Sunday, December 03, 2017

Tough Audience

I attended a talk by a woman who wrote about meeting the man who murdered her father when she was a child. She is incredibly brave and it was a very moving event, but after a while I found it so uncomfortable that I had to leave before the end. I think it has something to do with, when listening to someone talk about their grief, especially if it's a traumatic loss, I think I expect to connect more with the person and the story than I do, and then that disappointment gets added to the daily disappointment. I wonder if it's because stillbirth is just so weird, so unrelatable to anything else, that I end up feeling more isolated and alone. No other type of loss requires you to deliver your loved one's body out of your body. That doesn't make it "worse" or "better" than any other kind of loss, just different, with its own set of challenges. It's the most terrifying thing I've ever experienced and haunts me to this day, yet I still get asked why I think I have PTSD.

I had this weird horrible jealousy about the author's grief being validated. No one could possibly blame her for what happened to her family, or pressure her to forget her father and somehow replace him. I struggled through her talking about how it helped her to meet the killer, to find out about his difficult past, and to tell him about the man he killed and how beloved and missed he is. It sounded like it helped him be more remorseful, which in turn seemed to help the family (not in a vengeful kind of way). It was through an amazing sounding restorative justice program at the prison.

As so often happens since his birth, my thoughts slither to: what would be the stillbirth equivalent of this experience. Restorative justice. Any kind of relief and justice for a life never lived seems impossible. Would it help to meet with our doctors and talk about how the healthcare system is not set up to prevent babies dying at birth? About how pregnant women are so infantilized that their legitimate concerns are dismissed with eye rolls and jokes about hysterical motherhood and getting fat? About how the pervasive belief in "the power of positive thinking" means no one thinks a baby can die at 38 weeks which also contributes to maternity nurses not being trained to support families in sudden, traumatic grief?

I've heard enough comments about not participating in the "grief Olympics" to want to delete this post. But of course there are shared experiences and things we can all learn from each other when it comes to grief. I wanted to ask about her perspective now on trauma and grief as a child, and whether she felt supported during what must have been a chaotic time for her family. As a bereaved mother raising a bereaved child, I'm always interested in the opinions of those who are willing to share their lived experience. I feel like people rely too much on the concept of children's "resilience" rather than providing loving support, as well as accepting how individual grief and love are. And because the world thinks that children are not fully human because they are not fully developed, they don't always get treated with respect and humanity. Grief is so disorienting and confusing when you're an adult. As a child it must be downright frightening. I also wanted to ask about anger. Of course. A perennial favourite.

The first audience question was about the prisoner and I quietly packed up my things and left as she gave a very measured and respectful response about how the focus of her writing is on her own experience, not his. I couldn't stay and listen to her valiantly fend off sleazy questions about her family's pain, not when I had so often been asked to talk about my son as if he were a morbid source of gossip and fascination and not our child who died. I wanted connection and relatability but when it showed up, I had to check out. I'm a difficult audience. Impossible mostly.

A final note - her baby was in the room being looked after by someone and crying intermittently. I thought about how having a baby must be adding unexpected dimensions to the grief. Her father should be here to meet his grandchild. As the author was being introduced as "an important new voice", the baby happened to cry and the speaker stopped and smiled and said, "And another important new voice!" So true. It was a lovely moment. Everyone laughed. Except me.

Tuesday, October 24, 2017

Halloween

Well, there's no shortage of blog posts out there about Halloween and grief. Just google some version of that and you will see bereaved people coming out of the woodwork to express how difficult it is walking around at this time of year when the dominant culture is so entertained by body parts and blood and tombstones and death.  

We were at a community centre last weekend for our daughter's roller derby practice and it took a while for me to notice that on the windows, along with the paintings of bats and spider webs, there were red handprints. I blurted out to Pete, probably too loudly, "It's like a fucking maternity ward in here." So I will write a letter asking them to consider removing them. Do I tell my story or do I simply ask them to be less gory, which is not as effective and makes me look like a fragile mom who just needs to toughen up and lighten up and shut up? I guess some people would call it playing the bereaved mother card. It's also his story and I feel protective of it, more so now than when he first died. And why should I have to get people's attention in the most shocking way, why do we so often have to scream to be heard, rather than being able to just say, hey, consider how this hurts people who have death in their families. Even in non-bereaved families, I suspect children learn to silence how disturbed they actually are by all these morbid displays and the long-term impact of that exposure and lack of support for it. This is sometimes called "resilience" but I think it's actually an enormous problem. Turning death into a big cultural joke perpetuates our collective extreme fear of and unhealthy relationship with death that has real and destructive consequences in people's lives. I know it has in mine, and it manifest itself at the worst possible moment, when I needed to see and be with and learn to love my baby. But that part does not need to go into a letter to a community centre.

I get that different people find different things "disturbing". But so many business and private residences put up decorations that I really don't think having city-owned sites be gore-free zones is going to negatively impact anyone. I'm pretty sure no one has ever been traumatized by a lack of Hallowe'en decorations.

