Monday, October 29, 2012

Pumpkin patch

This weekend we went to the pumpkin patch. Last year at this time, I was shaped like a pumpkin myself. It's been strange to be back in the same season, doing the same activities, but not pregnant and with no baby. The seasons of grief, as a friend puts it. We arranged to meet another babyloss family there. They have a daughter similar in age to our daughter and their baby girl was also stillborn in January around the same time as Toren. We met at our support group. I don't think I would have gotten any enjoyment out of the day if they hadn't been with us. I want to continue the seasonal traditions we started for our daughter, and which we were of course planning to include her brother in, but I also need to balance that against taking care of my own feelings and living authentically, not just going through the motions. Sometimes you have to do that and that's just the way it is, but I always try to find a way to be real about it. I'm not much of a fake it 'til you make it  person. It's a decent strategy, I'm just not good at it.

The first thing I saw when we pulled into the parking lot was a baby dressed as a pumpkin. So cute. Babies and pumpkins just go together somehow. When I see another family like that, and I get that strange pull in my stomach, I always think, I have no idea what they went through to get to where they are. Maybe nothing, just blissful ignorance, or maybe the worst thing imaginable.

I was glad that our daughter had someone to play with. The two girls had a grand ol' time squishing through the mud (and there was some serious  mud there), dancing to the music and rolling around in the hay. They even kind of look alike, almost like sisters. They are sisters in one very important way - each a big sister with no baby sibling at home. That's how I feel about my friend who was with me - sisters in experience. It reminds me of something I heard at the MISS Conference from Dr Peter Breggin - the only thing we have to offer each other is  each other.

When we were sitting having our snack after choosing our pumpkins, I saw a couple who had attended our support group once. They came to mark the 10th anniversary of their baby daughter's death. Ten years ago, they had had to make a terrible decision based on testing during their pregnancy. They had to decide whether to subject their child to potential years of pain and suffering, or suffer themselves by making a compassionate decision. I have met a few couples now who have been put in that incredibly difficult position, where their choice is between horrible and terrible. Only someone who has been in that situation can truly understand what it's like to make a hard decision based on love and compassion. If that's not the definition of parenting, I don't know what is. When this couple came to group, they talked about their doubt and their guilt. Was it the right decision? They will always wonder. Couples in that situation don't  talk about it for fear of being judged. They are the silent subset of an already silent group. People say "If it was me" but you don't truly know until it is staring you in the face and it is about your child. (Good rule of thumb there - never start a sentence with "If it was me" when talking to grieving parents.)

I decided to go say hi to this couple, even though I knew they probably wouldn't remember me among the sea of faces that day. But I told them how much I appreciated them coming in and sharing their family's story. I find that incredibly courageous. They asked how I was doing and I know they meant it. I'm glad I spoke to them.





Sunday, October 28, 2012

Universe 2000000000000000 Me 1

I bought some icloud storage thinking it would be a good way to back up my iphone but I couldn't get it to work. I did an online search and saw that it's not just me, it seems like it's not a great product. So I decided to get a refund. Somehow. This is the kind of thing that normally I ask Peter to do. And especially since Toren died, I just can't face this sort of thing. I think to myself, my baby died, do I also have to face an automated answering system?? And remind me to blog about how I "educated" a telephone marketer about compassion. LOUDLY. Anyway, I considered just letting the icloud thing slide and paying $20 for the convenience of being a total chump. I did read that icloud had deleted someone's entire contacts list on their phone, yikes. So this morning, I called. And I got the refund. And I kept my cool! Small victory against the universe.

Thursday, October 25, 2012

Time For Some Ellen!

When things get particularly heavy, I sometimes turn to Ellen. Ellen Degeneres is a mega-superstar now, but she started out as a confused young person who suffered abuse and self-doubt, but despite this, had the courage to speak her truth and face her fears and her detractors. When she came out as gay, she lost her job and endured public criticism, lack of compassion and lord knows what else. Over time, she continued to be true to herself, and now uses her powers for good on a grand scale. Her child did not die, no, she did not have to deliver him. It's not the same. But on the other hand, no one is going to threaten me or bash me in an alley because my baby died.

I was talking to another babyloss mom recently and we were talking about the people who don't want to hear from us. Who want us to shut up and not say things people don't want to hear - that babies are dying unnecessarily; that care and support for bereaved families is lacking; that grief is ever-present and is a function of love. I don't think there's a comedy routine in there! But we have Ellen. She says things people don't want to hear and she does it with grace and wit. I'm inspired by that.

This is a funny and for me, moving, clip from a live show a few years back where she talks about the impact that coming out had on her. There's a moment during the interpretive dance (yes, interpretive dance!) where she's sitting on the stage with her head on her knees and there's the sound of a heartbeat - that scene got to me. And I love what she has to say afterwards.

