Monday, December 31, 2012

New Year

I can't believe we are facing a new year already. I don't feel any joy in it, just an uncomfortable tension. It is another milestone to get past. I know tomorrow is just another day really, another day without our boy, but there's something about the changing of the calendar that seems to emphasize his absence. Time marches forward and we have to figure out how to carry him with us. As another babyloss mother said to me - we can never put them down. Nobody can take them from us for a while like they could if these babies were alive. For a break. People say he is always with us but they have no idea what a burden that is.

Last year when people asked me what my new year's resolutions were, I said, "Have a baby and floss more." The flossing was sort of a joke. (My dentist would say no it's not.) I had a baby one week into the new year, so that part came true, but when he died, I stopped being able to take good care of myself. It's something I still struggle with although it has gotten better. I like Dr Jo's idea of new year's "intentions". Much more reasonable. I do have intentions regarding this grief, of continuing to be mindful of it and of not being influenced by other people's ideas of what it should be for me. Also helping our family through helping others. That one seems to work for me when I am able to. Tapping into gratitude and self-compassion whenever possible and not beating myself up too much when it's not. I've been reading about acceptance but I'm still not really bothering with that one. I can accept that he is dead (I know people worry about that) but I will never accept that he died.

Christmas day was hard. Peter managed to give our daughter the Christmas she deserves but I was in and out.

Wishing everyone who is struggling moments of peace as we face the new year, and hoping the breathing is a little easier in 2013. xo

Tofino









Thursday, December 27, 2012

Angel



(When she says "hotel room", I think, "hospital room"...)

you spend all your time waiting
for that second chance
for the break that would make it okay
There's always some reason
to feel not good enough
and it's hard at the end of the day
I need some distraction
oh beautiful release
memories seep from my veins
let me be empty
and weightless and 

maybe I'll find some peace tonight

in the arms of the angel
fly away from here
from this dark cold hotel room
and the endlessness that you fear
you are pulled from the wreckage
of your silent reverie

you're in the arms of the angel
may you find some comfort here

so tired of the straight line
and everywhere you turn
there's vultures and thieves at your back
the storm keeps on twisting
keep on building the lies
that you make up for all that you lack
it don't make no difference
escaping one last time
it's easier to believe 

in this sweet madness
this glorious sadness that brings me to my knees


Monday, December 24, 2012

Christmas Candle

On Saturday we went out to some friends for dinner. These are new friends we made this year through our support group. It's always surprising to me how much fun this group can have together. It's just very relaxed, no one has to worry about mentioning their baby or things about the pregnancy or the stigma or the grief. At first when we started meeting socially (we call it cheating on the social worker!), as soon as we would meet, we'd start talking about all the hard stuff. Over time, I've noticed that now we tend talk about other things first - work, travel, family, pleasantries - and  then do the intense support part afterwards. It's not planned. We don't have to talk about this stuff. Except we do.

This night, our hostess had an activity planned for us - centrepieces. I've never made one before - actually, I don't think I really knew what a centrepiece was. Something pretty to put in the centre of your table I guess. It turns out it's a fun activity and a lovely idea, and a very necessary one for us this year. It holds the candle we are going to light for Toren and keep lit through Christmas day. Something pretty to put in the centre of our day.


That centrepiece was actually  made by Pete. I think he's secure enough in his manhood that he doesn't mind me telling you that! I was busy keeping our daughter happy at the time. We had to bring her with us because our babysitters were not available. Just when I thought she was going to crash on the couch, she saw all the branches and ribbons and that was it, she was in like flynn. So she made her own little centrepiece too:


It was so nice, and such a relief, to be able to feel festive. I really didn't think I would this year. We had been to the Nutcracker earlier in the day and we had a nice time but a few times during the show, during particularly beautiful passages in Tchaikovsky's score, I would think, He will never get to hear this. He will never experience beauty. He won't experience pain and suffering either but that's little consolation, if I'm honest. Actually, he did get to hear the Nutcracker. We went last year around this time when I was at the end of my pregnancy. He was still alive then. Earlier in the grief, this would have brought me a lot of comfort but now, further along, it almost feels more bitter than sweet.

