his body before we received it back in ashes, I will probably never really know. We have a few photos and it looks like he was well cared for when they were taken but I will always wonder. I have heard other people's stories where they thought their babies were being well looked after and it turns out they weren't. My own story makes me feel like not the world's most amazing mother. In the context of a stillbirth, the story should go that we took good care of him, that we carried out our parenting responsibilities lovingly, from the moment he was born until it was time to say our final goodbyes. It didn't happen that way. Not even close.

Compassionate people defend me and say you didn't reject him, it was his death you were rejecting, you were crazy with shock, fear, grief. I am given this message regularly and I am grateful for that, and yet, compassion towards myself is hard, hard work. But when I hear this woman's story, I truly feel compassion for her, and sometimes, some of that magical, elusive compassionate fairy dust sprinkles onto me. Maybe if she had been treated with dignity and compassion from the time she was born - and details about her story make me think she wasn't - she wouldn't be in this situation.

My daughter's labour was quick and I was told that Toren could arrive even more quickly because second babies often do. I think about the woman in the story and imagine a situation where I deliver him unexpectedly at home, on my own. I remember how deranged with fear I was at the hospital and how I rejected him. What would I have done if I had been in her situation? I don't know. Nobody knows. I can speculate because of what I know about myself and the state of my mind when I had him. I can speculate because I remember how overpowering the fear was. Because it didn't actually happen to me, this speculation has very little value and really doesn't help anyone. But there is an unavoidable feeling of "There but for the grace of God go I."

Right now there is a global movement to break the silence about stillbirth, but when I think about how people are judged for the insane things that happen to them in their lives, I understand the silence. I want to hide in the safety of that silence too sometimes. Often. I judge myself and imagine others judging me the same way. It is so hard to speak out. It is hard to tell my story. It is so hard to ask others to speak out and tell their stories. There is so much misunderstanding about stillbirth. I will keep telling my story whenever I can but sometimes I really can't, even though I know that the silence is a false comfort.



Sunday, May 19, 2013

BC Bereavement Day

Today we participated in BC Bereavement Day at our cemetery. We had signed up to plant "memory seeds" for Toren. We arrived early and laid flowers in the Infants Garden, as we are used to doing now whenever we go there. Our daughter picked wild buttercups from the lawn and created little bouquets to lay on some of the babies' stones. As she chose which stones to decorate, we read her the babies' names. When it was time to go plant our seeds, she picked a little bouquet for herself and we made our way to an area where the BC Helpline folks had set up a sign-in table and some banners. One banner was for the BC Victims of Homicide which has made a very deeply grooved place in my heart. We were given a "seed heart", a heart shaped piece of paper containing seeds (very cool!) on which I wrote Toren's name. We were also each given a black ribbon pin. All the seed hearts were planted together and we are looking forward to going back and seeing the flowers. (The lady from Kearney Funeral Services who was coordinating the event said if the flowers don't bloom, she will go back and plant some, whew!) Afterwards we watched as some of the participants released doves. The doves didn't seem too stressed out. What do I know. I hope they weren't. One of the things I liked best about the event is that no one tried to attach any particular meaning to any of the activities. People were given the freedom to make their own meaning from the loss of their loved one, or to simply participate in honour of someone they love who died. The rain held off and it ended up being a beautiful day. A lovely day to honour our baby.

















Friday, May 10, 2013

Wednesday, May 08, 2013

Happy Birthday, Lachlan

Hi Lachlan

I don't know if you have internet where you are. I feel stupid wishing you a "happy" birthday when you are not here to celebrate and we all know you would want to be. Hard to believe you will have been gone from us 5 years in September. Someday they will find a cure for cholangiocarcinoma, and all these cancers, and no one will have to suffer the way you and your family have. I'm sorry your death was so hard. Your mom emailed to let us know they're going to Barcelona for your birthday this year and Kirsty and the family will be having a birthday cake, as they do every year. Your parents have been such a wonderful support to us since Toren died. It's strange to me that your mom and I have both lost sons much too soon. It's impossible for me to begrudge your parents the time they had with you because it was far too short. It's so brutally unfair. You should have had another 40 years. It sounds crazy. You should have had more years ahead of you than you got to live.