Wednesday, October 24, 2012

NILMDTS

Now I Lay Me Down To Sleep is a network of volunteer photographers who take professional photos of babies who are stillborn or who die shortly after birth. The organization was started as a non-profit in 2005 by a bereaved mother and the compassionate photographer she called to take photos of her son who died 6 days after he was born. It's incredible to me that such an organization exists. I personally know a couple who were able to overcome their fear of holding their stillborn son thanks to the NILMDTS photographer who came to the hospital to take photos for them. The organization trains photographers on how to manage a photography session with a newly bereaved family. I am guessing that these photographers have much more experience and training in how to encourage parents to interact with their child who has died than do many in the medical community. I noticed that their website lists a training session entitled, "Taking care of yourself emotionally", among others. Did our nurses get this kind of support after witnessing and participating in the birth of our son? I hope so but I have no idea. I think about that often.

When Toren was born, the nurses tried to contact NILMDTS but unfortunately there were no photographers available. I can't help wondering, if one had been able to come to the hospital, would that person have seen the beauty in our child and been able to coax us into holding him, like what happened with the couple we know mentioned above. The story they tell of their session with a NILMDTS photographer is so beautiful and moving. We would most certainly have more than two photos. A few hours after Toren was born, a NILMDTS binder was left on the table by my bedside. At one point during that day, I picked it up and quickly realized it contained photos of dead  babies, however beautifully presented. I dropped it like a hot potato. I was terrified. Now, many months later, I love seeing parents' photos of their children who have died. It's a precious gift to the parents, and to those with whom they choose to share the photos.

I think about the person I was in hospital that day, a mother out of her mind with grief and shock, and I wish so desperately that there had been a trained and experienced person available to recognize my extreme fear and guide me through the process. In essence, that would have been the process of ensuring that I understood, and felt, that I am Toren's mother and he is my child. Not a monster, not a medical problem to be solved, not a procedure to be endured. And not a scary experience to be avoided. A beautiful baby to be held, cuddled, cherished. It took many painful months and the support of other bereaved parents to set me on that path to motherhood. Everything is harder, and will always be harder, than it otherwise needs to be.

Today I spent time going through the NILMDTS website and found their list of suggested poses. When you are at the hospital, everything is a blur, emotions are in a whirl, and many decisions must be made. Things get missed. In the absence of a professional photographer, a list of poses ensures that regrets are minimized. We know of families where no one remembered to get a picture of baby with daddy, or a family portrait, or pictures of hands and feet. One of the suggested poses that has lodged in my heart is to take a picture with the parents' wedding rings in baby's hands, or with rings on baby's toes. It's a beautiful shot, which also helps show the size of the baby. Parents of living children forget how small their babies were when they were born. It's the same with parents of stillborn babies. There is not much time and there are no second chances once you have said a final goodbye to baby. I learned all of these things months after Toren was cremated.

This is the "three-point model" that NZ Sands teaches the healthcare community regarding stillbirth: 1. Slow down, 2. Encourage active parenting, 3. Create memories. It's not rocket science. It simply requires some training.

We brought clothes for him to the hospital. Several outfits because we didn't know how big he would be. We brought diapers and a little hat. Blankets. No one asked us for these things.

We are grateful for the photos we have. If our nurses hadn't taken the photos they did, we would have nothing, and I would not know what my son looked like. I wouldn't know that he looks like his big sister! That makes me happy. A bit of light in the darkness. I recognize that two photos is much more than many families get, families who don't even have hand and foot prints of their child. There will always be regrets but this is not an excuse to do nothing, it is a call to do more. As much as possible. We can do so much more. The parents we have joined forces with are working towards the goal of minimizing regrets for families facing the stillbirth of their child.

My regrets will be with me forever and I must learn to live with them. It's a definition of parenting that no one should be forced to endure.

To see photographic examples of the beautiful and important work done by NILMDTS, click here: Posing Guide for Hospitals. To read about how the organization was started, click here: Mission & History.

Respite

This morning I woke up around 5:30 and was done with sleep. My usual routine is to get up, turn on the computer, put the kettle on and check in with the grief websites. This morning, I just couldn't face it. My computer is in what would have been Toren's room. We were evicted from our apartment six months after he was born and we painted this room the same colour as his room in our old place. Pete had worked hard to turn a solarium into a baby's room in that other apartment - painted the walls up to the tall ceiling, laid down carpet over the linoleum and put up thick blackout curtains to keep out cold and light. Then we had started filling the room with our daughter's old baby toys, books, her old crib and our rocking chair. When we received our eviction notice giving us two months to vacate, it was like being punched in the face. Punched in the face after giving birth to a stillborn baby. Not good. One thing that made moving a little easier was painting what would have been his room the same colour. The rocking chair is in here too.

This morning, when it came time to go online, I just didn't feel like it. So I grabbed a cup of tea and a magazine and flipped through the pages. Last week I had bought the latest Vanity Fair because - full disclosure - Daniel Craig is on the cover. It's not a proud moment but it's mine all mine. The ads were a bit jarring, all that mindless, superficial selling of stuff. But then I started reading what's going on in the world of arts and entertainment and actually got a bit engrossed in it. This hasn't happened for a long time. Nine and a half months, to be precise. It felt good. I learned that Stephen Colbert's new book is called "America Again: Re-Becoming the Greatness We Never Weren't". That gave me a good chuckle. We used to watch him and his arch-nemesis/partner in crime John Stewart every night. Those two intellectual goofballs got me through the last two American elections. I realized how much I miss certain things about my old life.