Big thank you to our hosts and the friends who were able to join in for providing a safe and fun space for us to truly enjoy part of the holiday season. It's strange to me that feeling "safe" is even part of the equation. But it's part of the sad reality. I was never a very secure person generally, and since Toren died, I feel more vulnerable than ever. Feeling secure is very much treasured.

Two blog posts I read this morning which really resonated with me:

Holiday Miracles - a beautiful story of connection.

In Which I Get Angry At The Ones Who Judge The Grieving which expresses so well some of the anger that is so present on this path.


Saturday, December 22, 2012

A Reason To Pause

Today is a particularly difficult day for a family that we met in Arizona this fall. Two of their children were killed in a car crash three years ago on this day. I talked briefly with the kids' mother at the MISS Foundation conference. She had pictures of her teenage son and daughter on her conference ID. Peter participated in a men's support group with the father. Hard to imagine what they are feeling today, and every day since their children were killed. Please read their family's story and take a moment to share in their grief and see how they are working to find meaning in their loss.



Friday, December 21, 2012

Wintersong

Dedicating this Sarah McLachlan song to all the babyloss families out there and to my Still Life Canada family.



Wintersong

The lake is frozen over
The trees are white with snow
And all around
Reminders of you
Are everywhere I go

It's late and morning's in no hurry
But sleep won't set me free
I lie awake and try to recall
How your body felt beside me
When silence gets too hard to handle
And the night too long

And this is how I see you
In the snow on Christmas morning
Love and happiness surround you
As you throw your arms up to the sky
I keep this moment by and by

Oh I miss you now, my love
Merry Christmas, merry Christmas,
Merry Christmas, my love

Sense of joy fills the air
And I daydream and I stare
Up at the tree and I see
Your star up there

And this is how I see you
In the snow on Christmas morning
Love and happiness surround you
As you throw your arms up to the sky
I keep this moment by and by

Thursday, December 20, 2012

Interview With Vicki Culling of SANDS

I just watched this wonderful interview with Vicki Culling, a social worker from Sands NZ. Sands is a parent-run organization that supports families whose babies are stillborn. I was fortunate to meet Vicki and her team at the MISS Foundation conference in October. She was incredibly supportive of us in our grief, but also with what we are trying to achieve here in Canada with Still Life. I also got to meet the interviewer, Alana Sheeren, whose son Benjamin was stillborn two years ago. She's a lovely person and used to live here in Vancouver although she's now based in California. Her website is a good resource for anyone grieving the loss of a loved one.

This interview covers a lot of the information Vicki and the Sands team presented at the conference. I was struck by how different her experience was to mine when she had her stillborn daughter, Aster. It was very upsetting to think about my regrets and to realize it could have happened so differently. I told people at that presentation: "Our son was born in a dump." A few months have passed since the conference and the Still Life team continues to talk about how we can help Canada catch up to other nations in caring for newly bereaved families. One of the key messages we want to get out there is minimizing regrets for families who have experienced the death of their baby.

In this interview, Vicki talks about some of the common challenges faced by parents of stillborn babies. In addition, she gives a moving account of the precious - and in some ways, joyous - time she and her family got to spend with Aster before they had to say goodbye. Not that it wasn't heart-breakingly sad, but it was clearly different to the wrenching experience we had with Toren.



Christmas Shopping

Interesting what jumps out at me now...







Wednesday, December 19, 2012

Ask A Mortician - Talk To Your Children About Death

I recently learned about this interesting (and entertaining!) series called Ask A Mortician featuring Caitlin Doughty, a licensed mortician. Here is the installment entitled Talk To Your Children About Death:



You can also find an interview with Caitlin Doughty here: Answering My Daughter's Questions About Death.

Memorial Service Planning

The planning of Toren's memorial service is really starting to stress me out. It's adding to the grief of Christmas without him and also to the buildup leading to his first birth day. I want to do it. I do and I don't. I'm dreading it. But I want to do right by him. All year I've dreaded doing certain things, but then when it happens, I'm always glad I did it afterwards and can even feel pretty content during the event. It usually turns out to be a relief. I'm sure this is what will happen on January 6 (well, I don't know about "content") but I only know it rationally, based on recent past experience, not emotionally. I can't feel these things in advance.