I think I would be more ok with the whole Halloween premise if I felt that people were also doing some of the work. The grief work. The work of being human. That we were all genuinely honouring what is special about life - that it ends - before jumping straight to a supposed celebration of life. This year I'm again planning to attend All Souls Night events at the cemetery, some of it in the hall where we had his memorial service. Last year I let the rain stop me but this year I really need to get back to honouring him (regardless of weather!), of finding ways to be close to his memory again. Year six has been hard. Getting further from the time he was born has actually been harder on me, not easier. And a celebration of his life remains impossible for me. It was just so short and so brutal and I live every day with the after effects. It would be so much easier if I could just celebrate but I can't, and I can't fake it without some cost to my well-being, so. Honouring.


Sunday, September 17, 2017

[ ]

He suffered. I know this. My OB told me "it would have been quick" but I know this cannot be true. You shouldn't lie to your patients, even if you think you are doing them a kindness. He was alone, he was scared, he suffered. I know this.

Friday, July 14, 2017

Figures

This week we were at a thrift store and I noticed this figurine


This is a scene which did not happen for us, with him either alive or dead. There is so much I could write about both those scenarios. 

A voice in my head says why don't I just see it as us with our daughter, a scene which did happen with her very much alive. But for me, it's just not. I don't need carved wooden representations of her because she is here with us. With her, I have the real thing every day.

The man and the woman are looking at the baby with love. Whether with smiles, laughter, anguish, or grief. I know that the love is what matters.

I bought the figurine and it sits with his ashes. I find it very difficult to look at but that doesn't mean I don't want it there.

Wednesday, March 15, 2017

Worthy

Yesterday I read an article about a hospital that trains its nurses on stillbirth. It sounded quite good because it was led by a bereaved mother. It was a difficult read because it reminded me of all the things that didn't happen after he was born, and all the things that remain a mystery to me. Other people cared for him, not his parents. This has remained a huge issue for me. I tried connecting with people at the hospital to find out more of his story but eventually I had to give up. The responses ranged from none, to aggressively defensive. I didn't have it in me to continue. When you're carrying hard things, sometimes you have to choose what to drop for self-preservation.

In the article, one nurse said she always puts diapers on stillborn babies (she called them "my stillborn babies", kinda ugh but ok fine, her heart is in the right place). She said it gives the babies "structure" if their bodies are fragile. All good. These are the unfortunate practicalities of handling dead bodies. But then she was quoted as saying, "I always like to tell parents how it will keep baby warm." I am kind of very creeped out by this. I've met people like this who patronize me as a bereaved parent. It comes across as so condescending and in this case it's also deceitful. Stillborn babies do not need to be kept warm. They need to be kept cool. There is no need to deceive parents about this. There is no need to say anything. Putting a diaper on a stillborn baby sends a profound message to newly grieving parents - that their baby is worthy of loving care, the same as any newborn baby. One of the things the article talks about is modeling. One of the best ways for healthcare staff to help parents reconnect with their baby after the trauma of stillbirth is to model holding and cuddling and caring for that baby. For the parents to see the nurses caring for their baby, or better yet to be able to do it themselves, is so important.

Did someone put a diaper on Toren? I might never know. I had some with me in my hospital suitcase. I had packed a few different sizes because with our daughter, we had only brought one size and she ended up being huge. Almost 10 lbs! The diapers we had brought wouldn't fit her. So this time I was prepared (for that anyway).

Saying all that, it's a really good article and should be widely shared. You can find it here: Why photos of stillborn babies matter.


I went on a bit of a twitter rant about it as I was reading it because it was really evoking some complicated feelings in me. I'm preserving it here, mostly for myself, but you can check it out if you want.

I do worry that all this focus on good bereavement services takes something away from the important work of preventing stillbirths in the first place. But that's for another time.

Proof

When I was pregnant with him I was taking piano lessons. I had always wanted them since I was a kid and was lucky enough to be able to do them at this point. I wasn't sure how I was going to be able to continue after he was born but I was hopeful that after getting settled into a routine with him I would be able to continue. After he was born, I never went back. Not for myself anyway.

Yesterday I was clearing out old books and I found my old piano notebook where my teacher would write my homework for the following lesson. I hadn't looked at it for over 5 years. Here was the last entry:


Sometimes I get incredibly sad when I get proof from the world that he is being forgotten. People say things to me that make me think (but almost never say), "Have you really forgotten I had a baby who died??" Because if they had remembered, they couldn't possibly say these thoughtless things to me.

I don't need proof that he lived. I carried him and delivered him and have his ashes. But still, when I get it, it's a wondrous thing. It's also a difficult thing. I think the biggest shock in this moment was seeing that exclamation point at the end. His death, and the circumstances of his birth, have almost completely taken over most of my memories of my pregnancy, which in addition was a difficult one. And I've been stuck with this secret, dreadful feeling that I was unhappy because of him. That maybe, deep down, I didn't actually want him. In time I've come to accept that I was in fact suffering physical effects from pregnancy which made me unhappy, and that I really was looking forward to meeting him and starting our lives with him. Here, in a notebook that only two people were ever going to see, was proof that I was excited. Written in an unguarded moment - an expression of love. 