I am not fooled. The grief has not gone away, nor should I make efforts to avoid it. But this morning - respite. And without guilt too! Nine months ago, I wouldn't have thought it possible. I won't bother wondering why, or trying to come up with a formula. It just is. For that I am grateful.

Tuesday, October 23, 2012

When Old Technology Happens to Good People

At my session today, my therapist was talking about the book When Bad Things Happen to Good People by Harold S. Kushner. That title has come up a few times in the last little while and I've been curious about it. I said I could probably get it from the library. She looked at her own bookshelves in her office and pulled out an audiocopy of the book. As I slid the packaging down, I realized, it's a little old:


She asked if I had anything that would play it. I haven't had something that would play it since about...1992??

I am second in line for a library copy of the book.

Monday, October 22, 2012

Cemetery Visit

Today I went to visit baby Scarlett with my mom, my daughter, Scarlett's mom and her lola (grandmother). I've been wanting to visit ever since I met Scarlett's mom in the spring but was never sure how to ask. What is the etiquette for visiting your new friend's stillborn baby's grave? Turns out, inviting yourself along after lunch works just fine! We bought some potted flowers to leave with Scarlett and pumpkins for a seasonal touch.

It was not the first cemetery I have visited this year. In the spring, we went to another cemetery to see about getting a stone for Toren. There is an Infants Area where stillborn babies have, in the past, been buried. Families can get their child's name engraved on a small stone and placed in the dry riverbed along a path. As I found out on that visit, that area is only for babies who were buried there between 1914 and 1971. It's where babies were taken after being stillborn or dying shortly after birth, probably without the parents being able to see them or hold them. At that time, it was common practice to whisk the baby away and tell the parents to just forget the whole thing happened. I think some of that mentality persists today, where it's not considered a big deal if parents leave the hospital without seeing their baby, instead of trusting them to see the beauty in their child and starting them off on a path of healthy grieving and being parents to their child. I have read that in some places, mothers of stillborn babies were given other people's live  newborn babies to hold, in the misguided belief it would somehow help them. I think this was going on as recently as the 1980s. It all sounds shocking, cruel and horrific to me. Obviously things have improved and we know better, but it seems that people still don't really have much of a clue what will "traumatize" parents. In our culture, there is still a push, some of it subtle, some of it vocalized outright, to get parents to "get over" the deaths of their children. Six months to the day after Toren died, someone said to me, "Six months ago? Oh ok, you must be getting over it by now." I find it traumatic  that people think this way about my love for my son.

In 2006, the Infants Area of that cemetery was landscaped and a ceremony was held to honour those babies and hopefully, help families with their grief. You can read about that project here. There is a moving article here about a family's personal story. (Caveats - The website listed at the bottom of that 2nd article doesn't seem to be up anymore. Also, I have not had a personal experience with the hospital in the article but I have spoken to other parents about their experiences there. Either things have changed or the services offered are only for children who are born alive but die in the NICU, not for families of stillborn babies. I am glad those services exist for NICU babies but would love to see it applied to families of babies who are not born alive.)

During our visit to the cemetery today, my daughter drew a flower to put in Scarlett's mailbox. I didn't have time to write my own letter but I will be prepared for our next visit. We were in a children's section so we talked about some of the children who were buried there. We visited Ava. I met her mom at the awareness walk a couple of weeks ago. Then Scarlett's mom blew bubbles and my daughter ran around the cemetery grounds chasing bubbles and just generally being joyful. This is apparently what Scarlett's cousins do when they visit too.

We are planning a memorial service for Toren on his one-year anniversary so I'm glad his sister had a chance to see what a cemetery is and how to spend time remembering and loving someone who has died. It's not the only way, it's one of many. She needs to know these things if she is to grow up to be a healthy, compassionate person who is not afraid of grief and grieving rituals. My own fear and unfamiliarity with grief rituals made it impossible for me to organize a service when he died, but now I feel able. I hope everyone who is grieving this child will be able to join us on that day. And I am thankful to all my new friends who help normalize grief and who model healthy grieving for our family.

Today wasn't a sunny day, nor a warm day, but it was nice to spend time talking about Scarlett and actively grieving her. Toren was on our minds but today was about Scarlett and her family. We won't be burying Toren's ashes at the memorial service but we will be laying flowers in the Infants Area and it will be a place we will be able to go to remember him and talk about him.



Saturday, October 20, 2012

Giving

At the awareness walk, over 30 pairs of children's shoes were collected and will be donated to Crabtree Corner, an organization that helps families living in one of the poorest neighbourhoods in Canada to improve the quality of their lives. Each pair has a tag attached with the name of a child in whose memory the shoes were donated. Each pair will be photographed, with its memory tag, and eventually, we hope to collect the stories of the people who donated and of the children they are honouring. We do this because stories are important, memories are important.