The notice for the service is pretty much the third hardest message I've EVER had to send out in my entire life. The first one was the notice that he died, the second was the autopsy report (something NO parent should ever have to deal with) and now this, his funeral notice. I sent it as far and wide as I could, just as I would have done when he first died. I couldn't face a funeral then. I can't really face it now, but somehow, it's happening. People say we do things when we're ready so I guess this is my feeble version of "ready". It's all there is so I'm going with it. I don't expect people to travel for it (although some friends are), I just wanted everyone to know that it's an open service. Anyone who wants to attend to grieve this child, this person they were looking forward to meeting and welcoming into their lives, should come.

Big thank you out to the friends who have RSVP'd, whether to say yay or nay. I didn't realize what a big deal it would be. It's been surprising the people who haven't responded at all. By "surprising" I mean hurtful and difficult to deal with. I had the same experience when I sent his photo out and then with our awareness walk. I also sent individual emails to certain friends reaching out and just never heard back, ever. It didn't occur to me that people I consider friends could just ignore these things. I know it can be hard to know what to respond but trust me when I say, it's about a million times harder for me to send out in the first place. So a big thank you to those who have been able to show courtesy, compassion and respect to our family in the face of your own discomfort.

That has been one of the really tough things about this path - the unexpected things you have to deal with as a grieving parent. Missing him from our lives every day would be enough. But it doesn't work that way.

(If you would like to attend but didn't receive the notice, sorry for the omission. It was not deliberate. Just email me and I can send it to you.)

Sunday, December 16, 2012

Toren's Tree 2012




Tragedy

Much has been written about grief, sorrow and how to help in the wake of the terrible tragedies in both the States and China. So far this is the most respectful thing I've read. Not doing things to make ourselves feel better, but being truly mindful of the pain and suffering of those families who are living it.






Friday, December 14, 2012

STILL Project

I've been following the progress of this documentary on twitter: STILL Project. The filmmakers are a husband and wife team whose daughter was stillborn 10 years ago. Their mission is to break the silence that surrounds families whose infants die during pregnancy or after birth. There is so much stigma around this topic, I feel it and live it every day, and it's so important that we start talking about it. It's not easy. I have so much admiration for people who take on public projects like this, for the benefit of everyone. Especially when they are grieving their child.

One of the filmmakers posted on their blog:
We're not here to force people to step out of their normal process of grief. STILL is simply a sign post, a small shining light in the darkness. Just a note, a reminder that we are here and we endure, survive. We exist at various stages. There are stages and growth. Losing a baby isn't final, terminal. At least it doesn't have to be. There are casualties of life and love beyond this loss. We're hoping that a kinder world may someday help minimize the destruction beyond the death.
I can't tell you what reading something like that means to me. When babyloss parents talk about healing and growth, it doesn't sound like bullshit to me. When other people try to impose it on me ("You will heal."), it drives me bonkers. We are approaching the end of our first year on this difficult path. I asked Peter the other day if he thought our lives are ruined. To hear how other parents further along not only survive but thrive, it gives me some hope. Some days I can't even manage a bit of hope. It's so important to me to connect with other families. Light in the darkness.

There is another film coming out as well called Return To Zero. It's a fictionalized account of stillbirth. When I first heard about it, I thought, No way, I'm not seeing that. I didn't want to see what Hollywood would do to families coping with stillbirth. Interestingly, the STILL Project team went to visit the set of RTZ and that makes me feel more confident that the story will be treated with sensitivity and also realism. There is an interesting blog post here by a grieving father who was on the set of the movie. He talks about meeting Minnie Driver and the compassion she showed after hearing his family's story.

Lights in the darkness.

To follow STILL Project: their fb page is here or on twitter: @STILLProject. The Return to Zero website is here. (WARNING to grieving parents - if seeing photos of pregnant women is difficult, the RTZ site has a huge banner of a pregnant woman (presumably Minnie Driver), a very closeup photo of her belly, and it's on every page. It was jarring to me at first but now I'm used to it.)


Wednesday, December 12, 2012

Ouch.

This is what I found in our mailbox today:


I know I'm not the first person on the planet to get added to a mailing list - and not the only grieving mother enduring these kicks in the teeth. It just sucks.