Ikuko misses you so much. I don't think she gets the support she needs. She joined a "young widows" support group briefly, but the women there were in their 50s (also too young), not their 30s like she was when you died. People say the most unbelievable shit to her, Lachlan, it would drive you bonkers. I think one of the worst is that she's "lucky" you two never had kids. It's such a cruel and ignorant thing to say. It just breaks my heart. A child would not be a cure for her grief (there is none, nor is one needed), but it would be a joy alongside her sorrow, and for all your family too. I'm so sorry you two never even got to have that conversation. To be diagnosed on your one year wedding anniversary...I don't even know what to say about that. No day is a good day to receive a cancer diagnosis, but why that day? Exactly one year before, we were all in Hawaii celebrating such a joyful occasion. Pete still has the Hawaiian shirt he wore to your wedding. And we went on that cool whale watching trip where, I think we can all be honest about it now, that cowboy zodiac captain got a little too close to the whales. It was nice to see them so close but. Not good for the whales. And he took us into that cave! One big wave would have meant serious trouble. But we got to drive by the wedding chapel and see from the water where you were married. That was pretty neat. And all the snorkelling we did...Anyway, we try to be a support for Ikuko but it's never enough. She & I talked about going to Tofino in September. Maybe Stacey & her family can meet up with us there. We went with Ikuko to Sooke last year, back to the beach where we scattered your ashes. It's where I started this blog, so thanks for that. You have always been one of my favourite writers and your writing has been a big influence on me. Ikuko & I left the group on the beach and hiked up to the other spot where we went with just your family and first opened your box of ashes to scatter. What a terrible moment that was. Also beautiful. It makes me cry to think of it now. It was such a special honour to be there with your family. I think seeing and handling your ashes made it that little bit easier for me to handle my son's. We went back and just hung out in silence, watching and listening to the waves meet the rocky shore.

I've been noticing that nobody has been referring to you as an "angel" since you died. Maybe they have and I just haven't heard it. When Toren was born, he immediately went from being a baby to being an "angel". I'm glad you got to stay "Lachlan", just you, a person, a quirky smart funny artist son brother uncle husband friend . My Nana hasn't been referred to as an angel either since she died at the age of 92, not to my knowledge anyway. The truth is that I don't think of our baby as an angel and I don't like it when anybody calls him that, but it's hard for me to correct well-meaning people. I also sometimes wonder if it makes it easier for some people to not see him as a person who died, and therefore to dismiss his life and to dismiss our grief. I'm worried that some people use the euphemism "angel" to perpetuate the stigma around stillbirth, and that maybe it's one of the many reasons preventable baby deaths haven't been eliminated, or even reduced. Angels are nice, who wants to eliminate that? Many babyloss parents refer to their babies as angels, and they should do what is right for their families. If they choose it for their own child, that's as it should be. I just wish people wouldn't presume to call our baby an angel. He was a sweet little newborn baby. He's our family member, a person who died (much much too soon). He can't speak for himself, never had a chance to grow up and decide for himself about life's mysteries. We are the closest people to him and so it is our privilege and our responsibility to speak for him.

Oh no I just burned the barley for our soup writing this! I think the pot is ruined now. Shit. Is it because I said that thing about angels?? Luckily, I don't believe in karma. Still, it was the last of our barley and I liked that pot.

Lachlan, I'm sorry I wasn't there for you more when you were dying. We got to see you in May for which I am forever grateful. We could see how hard everything was for you, and for your family. I'm glad you got to see our daughter's photo, and a video, from what Ikuko tells me. You died just under a month after she was born. It was such a shock when I found out you had died, even though you had been trying to prepare us through your blog. I was much more afraid of death and dying then. It has impacted everything. I'm playing catch up now. When Phil called us to say goodbye a week before he died, I was a little more prepared. Not that I wasn't grief-stricken - I ran to my bedroom and screamed and cried into the pillows after his brother called to tell us - but I knew that I needed to actively grieve. It wasn't until Toren died that all the defences were completely knocked down. I can't avoid grieving now even if I thought it would be a good idea (which I know now, it's not). I hope it didn't make things worse for you, my fear of death. At the time, I didn't want you to think I had given up on you. And I didn't want to say goodbye.

I have to go track down some photos now to include with this letter. And boil some macaroni for soup. Thank you so much for your friendship. It's as strong now as it was when we first became friends over 20 years ago. I know we argued sometimes and I'm sorry for that, but it was part of being friends and wanting the best for each other. I maybe didn't understand that fully at the time. The most important things about our friendship remain unchanged. I just wish we could still hang out even though, I'm sorry Lachlan but I still don't love playing hacky sack.

I love you and I miss you, my dear friend.
xo



  





Tuesday, May 07, 2013

Dear Frightened Woman,

You approached a grieving parent, a friend of mine from my support network. You told her she should "warn" people before telling the story of her daughter who was stillborn. You mentioned a woman who had to leave the room, a woman whose daughter was in labour. The kicker is, you sincerely think you are doing the world some kind of service, but the opposite is true. And here's the worst part - you don't even know it!

But we do.

Our families' stories upset you. And so they should. Our stories are upsetting - mostly to us. If it makes you sad to hear them, that's because it is sad. We don't tell our stories to upset people. We tell them because we love our children, we are proud of our children, we need to share our experiences, we need support, we want to help other families, we need to break the silence. We no longer live in a place of ignorance. We tell our stories because we have to. Your fear spreads fear and makes you lack compassion. Did you even pause to consider the feelings of a grieving mother? Your ignorance is hurting people. Does that even concern you? Please learn to practice mindfulness before you speak to anyone vulnerable, ie. anyone, but particularly when you know you are speaking to a bereaved parent.

Here is a simple guide for you (it's not a complete list but it's the best I could do on the short notice my anger gave me):
  • Stillborn babies are not shameful secrets. They are people who died much too soon.
  • Bereaved parents have a right to tell their stories.
  • Bereaved parents are almost never looking for advice from people with no dead children.
  • Try to be part of the solution, not part of the problem.
  • Get support for your own issues. You might not be ready to face everything and that's fair enough, but try to find the courage to take maybe one step towards it. Courage means feeling the fear but doing it anyway.
  • The stigma of stillbirth harms everyone. Any stigma harms everyone.
  • Life doesn't come with a warning and neither will our families stories.
  • At the end of our lives, whenever that is, we all die. 

Sincerely,
Toren's mother, Andrea

ps. For further reading, please see what Oliver's mother had to say on the same subject: It's Only Funny If You're A Mom - When Your Life is a Trigger Warning.



Saturday, May 04, 2013

DSM5

Big news in the world of mental health treatment and research:


The online bereavement community is abuzz with this topic. Read Dr Joanne Cacciatore's comments here: In Not-So-Loving Memory of the DSM5




Friday, May 03, 2013

Surfing & Stillbirth - A Grief Journey

I'm not a surfer but I love surfing. I think it started when I saw the movie Riding Giants. Since then, Pete has tried surfing when we've been to Hawaii and enjoyed it. I'm fascinated by it, both as a sport and an art form. The strength and balance required, and also the grace and beauty of it. It's like watching modern ballet on water.

This gorgeous video was made by an artist and surfer whose daughter was stillborn. It sounds like making this video, as well as surfing, have been outlets to express his grief, which he does so beautifully. In the video, we see him making a small surfboard "in memory of our daughter, Willow, who we will always long for in the deepest places of our souls." There is some great surfing footage and I can picture him teaching his little girl to surf. It would have been one of the many wonderful ways they would have spent time together, learning from each other. He can't do that, so he makes a surfboard in her honour instead. It can never be enough, it can never replace the loss of his beloved child, but it's beautiful nonetheless.



Wednesday, May 01, 2013

Is/Was


He is loved.

     He was wanted.

He is my child.

     He was alive.

He is dead.

     He was born.

He is present.

     He was meant to be.

He is missed.

     He was stillborn.