Friends and family also generously donated cash at the walk which, in true grassroots style, we collected in a plastic cookie container! Ok, obviously, we weren't 100% prepared that day. Over $400 was collected (we haven't gotten around to doing a final tally). Some of it will be used to pay for the food and the rest will be put back into the Good Works pot. Big giant thank you to those who donated and also to those who wanted to donate. We are not officially registered as a charity (having oodles of fun with paperwork and technology - don't ask) so we can't write tax receipts yet. 

In the next little while, I will write more about the work we are doing to support Canadian families whose babies have died. For now, more photos from the walk:

Goodies


Love is in the air & in the leaves



Three Mothers




Thank You

Scarlett's uncle put together this thank you video on behalf of the bereaved parents who were able to attend the awareness walk in Greater Vancouver (and of course those who weren't). It seems to capture the mood of the day nicely.


Thursday, October 18, 2012

Private

About 7 months after Toren was born, I was bringing our daughter to daycare and we bumped into another mom dropping her child off. She saw me and with a big smile said, "You're carrying less extra weight!" I thought, does she mean....what does she mean exactly? Then she said, "The baby! You had the baby. Is it a boy or a girl?" I ambushed her with the terrible truth and she was horrified. She had assumed Peter or someone was looking after him while I dropped our daughter off. After the initial shock wore off, we were able to talk about it and shed some tears together. Later that week she left a beautiful condolence card for us in our daughter's cubby.

It was pretty surprising to me that seven months on, people around us still didn't know that our baby had died. I don't know all the parents at the daycare personally. Our daughter only attends twice a week. I know some of the families, and some of those families know some of the other families. In the beginning, I suggested to the staff that maybe we could put an announcement in the newsletter. I thought the other families might want to know, if only to be able to talk to their kids about it. I was told they don't announce any babies in the newsletter. They offered for me to write an email that they could send, but I got squeamish because I don't know all the parents personally and didn't know how they would react. It doesn't make much sense to me now, but that's where my brain, and my grief, were at at the time.

When he first died, the staff at the daycare did everything they could to support us. They were so kind that at first I didn't realize how very uncomfortable they were with death and grief. They work with children, all of whom are well (I assume) and most of whom end up having living siblings. After a while, I asked the supervisor if any families had asked about us. I assumed that parents were talking to each other and maybe some of them had questions or wanted to pass on condolences. She told me that no one had asked and then said that she had instructed the teachers that if anyone did ask, they were to say that it was "a private family matter" and to please respect the family's privacy. My head kind of popped off at this point. I very firmly asked her to tell the teachers not  to say this. I wanted people to talk about it, with me and with each other. And I didn't want gaps to be filled in with gossip and guesswork. I told her they could give out my email address. It was starting to feel like a dirty secret. He is our son, a baby brother who died, not something to be ashamed of and hidden away.

To me, this is SO not "private". Toren would have been a member of this community. He was  a member of this community for a short while. Everyone was looking forward to meeting him. And there's just nothing private about being pregnant and having kids. You are very visible, and people participate in the joy and excitement of it, even complete strangers (whether we want them to or not).

A few weeks ago, our daughter asked to bring Toren's picture to daycare to show friends. When she got home later in the afternoon, she told me that she had "lost" the photo right after I dropped her off but then one of the teachers had found it for her at the end of the day. Peter filled in that blank by saying one of the teachers had put it up on a shelf because it was so "special", even though I had instructed that person that it was to go in her cubby so that she could get it whenever she wanted. I called that teacher the next day to find out what happened and she got very flustered. I tried to be as "non-threatening" as possible and gently explained that we have many copies of that photo and that, yes, it's special but it's ok if it gets a bit ruined. Then she said that new teachers didn't necessarily know the story so I told her to please go ahead and tell them because it's not a secret. Then she backtracked and said they do  know. So I said great, that's great (....but do they know or don't they?? Argh!)

It's gotten to the point where I am asking Peter and my mom to drop our daughter off because I can't bear to go there any more. I used to participate in field trips and attend family social gatherings but now I can't. They are uncomfortable which makes me uncomfortable. There is a huge stigma around having a stillborn baby and now I can see why. I recognize my participation in that.

I know I have to do some education with the group there. I just can't face it. Sometimes I'm pissed off that the onus is on me, other times I just feel too defeated. But then I think, someone else's baby is going to die, because now we know that babies do die, and if I can help another family, then I must do it.

Wednesday, October 17, 2012

Technology

How lonely would I be in my grief without without my computer and my cellphone. I dread to think. I can see how having a stillborn baby can be an isolating thing. People avoid you for different reasons. They don't know what to say. They feel helpless about what to do. Their own lives have challenges and they may be just about hanging on, so they don't need any added reminders, personified by you, a babyloss parent, that terrible things can happen. I understand all of that. It doesn't mean I like it or that it doesn't make me angry. But I understand it better now.

When we got to the MISS conference in Arizona, we were fortunate enough to meet "Dr Jo", as she's affectionately called, the woman who started the MISS Foundation because of her own experience losing a baby to stillbirth. I spoke with her briefly on the first morning and a lot of things came pouring out of my mouth - the people who have abandoned us at the worst time in our lives, and how many other families we have met going through the same thing. She probably gets that all the time! People wanting to share their stories with her in the first three minutes after saying Nice to meet you. She said, "We have a saying here - friends become strangers and strangers become friends."