Tuesday, December 11, 2012

Seasonal Activities

We put the tree up on Sunday. It was tough but it's done and now I like it. I have special ornaments for Toren but at first the thought of putting them on the tree was dragging me down. It caught me off-guard. Once the tree was up, I thought, Ok, time for the hummingbirds. I went into the bedroom to get them and then just sat on the bed for a while. The enormity of it all hit me, not for the first time. Last year at this time, he was here. Now he is gone.

The next day, I felt able to do it. I don't know what was different. It was just a different day I guess. I put two hummingbirds up and it feels ok. One of the mothers from our support group gave us a red sparkly hummingbird with a 'T' on a ribbon around its neck. I love it. So thoughtful. I got the other hummingbird in Arizona when we went to the MISS Conference. I have more ornaments for him which I hope to add soon. I didn't mean to have so many ornaments for him, it's just how it turned out.

I'm inching through this season and doing pretty well, I think. I guess. I don't know. It does make me angry and sad that instead of getting to enjoy Christmas with our 11 month old, I just buy him ornaments that somehow represent him. I feel indescribably sad about that. It's like instead of winning a house in Hawaii, you get a fridge magnet that says I ♥ Hawaii. It's such a stupid comparison because it's so much worse than that - it's my child. One of my children is just not here.

I'm thinking of buying a real tree, a little one just for him. I saw some at the grocery store the other day. We have all these ornaments now. I asked one of my friends if we could plant the tree at their cabin after Christmas. I want to tie one of the ornaments to the top of it so that, as the tree grows, it will rise up up up towards the sky.

Today I was thinking about whether Toren would have been furniture-walking by now. Our daughter started walking at 10½ months so maybe he would have started early too. Or not. It upsets me that I don't know and will never know. He may have only been crawling. He would probably be fascinated by the tree and be pulling at the decorations and getting into major mischief. I would probably be frazzled by it and just want him to leave the tree alone. Today, everything is still and quiet. It's a daycare day for her and I'm just here alone, looking at this tree with lights and decorations. There's no one for me to scold or distract or take care of.

**********

I've started to receive messages from friends freaking out about Christmas cards. The perils of keeping a blog. I hate that I'm such a pain in the ass to my friends. This thing is so confusing to everyone, to me most of all, and my writing is not always up to the task. And it's the people who contact me about things like that, those who have been reading this blog (which I totally appreciate) who are the least likely to send me a hurtful card. I understand the difficulty. I now have many new friends that I would like to give a Christmas card to, but I know that they are going through one of the most difficult things possible. I have to really think about what I write to them. It's not easy.






Monday, December 10, 2012

Art Imitating Life

This statue lives a block from our place. I've been looking at it for years but now it looks different to me. I snapped this photo today.


Friday, December 07, 2012

The Death of Grief

There is a fascinating (and scary) battle happening in the world of mental health. Dr Joanne Cacciatore of the MISS Foundation is leading the charge. She feels strongly about this issue because she has been working closely with bereaved parents since shortly after her own daughter was stillborn in 1994. She is a professor, researcher and therapist. I'm thinking she has a pretty good idea what she's talking about. I was lucky enough to get to meet her when we were down in Arizona for the MISS conference. She's a super-smart lovely person and has the trust of thousands of bereaved parents because she understands what they are going through and offers them her considerable knowledge and her unconditional compassion.

The short version (and, buyer beware, my version) of this story is that the American Psychiatric Association has released a new edition of their diagnostic manual (known as the DSM) which is the so-called "bible" that is used to diagnose mental illness. This new edition directs the people who use this manual - clinicians, therapists, social workers, counsellors - to diagnose bereaved parents as clinically depressed as early as two weeks after their child has died. Two weeks after Toren was stillborn, I was still in terrible shock and didn't even really realize what had happened to me. If someone had diagnosed me as depressed and put me on medications, I think I would be a lot worse off than I am now. Grief is not depression, it is not a mental illness.

I urge you to read what "Dr Jo" and her team have to say about this potentially damaging change. Grief is so terribly misunderstood in our culture. I always sort of knew it, but now I am learning first hand exactly what it means, for me personally and for our society. It's totally warped to realize that an organization like the American Psychiatric Association doesn't understand it either. Yikes.