Sunday, February 26, 2017

The Box


"What's in the box?"

My 8 year old asked me this question yesterday while getting ready for bed. What's in the "box" is of course her baby brother's ashes. She has known this from the beginning but we hadn't talked about it for a while. Sometimes it's hard to know if she is just starting a conversation or if she genuinely doesn't know. She likes us to tell her stories from our lives and sometimes she will ask about those stories in a way that makes it seem like she doesn't remember hearing them 500 times. This is a different kind of story. A difficult and complicated story. No happy ending. His ashes. Baby's ashes. They just seem like two words that should never go together. I felt a bit panicky. Does she really not remember?? It seems so unlikely given how open I have tried to be with her since he died. Regardless, I had to answer. I can't imagine saying, "Never mind that." or "Mind your own business." or trying to change the subject - "Have you brushed your teeth?" I know why people might do this but I just can't do it to her. I never could. It provokes feelings inside me, feelings from childhood, of being lied to. Of not being told when important things were happening. Of being betrayed. We want her to trust that we will tell her when important things are happening in and to our family. These are her stories too, and bad things happen when you cut people off from their own stories.

"Those are Toren's ashes. Remember?"

"Yes I remember." She gives me a big smile. Whew. Ok she remembers. Glad that's ov...
"Can I see them?"

I have not looked at his ashes in a long time. I didn't want to at that moment, but I have no objection to her seeing them if she wants. She is building her own narrative about him. It's going to take her her whole life and it will probably never be convenient for anyone.

The box where we keep his ashes is a wooden box with carved plumerias along the top. Three months after he was born we went to Hawaii. It ended up being a difficult trip because of course we thought we were leaving our grief behind but it snuck into all our suitcases, even the carry-ons, when our backs were turned. I was pretending to be a 'normal' person without a dead baby, looking at souvenirs, and came across these beautiful boxes. Because my old brain had been replaced by this new, grieving brain, my first thought was, "They look like little coffins." An interesting feature is that they are not easy to open. There's a trick to them. You have to remove several parts and there are actually two lids.

She asked what the bigger pieces were amongst the powdery looking substance.

"Bones."

And then the moment passed. We put the puzzle box back together. I think I would like to have a little plaque engraved with his name. I have this persistent low-level worry that the box is going to get stolen. You see that in the news sometimes. Someone breaks into a house looking for valuables and inadvertently steals someone's ashes. It would devastate me.

It's been 5+ years of surreal moments - difficult, amazing, dreadfully sad, fascinating, shocking, enriching moments. Moments that teach, if you can just hold on to the teetering landscape and see them through. This conversation with her will never end. I wouldn't want it to. She will have many more questions about her brother throughout her life, none of which I can with any honesty say I look forward to. And yet it brings a closeness between us, a realness. It's truly a privilege to help her navigate this sibling relationship. And it's what I would be doing anyway.

Tuesday, January 17, 2017

Sunday, January 08, 2017

Five years

All day Friday I was aware of avoiding making his birthday "too sad" for my daughter. I can't stand when other people do that and here I was doing it too. Avoiding a hard truth because I think it's "too sad". I think one of the big reasons I was avoiding doing the usual stuff for him this year - lighting his candle, getting flowers, organizing a little trip - was because of her. There are many other complicated reasons that I don't have words for but one of the big ones was her. Rationally, I firmly believe she is entitled to her sadness and that we need to grieve him as a family as well as in our own quiet, individual ways. Putting it into practice is...harder. We did make a cake. We still have her birthday candle from when she turned 5 and I had been planning to use it but then I chickened out. The overwhelming feeling I had was fear. Fear that she would be sad. Fear that I couldn't handle seeing her sad. So yesterday when she was getting ready to go to a birthday party and making a card, I found some courage, dusted it off, and during a quiet moment I said to her "Today probably would have been his birthday party. Or tomorrow." She didn't say anything. I started to wonder if she had even heard me. After a few minutes she skipped off and got a card I had made when he was born, with his name, birth date, and an Emily Dickinson poem, and she copied part of the poem into the birthday card she was making for her friend. And she did this all in her energetic, happy little way. She even seemed to be feeling a bit proud of herself. I thought that was all so interesting. When I overcame my fear and allowed her to share our family's reality, she found a way to integrate it. It doesn't mean she's not sad about him. It just shows what grievers everywhere know - that grief is as individual as love.

Five has been hard. Harder than I was expecting. Expectations and grief are sworn enemies, I keep forgetting to avoid trying to unite them. Even though I'm still so angry, that he died and that the world seems to want to be ok with babies dying at birth, there is still a small feathery hope perched in my soul, which surprises me because honestly, I can't say any of this has gotten any easier. I don't know what it's hoping for but I guess it's enough for now to know that it's there.