Monday night, for the Global Wave of Light, we took photos of our candles and tweeted them out, posted them on facebook and blog, and sent them around by email. It was fun to share our candles with other families and see their candles. I'm new to twitter and have been surprised at how I've been able to connect and share with other people on the topic of grieving. I was on fb before Toren died but had to suspend my account afterwards because I just couldn't face any of it. I reactivated it on Mothers Day to solicit donations and raise awareness, then had to disable it again before my birthday hit. My birthday was one of the hardest days since he died and I knew I couldn't face any chirpy birthday messages. Nine months on, I feel like I have the fb thing sussed. I have it set up as a grieving tool. The only things I get in my news feed are posts by other bereaved people, or from the groups I have joined that deal with loss. Someone recently started a private group for Canadians whose babies have died (there is one for Americans - or from anywhere, really - that I also belong to). I communicate with women all over the country, sharing experiences, supporting each other and having a safe place to express fears, sadness, anger, doubt, love. All the dodgy emotions! All these things are outlets for my grief.

I do have a local network of bereaved parents whom I meet with whenever I can, and I also attend a support group every two weeks. When we are not together, we call, email and text each other, soliciting and offering support, venting, exchanging information, making plans or just larking around. It doesn't mean I don't sit alone with my grief when I feel the need. Trust me, I have plenty of that. But when something difficult comes up, I don't have to face it alone if I don't want to. And of course, there are our old friends who are sticking by us, however difficult that can sometimes be, logistically and emotionally. They continue to check in and be a support to our family. Sometimes I forget that because this grief can be all-consuming. When I am able, I try to let them know how grateful we are and how loved we feel.

Last weekend, I used my phone the old fashioned way to talk to another bereaved mom. She lives in Newfoundland. Her baby daughter died in August, and she posted a message on one of the online support forums asking if anyone wanted to talk. It's almost not possible for us to be further away from each other in this country! But once we figured out the time difference (three and a half hours, not so bad), we called each other and spoke for an hour and a half. Even though we were discussing a very sad subject, the deaths of our children, it was so wonderful to connect with another person going through the same thing. Someone who understands, someone who I can help by listening and who helped me by listening to my story. She has one of those cute Newfoundland accents so now I hear that when I read her online posts! There was nothing going on in her area for October 15 so I asked if I could include her baby's name on our memorial the day of our walk. Afterwards I took a photo of it and sent it to her.

I feel so much gratitude that, where ever I am, geographically, or on this grief path, I am not alone. That is what has made the biggest impact in coping with Toren's death. Distance means nothing, connection means everything.

Grief Control Room

Monday, October 15, 2012

Wave of Light

Here are our candles for Toren and some of the families we have met because of him.






New Orleans

I was thinking (at 2am) about the trip Pete & I took to New Orleans. We went with his parents and his brother and sister-in-law. This was before we had kids and before Katrina. We had a great time and did all kinds of fun and interesting things - toured the Mardi Gras warehouses, visited a couple of plantations and saw slave cabins, took a boat tour of a swamp and also along the Mississippi River.

But mostly I was thinking about how, because New Orleans is below sea level, people have to be buried above ground when they die. We visited a beautiful cemetery with all these statues and structures crammed together, very different to what we have here. I remember there was a family there and their baby was trying to crawl on someone's grave stone, someone long dead. The parents looked very self-conscious about it. They wanted the baby to have some freedom but were telling her, very loudly so people could hear what good parents they were being, that the structures were not for climbing. At the time, I remember thinking it was ok to let the baby climb, and that it represented the cycle of life. I still feel that way now.

A babyloss mom recently tweeted something like, "Death date, birth date, due date. Should be the other way around." Toren died before he was born, which was two weeks before his due date. He was cremated three days after his due date. Cycle of life, you bet. Baby crawling on a grave stone, not a problem. Grandmother, Toren's Lola, wearing her baby grandson's name and birthstone on a necklace? Not ok! Not good no no no no no.

It doesn't help that I now believe that my son's death was preventable. It strengthens my resolve to work towards eliminating preventable infant deaths. I'm only beginning to know what that work might look like but I do know this much - I'm not alone and we won't be deterred.

Lola's necklace for Toren
Mardi Gras warehouses where they store parade floats


Slave cabins on the Laura Plantation
St Louis cemetery No. 1

Friday, October 12, 2012

Images from Arizona










Healthy Hello, Healthy Goodbye

I was going over my notes from the MISS Conference and I'm still in awe of the New Zealand Sands presentation which I blogged about here. Reading what parents had to say about their experience bringing baby home is such a contrast to what happens here in Canada, or at least, the corner of Canada I live in. It doesn't mean parents in NZ don't grieve, it just seems less baffling, the whole grief process.