Read the comments afterwards from grieving parents, Dr Jo, and care providers, including one of the people who worked on the new DSM. I added my own comment today:
Our son Toren was stillborn due to an umbilical cord accident in January. Grief has been very confusing and I've had to figure it out through a combination of talking to other bereaved parents, reading, finding a compassionate therapist who gets it, and thanks to organizations like the MISS Foundation. I am sad, I am angry, I am frustrated, I cry, I scream, I have moments of gratitude and compassion, I feel crazy, I think about dying, I just want to be DONE with all this grief shit. It's a mix of totally unpredictable, confusing emotions, sometimes one on top of another. I can't imagine drugs helping me figure it out. Or a clueless therapist. When our son was first born, I thought I could stop the grief. No one at the hospital was able to shed any light on it whatsoever. Now, almost a year later, I know I need to be in it. In the grief. I'm *supposed to* feel sad, angry, crazy, etc. It was harder to try to stop it. The thing that has helped me the most is connecting with other grieving parents. I am wary of medical people because they seem to not know anything about grief. I don't really need anything but understanding and if that's not possible, acknowledgement. I worry about newly bereaved parents not being properly understood. It doesn't sound like this change to the DSM is going to help with that.


Thursday, December 06, 2012

Visit to the maternity ward

Today for the first time since Toren was born, we went back to the maternity ward. I wanted to meet Amelia's baby brother and see how the parents were doing. We went with Scarlett's parents. I can't imagine a better set up for having to go back there. It was an intense, emotional visit. Tears of sadness, tears of joy. Amelia's parents were overjoyed, bursting with happiness and so in love with their beautiful son, but also feeling more fully the loss of their baby girl. Her picture was there at the bedside and we got to take a family portrait of all of them. A family of four, with the eldest child very much missing.

For me, walking back onto the ward where we had had to leave Toren was surprisingly ok. I think part of my brain was shut down, the part that links past with present. I saw the room where I sometimes went for my OB appointments. I looked into the assessment room at the bed I was lying in when we were told there was no heartbeat. There was a woman in the bed, husband by her side. I felt blank. The only thing I couldn't do was look at the nursing station. Whenever I walked by it, I kept my eyes straight ahead. I think I was afraid of seeing one of our nurses. I think that would have pushed me over the edge but I don't know for sure because I wasn't even tempted to test it.

Everything that was true the day before Amelia's brother was born is still true. Nothing has changed about that. But now, there's a new piece to the story. Joy. A living baby to take home. A child to raise. He will know his big sister.

Life is so unfair sometimes. And so beautiful.



Wednesday, December 05, 2012

The Unavoidable Holiday Season Blog Post

On at least one of my online support boards, this time of year is referred to as the "hellidays". As one friend said, "Anger and bitterness...sounds like the holidays are here!" That made me chuckle. The other day I had to do some shopping, and for the first time since last year, I heard the song I'll Be Home For Christmas (...♪ if only in my dreams ♫...). I have always found that song sad because it's a wartime song and I picture these poor soldiers, some of them knowing they won't make it home in time and others never making it home at all. This year when I heard the song, it felt like one of Santa's elves was head-butting me in the stomach.

Worse than the music are the cards we have received from two of our local hospitals. One of the hospitals is where both our children were born. Because we donated a certain amount of money after Toren was born, they sent us a card wishing us a season filled with "light and happiness". I know this is a key time of year for organizations to solicit donations. I get that. But...light and happiness as we approach the first anniversary of our baby's death? Light and happiness as we remember this same time last year when he was still with us and the possibility of intense joy was not just a hope but an expectation? This is our reward for asking that thousands of dollars collected in our son's name be diverted to the maternity ward to benefit other families: a painful, clueless Christmas card that seems to mock our feelings. These things are harsh to me now. I want to send it back and ask for a straight up condolence card, something that matches more what I'm feeling. I wonder if they even keep condolence cards in stock. Acknowledging grief does not seem to be something they are good at (which I blogged about here: Culture of Happy). I would even offer to pay for the postage. I could consider asking for a gentler Christmas card but even  a condolence card seems to be a tall order for them so I'll start with that. Something else arrived in the mail today from the hospital but I don't know what it is. They're crazy if they think I'm opening that one.