Of course it stirs up all kinds of thoughts/emotions/reactions about my own experience with Toren. Learning about how natural it is to bring babies home in NZ - and how it affects grief - has helped me understand my own grief a bit better. It also gives me...a friend calls it "grief envy". Sure, why not. Pile it on.

Wednesday, October 10, 2012

The Vital Importance of Grief

epiphany: (noun)
: a usually sudden manifestation or perception of the essential nature or meaning of something (2): an intuitive grasp of reality through something (as an event) usually simple and striking (3): an illuminating discovery, realization, or disclosure
I was sitting in a session at the MISS Foundation conference last week when I started to think about the miscarriage I had before I had Toren. In August 2010, we had our first OB appointment when I was 17 weeks pregnant. No heartbeat could be found, so we were sent to the hospital for an ultrasound which confirmed the dreadful news. I can't bear to think about the details of that right now. The thing I was focusing on in the session at the conference was the fact that I didn't grieve that loss. I've always known that on a rational level, but until now, I didn't realize what it really meant. As I know now, it has had enormous repercussions. 

The following May, I was pregnant with Toren. It was an incredibly difficult pregnancy. I was physically sick, but that wasn't it. I couldn't figure it out. I started therapy because I felt it was impacting my parenting of my daughter. I didn't want to talk about my pregnancy. Whenever anyone mentioned it, I would shut the conversation down. I kept thinking it was "hormones", whatever the hell that means. It got to the point where friends were saying to my belly, "We love you, baby!" because they thought I didn't love him. thought I didn't love him. Up until that moment in the session last week, I still secretly thought I didn't really love him. During my pregnancy, I would sneak into the bathroom to cry and to try to figure out why I was so unhappy. And to try to manage the guilt. I would picture telling people he had died.

I want to pause here to explain the term "rainbow baby". In the stillbirth world, a rainbow baby is the baby you have after your loss. I held a friend's rainbow baby this summer and felt incredible joy. I can't even really look at other babies since Toren died, but I could have held this one forever. I found the following explanation on babycentre (who knew that pregnancy site had a grief section?? Not me!). I wish I could credit the person who wrote it. 
"Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.
When someone  has a baby who is born still, there is a lot of focus on the rainbow baby. Everyone wants to jump ahead to the next baby, maybe because it's too hard to think about the one who has died. For babyloss parents, this focus on the rainbow baby can be incredibly frustrating. Even if they themselves are trying again, they worry that a new baby will mean the one who died is forgotten and they are left alone in their grief while trying to appear, and be, happy for the new baby. I don't know who invented the word mindf*ck but it definitely applies here!

So as I sat in that session last week sorting through the threads of all these thoughts, one thread started to be teased out. And it was this:

Toren was our rainbow baby. And our rainbow baby died.

Two feelings have crawled out of the bubbling pit of emotions that this realization has uncovered for me: Relief - my pregnancy with Toren, and everything that has happened since, now makes sense to me. Defeat - rainbow babies die.

The baby I had before Toren was a little girl. When she died, everyone was compassionate, but they said, "You will try again." and "You will have another one." I'm not blaming anyone. If you said this to me, do not fret. It is the culture we live in. But the message we unwittingly send when we are not truly mindful of what we say is - do not grieve. Move on. Forget. 

Since January 6, I feel like I know almost nothing. Since last week, the almost is in severe jeopardy. I can't help wondering, if I had grieved her properly, acknowledged her place in my heart and in our lives, how would my grief for Toren be different? Could I have bonded more with him during the pregnancy? Bonding is crucial to grieving. Grieving is crucial to healthy living. Would I have been able to look at him, to hold him? To not abandon him? Would the shock have been more manageable? Could I have made up for gaps in our care? A friend from Sands NZ told me, "When we know better, we do better." I wish I had known better.

On the last day of the conference, at the memorial service, I was finally able to acknowledge the daughter we lost before we lost Toren. It was incredibly painful but it felt right. She was named that night, but I can't share her yet. I feel so fiercely protective of her. If we had not had her, and lost her, we would not have had Toren. I'm still putting all the pieces together. Over time, more of the picture will emerge. I'm frightened. It's ok.


Nonprofit founder helps families dealing with grief | ASU News

 Here is a news report on the conference we attended in Arizona. I feel so fortunate that we got to meet "Dr. Jo" when we were there.
Tempe’s Fiesta Resort Conference Center was proud to host the MISS Foundation’s bi-annual international conference last week on "The Transformative Nature of Grief." The choice of Tempe as its venue was a fitting one, considering ASU professor Joanne Cacciatore is the founder.
Nonprofit founder helps families dealing with grief | ASU News

Tuesday, October 09, 2012

Monday, October 08, 2012

You're Not Helping!

I picked up this card at the conference and I don't know if it's helpful to friends of the bereaved but it expresses some of what I feel. Also I find the front of it funny! It's put out by Grief Watch. I haven't had a chance to check out their site yet but it's on my list.


Sunday, October 07, 2012

Conference Ends

Very, very sad to be leaving Arizona and all the beautiful people we've met here. The memorial service last night was so lovely....and intense! It's a shame some of the families were let down by the technology. Very hard but also amazing to be sending out love to Toren and all the babies and children we have met. An incredibly sad and joyful experience. (I hate to ruin the solemnity of what I just wrote by mentioning the Festival of Desserts afterwards! If anyone deserves a festival of desserts, it's this group.) Thank you to the MISS Foundation. There really aren't words to express the gratitude I feel towards everyone at MISS. If you are looking for a way to contribute to a community in need, please consider making a donation to MISS.

We will never forget the families we met here and the children we got to know through them.

I knew it - I didn't want to come and now I don't want to leave! We're leaving Arizona but giant pieces of our hearts are going to stay behind.

Saturday, October 06, 2012

Nine Months

Nine months today. Wow. This morning my mom and I went to visit the ofrenda table and she wrote a beautiful message to Toren. She had bought him a onesie when I was pregnant so she brought it to add to the display. It says I ♥ Mommy on the front. Then we had coffee and pastries outside since it's not too hot yet. 

The sessions are starting up soon so I can't write much more at the moment, except to say how grateful I feel to be here today. 

Friday, October 05, 2012

Taking Our Babies Home

In New Zealand, the practice of taking your baby home after he or she has died is normal and natural. Parents there cannot understand any other way of doing things. In Maori culture, it is almost unheard of not to bring your baby home for rituals and for saying goodbye. All the family and friends are involved and get to meet the child. In NZ, it is actually quite normal to bring any deceased family member home, whether baby, older child or adult. It doesn’t mean everyone does it, but people know it’s an option. It is not viewed as bizarre, morbid or unhealthy in any way. Our friends from Sands NZ gave a fascinating talk on the logistical, as well as the emotional, aspects of bringing babies home. They played a video they put together which shows bereaved parents talking about their experiences of bringing their baby home. Those parents spoke very lovingly, with a great deal of serenity, about what it was like to be able to spend time with their babies before saying goodbye.
As I sat through the session, I thought, Uh oh. Trouble. My experience was pretty much the opposite of what occurs in Maori culture, which has a rich tradition of welcoming stillborn babies into the family with grief rituals and celebrations that involve friends and family. My son was born in a hospital in downtown Vancouver. I didn’t look at him, I didn’t hold him, and I very definitely did not take him home. Peter peaked at him once. No one got to meet him. We didn’t have a memorial service. We have 2 photos taken by the nurse. No pictures of his mama or daddy holding him or of his big sister with him. No family portrait. It took us 2 months to name him and 3 months to pick up his ashes. After five months, I was sobbing on my bathroom floor in a complete panic because I didn’t know where my son was, what he looked like or what he felt like, and it was too late. His body was in ashes. The staff at our hospital were so kind and compassionate, I can’t imagine more caring people. But unfortunately they were not able to facilitate us interacting with our baby. They did not even recognize the extreme shock we were in. These are all crucial pieces in caring for newly bereaved families. We found out Toren had died when I was near the end of labour and I said to Peter, “We have to look at him, we have to hold him. Everyone always says they regret it if you don’t.” And yet when he was born, my brain shut down and I went into shock. It’s a natural response, but it needs to be managed. The staff did offer for me to hold him, once, at the very beginning. The shame and guilt associated with all this is hard to describe. The way it has affected my grieving, my relationships, my parenting, my understanding of myself – all hard to describe. I am working on getting all that down in words to share. For now I will just say, we need to do better for families. It’s not ok to unintentionally add grief upon grief because of ignorance. We need to catch up to other nations and other cultures when it comes to helping families cope with loss, especially the loss of a baby before, during or after birth. 