We bought some kind of charity raffle ticket from the other hospital so they sent us a letter from a parent whose child almost died. Of course that must have been a stressful time for that family, but to open a letter saying 'our baby is home this Christmas, please donate' did not go over well with me. Seeing the baby's happy smiling picture on a Christmas tree ornament did not help either. My baby's picture is also on a Christmas tree ornament but he is not bright eyed and smiling. He did not make it home, for the holidays or ever. We had to walk off the maternity ward and leave him behind. Thinking about that can bring me to my knees. Do they think newly bereaved parents get some kind of comfort out of reading these things? No, it's just a mass-produced card that they send to everyone on their hit list. So far it's been a total curse to get special attention from these organizations. If this is their way of thanking us, please just take our money and shut up about it!!

Peter has officially banned me from opening any more mail.

I thought we would be donating to our hospital every year on Toren's birthday. When we decided to do that in the early months, it was nice to know we would be doing something on his behalf every year. We can't organize his birthday parties but we can do this. Now all our donations will be diverted to Still Life Canada. Once the non-profit registration goes through, we can make it official. The paperwork has been submitted and we are anxiously awaiting confirmation but it could take several months. In the meantime, we are funding everything ourselves anyway (along with the two other families) so I guess our donations for Toren are already at work. I think this will be a more effective way of supporting our local hospitals in the long run.

There, can we get off the mailing lists now please?

Monday, December 03, 2012

Still Born

At the MISS Foundation Conference, I attended a parents' panel where bereaved mothers and fathers told their stories. The panel was a mix of families who had lost children to any cause at any age, and parents of stillborn babies were included. Indeed, the MISS Foundation was started because of a woman who had a stillborn daughter, though now they support families coping with all types of child loss. ("MISS" originally stood for "Mothers In Sympathy & Support". It started as a support group.) As the mother of a stillborn baby, to sit in the audience listening to parents of teenagers, toddlers, children of all different ages, speaking side by side with parents of stillborn babies - it was powerful.

When Toren was first born still, I didn't know how I was supposed to think of him. Was he my child? Could I still be his mother? I didn't know anything about stillbirth. I was totally, totally confused. I didn't want to be the mother of a dead baby (still don't) so I tried to reject the whole notion, but my actions did not match the incredible pain I was feeling. When you are pregnant, a bond starts to form. It wasn't just with me, Peter felt it too and so did our daughter. When Toren died just before he was born, the shock of it broke that bond in a brutal and sudden way. Unfortunately the hospital was not equipped to help us with the process of restarting that emotional attachment so that we could begin to grieve in a healthy way and feel like Toren's parents again. We have since started that process thanks to the MISS Foundation and the network of bereaved parents we have met in the last year.

When your child is stillborn, you feel the full force of what you have lost and of what is missing. But you quickly realize that the world at large does not necessarily see your child that way. They do not see your child as a child, as a person who has died. I have been told by parents of stillborn babies that people said to them that their child was "a dream" or that they "weren't ready" to be parents or that it 'wasn't meant to be". I myself have felt how painful it is to have my child's life and death dismissed with the wave of a hand and a condescending smile, sometimes by people I thought were friends. I recently read an article about stillbirth and someone commented that he didn't see the point of trying to prevent it because he thought it was "the body's way of aborting babies". Every time I read something like that, I feel like it takes a week out of my life.

The sincere compassion that the parents on the conference panel showed to each other gave me so much comfort and so much hope. There was no judgement, only love. Parents whose older children had died would say to parents of stillborn children that they couldn't imagine not having the memories they have. They seemed to get the magnitude of what parents of stillborn babies were going through. Some of those parents had seen their children suffer. Some of them had even inadvertently caused their children's death. To see those parents, so deserving of compassion themselves, reaching out to parents of stillborn children, has had a huge impact on me. If the compassion and understanding that was in that room that day could be captured  and diffused out across the planet, we could do some serious damage to world suffering.

No circumstance is a good one for losing your child. The stigma of stillbirth only adds to the pain.