Reflections on conference day one

I’m up early for day two of the conference. Day one was incredible, so emotional and draining, but also inspiring. We got to meet “Dr Jo”, the founder of the MISS Foundation, the woman who started it all after her daughter was stillborn. She’s a ball of energy, but also warm and caring. In the lobby the first morning, I saw two men greet each other with a big hug and one of them said, "Wow, two years again already." They had their families with them and the children were presumably going to join the kids camp. Our daughter is too young for the camp but if we come back in two years, it would be great if she could be a part of that. I can’t think of anything more healthy than families travelling together to cope with their loss and connecting with other families going through the same thing. I think the children in those families have a greater chance of living richer, more meaningful lives, and being caring compassionate people, because of their experience of losing a sibling, and by having that experience guided by their parents and an informed support group.
The first session we went to was about "models of grieving". It was actually quite a science-y presentation from people who study grief. People study this! It’s fascinating to me. I thought the presenter approached it all quite respectfully despite not having a personal experience with losing a child. It does hit home though that unless your child has died, what you have to say about that experience is always going to be limited. He played some videos of parents talking about their experiences which I enjoyed seeing (and crying to!).
And then the whopper - a panel of parents talking about their grief some years on from when their children died. Truly, time has nothing to do with grief. All grieving parents know this. Some things become 'easier' but the milestones, the triggers, the love - all those things remain. Just so incredibly brave of people to get up on a stage and share their stories, their guilt, their shame, their contuining bonds with their children, all for the benefit of others. One woman talked about her son who was 16 when he died 20 years ago and his birthday was in June. She said she felt that she should have been visiting him and his wife and their children and wishing him a happy birthday in person. It made me think about all that's missing because he died. People say 'death is a part of life' but there is an order to it that makes sense. Your children are not supposed to die before you. I can never accept it. There will be another parents panel on Saturday and the couple we have travelled down with will be participating. I can’t imagine how they’re feeling about that but I’m looking forward to hearing them tell their story and hearing more about baby Scarlett. I cry just thinking about it! It’s good, get the ball rolling nice and early on those tears.
Yesterday, I did hit a very low point. My grief anger was triggered unexpectedly by something and I thought, Why have I dragged my poor family and my mom all this way for this? Why can't we just be happy and forget about all this grief shit?? After a good cry, and a debrief with Dr Jo, I am feeling better about the whole thing. These beautiful palm trees around me helped too.
After dinner, Pete & I went to a workshop called Creative Tools for Grieving. Art has been helpful to me in this process and it was great to get a new perspective on how art can be a grieving aid. I continue to be baffled by grief and anything that can help me sort through it is very much appreciated. The facilitators were two grieving moms who specialize in art therapy – that’s a very bare bones description of the incredible work that they do! One thing they talked about was the perceived “hierarchy of grief” where we compare grief experiences to try to slot people into a place where we can judge them on a kind of scale of sadness. This idea of a hierarchy means that some people’s grief experiences are minimized because they're not "as bad" as someone else's when in truth, it’s the nature of our relationship with the person who died, and what that means to us, that is important. As one of the facilitators put it: “The hierarchy is bullshit.” Love it!
In the evening, there was a band, and some food and drinks by the pool. A great way to relax after a demanding day. We got to spend some time with the women from Sands NZ, a parent-run organization that supports families who have lost a baby. They were just so supportive of everything we are doing with Still Life Canada, and told us some of their experiences in their work in New Zealand. Lovely people, so generous and kind and fun to talk to. The perfect end to day one.
I think today will be a mellower day, only two sessions so we can spend some time with my mom and our daughter. One session will be the NZ team’s presentation and then a session on how grief affects couples. For now, it’s early and I’m sitting between a fountain and this kooky plant:
A hummingbird just flew past on its way to some flowers. Time to think about breakfast.

Wednesday, October 03, 2012

Random Thoughts From Tucson

As the conference approaches, my mind has been sent into overdrive. Here are some of the places it went:
  • A woman by the pool was reading a book called Why People Don’t Heal and How They Can. I still don’t like the word “heal”. I’m not sick or injured. I feel broken but even that’s not the right word. There’s nothing to fix. People say, “Whatever doesn’t kill you makes you stronger” but that’s just one of those clich├ęs that I can’t stand. I wouldn’t say I’m stronger, just different. Whatever doesn’t kill you makes you different.
  • The other morning at breakfast, our daughter blurted out “I wish Toren didn’t die!” I don't know if she saw his photo on my phone or was just thinking about him. I said, yes, we’re sad about that. She replied, “It will be sad forever.” I’m glad she understands that but I feel so bad that it’s true.
  • In the children’s garden at Tohono Chul Park, there is a tree dedicated to a baby who died. She was almost 6 months old. I thought it was so interesting and lovely that her tree was in the children’s garden. Parents can and should tell their kids about her. She lived and her life is important, even if it wasn’t very long. Not long enough at all.

  • We went to Wildflower restaurant for dinner last night and there were beautiful hydrangeas by the door. I got hydrangeas for my first Mother’s Day without Toren so they always remind me of him. We had a really nice meal there.
  • A woman in the pool yesterday asked me if I am a superhero. Our daughter was pretending to be a superhero and so this woman asked if I was one too. I wish I was. I would spin the earth the other way, like Christopher Reeves did to save Lois Lane in the first Superman movie, and save my baby. Get him out earlier before the cord could get him. Pete the Engineer says reverse-spinning the Earth wouldn’t work (which class at Carleton U did he learn that in??) but I don’t care. I would spin the Earth or spin the universe, whatever it takes.
  • The heat here has been unbearable. We have learned to get up early if we want to be outside for any length of time or go out in the evening. Pete says the air is like having a hair dryer blowing in your face all the time. This thermos has become our prized possession. She wanted me to take a photo of it:
  • I saw a bumper sticker with an American flag on it and I was reminded of a bumper sticker we saw one time when Pete & I were driving through the States – “If it ain’t King James, it ain’t bible”. That made me chuckle. Also reminded me of my sister-in-law’s bumper sticker on her old car: “My karma ran over your dogma”. I still love that bumper sticker even if I don’t believe in karma anymore, if I ever did.
  • The Horse Whisperer was on while I was packing up for our move to our hotel and the conference in Tempe. I’ve never seen it before but I liked the tone of it – sad, angry, broken people doing the best they can. I didn’t finish it and don’t know if I ever will. I don’t know if I want to see the Hollywood ending. The other interesting thing (for me) is that Robert Redford had a baby boy who died of SIDS when he was only a few months old. That makes him special to me.
More photos of cool cactus plants: