Friday, November 30, 2012

Support Group Memorial Service

This week we attended our last support group of the year. I couldn't believe they aren't holding meetings in December, the toughest time of the year for bereaved people, but I have since found out that the facilitator is taking the month off, which she deserves. It's got to be a strange job listening to grieving parents tell their stories over and over again and to witness our tears and our anger and the reality of our lives. She's very compassionate and lets us run the show for the most part. When we go to the hospital, we often stop to look at the plaques people buy in honour of their children's births. It's a fundraising strategy for the hospital. We always look for the ones that say "In Memory Of".

It's hard to describe how the group works if you've never been to one. The facilitator always starts it the same way when there are new people, by laying down the ground rules - it's a safe place, tears are healing, no judgement about the different ways people cope. After that we do a round table where everyone tells their stories. When everyone has had a turn, the discussion just seems to happen naturally. If there are no new people, we skip the round table. One person will decide to talk about a particular topic and whoever wants to join in can do so. Then when that runs its course, there's usually a pause. Sometimes it can be quite a long pause but for me it's not uncomfortable. I'm just sort of thinking about what we talked about, or crying, or waiting for the next conversation to start. Maybe I will be the one to start it or maybe it will be someone else. Then eventually someone will start talking about something. I read somewhere that a good rule of thumb for a support group is that everyone reaches for their own tissues. When someone else hands you a tissue, it can send the message that you need to wrap things up, which no one ever intends, but it can stop the flow, not just of tears but of thoughts, storytelling, active grieving.

This week instead of the usual group, a non-denominational service was organized for people who have been attending. Poems were read and we lit candles and parents displayed mementoes and photos of their children. It was very emotional for me. I was kind of caught off-guard by how emotional it was, which is sort of dumb because it's to honour our children who have died so what was I expecting exactly? There was a couple there that we have been getting to know over the year and they brought a picture of their beautiful, perfect baby. He had chubby cheeks and looked just like his mother. He looks like he is sleeping in the photo. It was incredibly moving to finally get to see him. Another friend brought her baby girl's photo. I have only seen it a few times but it makes me so happy each time to see her. Happy and sad. I think most people's babies died this year although there was one woman there whose daughter died 10 years ago.

The presentation was a little clunky which was totally fine. They had never done it before for this group which seems incredible to me. I can't really criticize though because our own hospital doesn't even have support groups let alone a memorial service for babies who have died.

The service was in the chapel (which unfortunately is on the maternity ward (!) ) and then refreshments were served afterwards. A big topic of conversation was the holiday season. Most people there don't have any living children so there was talk of travel and of whether they would bother putting up decorations and a tree. We will be putting up a tree and doing many of the same activities but it's all going to look and feel different this year. One of the grieving mothers gave us a sparkly hummingbird ornament with a ribbon around his neck and the letter T attached. I love it and can't wait to put it on our tree.

Big thank you to dear friends who have been looking after our daughter so we can attend the group every two weeks. We know there are many people out there not getting the support they need and we feel incredibly well supported. Very lucky unlucky people.



Wednesday, November 28, 2012

Library

Bringing my daughter to the library continues to be an emotional workout every time. When I was pregnant with Toren, we would take out books about how babies are born, as well as books about becoming a big sister. I steered clear of books that positioned baby siblings as a nuisance and figured if that became an issue, then we could take those books out as required. She was very excited about having a baby and would lift my shirt up and say to him, "We're going to the library now, baby!" I had the 'baby welcoming' day lined up in our calendar and we were going to bring Toren together to get his library card. Peter & I are both readers and our daughter loves reading so I don't think Toren could have avoided becoming a book-lover in this household.

Going to the library used to be a really fun thing for us to do together and we would go almost every week. I still enjoy going with her but I always think - what's it going to be this time? Painful books on the shelves? Judgemental looks because I'm not being friendly? Or simply sadness because I'm constantly reminded of the plans we made for him.

A trip to the library is no longer just a trip to the library.






Tuesday, November 27, 2012

Stephen Colbert - Grieving Son & Brother

I'm a huge fan of Stephen Colbert. He's a comedian who plays a political pundit on his show The Colbert Report. When he was 10 years old, his father and two of his brothers were killed in a plane crash. In this interview with Oprah, he talks about his experience, and it's so obvious to me that what he has to say about happiness vs. joy has been shaped by his early experience of painful loss.

Oprah says something about him not grieving his family members until he went to college, and he talks a bit about that. Shock is a such a huge component of grief, and with him being 10 years old at the time and it was the 70s, and with 8 other siblings to take care of and how traumatic the experience must have been for everyone in the family, there was probably nobody really available to help him with his grief. It's sad to think about.

I still tend to think it's not really possible to "not grieve". I just see grief as being a very individual thing that changes over time. It's going to look different when you're 10 to when you're 18. In 11 short months, my grief for Toren has changed and I have no expectations of what it will look like in a year or 5 years or 5 months or like Mr. Colbert, in 30 years. Where I'm at is where I'm at with it.

Anyway it's so good of him to share his experience. It would be great to see an unedited version of this conversation. It's not the same as losing a child but there is definitely common ground that people walk on the grief path.


Monday, November 26, 2012

Staying Positive

One thing I don't waste a single moment trying to do is "stay positive". Even if I could figure out what it means, I probably wouldn't bother with it. There seems to be a huge emphasis on the idea of the power of positive thinking. If it works for you, fill your boots. For me, as the mother of a dead child, I will always believe to the core of my being that it's a bullshit waste of time and energy. Much better to just be real.

One thing that particularly bothers me about this idea of staying positive is how it assigns blame. I know too many women who are grieving a child and trying to get pregnant, who are being told that if they just "think positive" or "stay positive", it will all work out. So if it's not all "working out", well they are to blame because they're just not working hard enough on those positive thoughts. It adds to the guilt because it sends the message that we are in control of things that we are truly not. And the natural extension for me would be that I am to blame for Toren's death. If the power of positive thinking really worked, my son would be alive. It freaks me out that people promote these hurtful and unhelpful ideas. Again, I think this is one of those things that people say for their own comfort.


Memory making

I read something recently that talked about the difference between happiness and meaningfulness. It said that happiness was "present-oriented" whereas meaningfulness involves integrating past, present and future. Yesterday I got together with a group of bereaved parents to make some Christmas crafts. I'm anxious about what feelings the holidays will dredge up. Last year at this time, Toren & I were both getting quite big and excitement was building both for his arrival and for the holiday season. We were taking our daughter to a variety of activities and Toren was of course along for the ride. I'm drawing a blank about what else to say about that right now. My mind won't go there. For now I will just say that I had a great time yesterday getting together with a nice group of people to manage some grief, prepare for the holidays and tap into some creativity. We talked about everything under the sun, had some snacks and treats and ended up up to our necks in craft supplies. If I think about trying to find meaning in our situation, yesterday was about integrating past, present & future: remembering the past - our time with Toren; dealing with the present - support and craft-making as an outlet for the grief, as well as keeping Toren's memory alive; and looking to the future - building a community of people who share our experience and live in the same reality that we do. If 11 months ago someone had told me I could have fun doing that, I wouldn't have believed them, but I'm always surprised by how much a group like this can laugh.

Figuring out the glue was a major theme of the afternoon

The artists in the group impressed the hell out of the rest of us

Snooty reindeer stamp

I made some "nice" cards too!

Sad & beautiful cards by a grieving father

I'm not sure how we found space to actually work!

A mother expresses her grief and her creativity
Baby's hand print

Oops. Well, now I know how hard not to press.

The purpose of the day

Toren's Daddy's gorgeous hummingbird card


Sunday, November 25, 2012

Be Strong

Of all the irritating things people have said to me since Toren was stillborn (and it's quite a list), "Be strong" is one of the most common. Other variations are: "You are so strong." and "I don't know where you find the strength." I've heard this many times from friends and strangers alike. It's a pretty regular comment on the comfort circuit from what I'm learning. No other parent whose child has died has said anything to me about my supposed strength. It's one of those things people say because they think they're being "comforting" but it's obvious to me that they're saying it for their own comfort. The other night I was reading a grieving mother's blog and most of the comments afterwards were by other grieving parents. I like reading those because I like learning about how other people's experiences are different or similar to mine. And then there was the obligatory comment from a non-loss person who wrote something like, "I just want to say how amazing and strong I think you are...." Drives me f***ing bananas! Who is that statement for?

When people tell me to "be strong", I interpret it as either: a) Don't break down or go unhinged in front of me or b) This tragedy couldn't possibly happen to me, but YOU, you are STRONG, therefore that is why it happened to you. Depends on the day. I never, ever take it well.

I once sat beside a woman I had just met at lunch. I was talking very openly about Toren and didn't realize that the woman was getting uncomfortable. This was early on, not long after he died, so I hadn't figured out the stigma thing yet. I didn't know her, and just thought she was quiet. At the end of the lunch, I had to leave before the others and after I said my goodbyes, I turned to walk away and she blurted out to my back, "Be strong!" I turned around and just stared at her because now I was the one who didn't know what to say. It was such a bizarre moment.

When I hear these types of comments, it just makes me feel so distant from the person expressing them. I feel so weak and vulnerable since Toren died that when I'm told how strong I am, or when someone advises me to be strong, I either shut down inside or feel my anger rising. Maybe one day, I will ask the person to explain what exactly he or she means by "be strong". What is it that I should specifically be doing to comply with this advice? I'm really curious what people would say. Maybe someone would say, "Actually, my child didn't die so I don't have a goddamn clue what I'm talking about. Instead of presuming to advise you or cheerlead you, I think I will just shut up and listen to what you have to say about your own experience. Maybe I will learn something."

Could happen. You never know.

True strength, I think, comes when you can feel the grief without trying to get away from it too quickly; when you can grieve publicly without self-consciousness; when you can acknowledge your stillborn child without fear of upsetting someone. I have a long way to go before I can claim any genuine strength.


Medical notes

I ordered my medical notes from the hospital. The package should include the notes from our living daughter's birth, the baby girl we found out had died at 17 weeks, and our day in the hospital with Toren. They arrived last week and are sitting in the mailbox we have near the entrance to our apartment. How will I ever bring myself to open the package and read them??


Saturday, November 24, 2012

Dr Peter

Dr Peter Jepson-Young, for whom the Dr Peter Centre in Vancouver is named, was a doctor who died of AIDS in 1992. His vision for compassionate care of people living with HIV/AIDS has made the centre a leader in caring for the most vulnerable HIV-positive people. In his AIDS Diaries for CBC, he said, "There is no substitute for the ongoing involvement and support of caring people."

One of the many interesting things about this article is that they talk to Dr Peter's mother about how her son's death changed her life. She talks about how volunteering at the centre helps her cope with her grief.


Wednesday, November 21, 2012

Dream

The other night I had a very vivid dream. I was driving along a country road, very overgrown along the sides with vegetation. Very green and leafy. Someone was driving behind me, a friend following in a car but I don't know who it was (or who it was supposed to be). I decided to try to go really fast. I wanted to test myself, to try to not be scared. In real life I'm usually a very controlled driver. I was at the top of a hill when I made the decision so I thought, perfect. I can go really fast from here. But when I started travelling down the hill, the car wouldn't speed up. I wasn't going super slow, just reasonable. A couple of cars were approaching up the hill towards me. One decided to pass the other. A blue expensive-looking car. He passed and got back into his lane just in time. He just missed me. I wasn't really afraid he would hit me, I just thought the timing worked out perfectly. Then I thought, if I had managed to get my speed up, we would have collided. So then I thought maybe I wouldn't try to go faster.

I got to a town. It was very quiet. No one around. I could hear birds singing. I can still remember the sound of the birds as I type this. The trees were bare of leaves except a few very green ones here and there. Maybe buds. Spring? It looked like it had just rained. It was peaceful. I wasn't frightened. No one appeared.

I wrote the above blog post this morning, and in the afternoon I saw this plaque.

Monday, November 19, 2012

The Culture of Happy

The other day, I was reading the letters section of a magazine and the person writing said that she teaches her children that the most important thing in life is to "be happy". Be happy? Yup, I'm all for it. If I could just be happy, why wouldn't I? Why wouldn't all the people I'm meeting now who have lost a baby? Are we just being difficult? Are we "wallowing" (whatever that means)? Do we want the whole world to feel sad because we are sad? Are we against happiness??

The problem with putting all your energy into just being happy is, what happens when something sad happens? How does the advice to "be happy" help kids understand that when sad things happen, you are supposed to feel sad about it? There is a range of emotions we are supposed to feel in life and happy is just one of them. Yes it's the hands-down favourite, no question, but it's not the only one. Wouldn't it be healthier to help kids identify the feelings that come to us as a result of things that happen in our lives which are out of our control? I hate the idea of telling my daughter to Be Happy and then have her unable to cope with the difficult things in life because the idea of happiness-above-all-else is in conflict with how she's actually feeling. Why not teach people to acknowledge their feelings and to try to live authentically? I think that is the way to health and true happiness. It's like the difference between having a good time and feeling deep and meaningful joy. Yes there is room for both in life, but I think sometimes the focus on one means we diminish our chances for the other.

When we were at the Lights of Hope event for our hospital, I was caught off-guard by how cheerfully everything was presented. The woman they chose to be emcee was cheerful and upbeat to the point of zaniness. It was quite jarring for me as a newly bereaved parent. I thought to myself, We can't be the only grieving people here. Probably a lot of people donate to the foundation when the hospital is able to save their family member. For example, they played a video of a young woman who had heart troubles several months after having a baby and she had to have surgery. It sounds like she went through a frightening and painful experience. Fortunately she survived and she was in the audience so they called her up to the stage with her daughter. It was very moving and they presented her with flowers. It sounds like she still has challenges but she definitely deserves every good thing that comes her way.

And then there was us. No one is going to film our story. There is no happy ending. Our baby died and because we wanted to help him make his mark on the world, we donated in his memory and asked friends to do so as well. We very much wanted to be at the celebration, we are grateful for being included, yet it's incredibly difficult to be the grieving people at a party. Debbie Downer, anyone?? Celebration is tough since Toren died, but we always want to make the effort when we can. Even receiving the invitation was hard. It talked about kicking off the holiday season, it mentioned festivities and it had a lot of exclamation points. For our family, the holiday season is something to endure, to get through somehow. We have to figure out how to have an authentic version of festivities for the sake of our daughter. I can't believe that there weren't other people there who were only there because someone close to them died, and that being there was difficult, however much they wanted to support the hospital.

Would it have been so terrible to acknowledge that some people were only there because they suffered a tragedy and are trying to find some meaning in that? Is it so hard to say we appreciate you being here and we will do our best to honour your loved one's legacy? Would it be so bad to have a more muted invitation, or maybe a separate one for families that you know are only being invited because something sad, and maybe even traumatic, happened to the them at the hospital? Am I trying to piss on anyone's fireworks? Nope. Just trying to tap into compassion for ourselves and for other people for whom the holiday season is a challenge. I think if you approach it that way, then the celebration part can be a truly joyful celebration.

When the CEO gave his speech, he talked about hope. He had a respectful, dignified tone. Was he thinking about the sad stories that often come out of the hospital?  Maybe he's been through difficult things in his own life. Maybe he's a naturally compassionate person. Maybe he's just good at speeches. Who knows. Whatever the case, it made me want to go up to him and tell him our story. Toren's story. To tell him how great the nurses and doctors were, that their compassion cannot be improved upon, but that there are also some things that need to change and that his speech about hope truly gave me hope that we can do better for families coping with a stillbirth. I almost did it too! He walked right by me and I almost spoke to him. But I chickened out. I wish I hadn't, I wish I could have been a worthy mother to Toren in that moment, but hopefully there will be other opportunities to tell our story, express that hope, and have an impact for other families in a similar situation.


Saturday, November 17, 2012

Ballet Class

This morning at our daughter's ballet class, a family showed up with their newborn baby. I see this woman every weekend and I feel bad that I haven't spoken with her, but it's very difficult for me to meet new people now, especially new people who are heavily pregnant. When I saw them arrive, I felt a terrible feeling in my stomach.  It really doesn't make you feel like a good person when seeing someone else's new baby, and the aura of joy that surrounds that, makes you feel horrible. At the beginning,  it seemed to be mostly dads who had brought their kids to class so there was no reaction to this new baby. But eventually, the moms started to converge to admire and coo.

After class we bumped into a dad we are acquainted with in the neighbourhood and I decided to show him Toren's photo. He said, "Aw, so cute. How old is he?" I felt sure that he knew our story but I'm learning that people forget. Or maybe he never knew, who knows. When I told him what had happened, he said, "So sad..." and was very sympathetic. I said it's been a tough year. He asked when Toren was born. When I said January 6, he looked at me sort of stunned and said, "Both our kids were born on January 6. Two years apart." Pretty incredible coincidence. And it would have made a fun story if Toren had lived. So the day our son was stillborn, another family was celebrating a joyful double birthday. I don't know where to put that. Happy for them, devastated for us. I guess I won't bother inviting them to Toren's memorial service since they will be very busy that day.

Afterwards we took our daughter for a snack and it all came flooding over me and I started to cry. She asked, "Mama, why are your eyes wet?" I said I'm sad because I miss Toren and she said me too and got tearful as well. I suggested we have a hug and asked her if she wanted to dry my tears for me. So I gave her a tissue and she dabbed my eyes...which made the tears flow even more! Well, it was still a nice moment. I'm glad I don't always have to hide the tears from her. I think it's important for her to see that sometimes, and for us to share all our feelings as much as possible, not just the happy, easy ones.

Just spotted a headline that a train hit a school bus in Egypt and at least 47 kindergarteners were killed. My first thought -- after holy sh** -- was "...and wah wah wah I had to see someone's newborn baby at my living daughter's ballet class." Why do any of these things have to happen. I don't understand any of it.



Thursday, November 15, 2012

Lights of Hope

Tonight we attended the St Pauls Hospital Foundation's lighting of the Lights of Hope. It was a nice event but bittersweet for me. The only reason we were invited is that Toren died and friends donated to the foundation in his memory. For that we are truly thankful. We raised $4000 and it all goes to the maternity ward. The Lights of Hope event was a lovely way to reconnect with that gratitude.

Unfortunately, we missed the actual lighting! Argh! We were inside gathering our things and rounding up our daughter (yes it takes two of us to round up one kid - how would we have done two??) and by the time we got outside, the exciting moment (and fireworks) had passed. Still, we got to see the lights, there was a men's choir, free food from some local food trucks and complimentary hot chocolate from a nearby coffeeshop. It was actually a pretty cool setup.

There were some emotional moments for me. At one point the choir sang When You Wish Upon A Star, and it rips my guts out that Toren's dreams will never come true. Then we went to visit the lights up close and there is a tunnel with stars that's fun to walk through. It leads to the hospital entrance and our daughter wanted to go inside. It's where we walked up to enter when I was in labour with Toren. It felt uncomfortable to be back there but I wanted to do it. We stepped inside for a couple of minutes. It was weird to be there again but I've been wanting to go back. I don't know why. He didn't die there, he was only born there.

Then Pete came to get us and said he found Toren's name on a tribute list. So we went to see that and it was wonderful to see his name up there. At the time he was still only "Baby Boy" so that's who he is listed as, but it was great to see and to know that when people read it, they will know he was a baby. I don't know why that's important to me but it is.

Nice music from the talented jazz band

Treats

Lots of Christmas decorations everywhere

In Memory - Baby Boy D.

Hope for Change

Starry tunnel of love & hope

Good Sorts

I met Joan Curle at the MISS Foundation conference in October and blogged about the work she is doing with an organization called Sands NZ. Here is a short video showing that work in action. The piece is from a series on New Zealand television called "Good Sorts" which I think in Canadian roughly translates as "People Making a Difference, Eh".

It's hard to picture a supply room like the one in this video - with baskets, blankets, teddy bears and baby clothes - at our hospital, where Toren's mementoes were given to us in a ziplock bag. Other hospitals in Greater Vancouver have memory boxes which would be a step up.

Wednesday, November 14, 2012

Ashes

One day a few months ago, a wave of grief pounded me harder than any had up until that point. I was debilitated with crying and thought it would never stop. I felt pain on a much deeper level than I had ever felt before and all I wanted to do was lie on the floor and never get up. I thought eventually the tears would stop, they would dry up, and I would turn into dust and just blow away. I think I was reaching a deeper level of attachment and the grief was reflecting that. Then suddenly I thought, "We will be together again." It was the only thing that made a dent in the crying that day.

I'm not a religious person. I was raised in a religion but moved away from that in my teens. Since then, I have thought of my spiritual life as very personal and totally particular to me. No set of rules or buildings or figures could ever represent how I feel about my relationship to the universe, Mother Nature, God, the gods/goddesses, or whatever you want to call it. I find it hard to picture a literal afterlife, where I would actually be holding my baby again. But in that moment, that is the thought that helped me.

Since that day of desperation, I'm back to my more usual way of thinking. I don't think we will literally be together again in the way we would have been if he had not died. I'm sad about it, but also fine about it. I do believe we will be together in a way that's connected to the natural world. This is where ashes come in. I think to myself that once we scatter his ashes, he will be returned to the earth, and the same will happen to me when I die and my ashes are scattered. I started to stress a bit at one point because his ashes are in a plastic bag in a box on my dresser - what if they never make it back to the earth?? I told this to Pete and he asked if I would like his ashes mixed with mine. It's a relief to have this question settled.

I never thought that thinking about death and ashes would bring me any kind of comfort. But it has. My baby & I were a part of each other physically, and we will be so again one day.


Tuesday, November 13, 2012

Support

The biggest thing that has helped me in the last 10 months has been support from friends old and new. I'm grateful for the old friends who have been able to manage it. Since Toren died, people have told me I'm "amazing". I'm really not. I'm just a regular person that something amazing has happened to. But the friends who can be with me in my grief, be with me as a changed person; the ones who aren't  afraid to talk to me, to hear the awful truth and not be afraid of my tears or their own - amazing.

The new friends have turned out to be like a raft in a stormy sea. We listen to each other, we cry, we laugh, we rage, and we offer each other our own perspectives on a very confusing experience. It took me a long time to feel able to go to a support group. I was terrified of the idea of it, of speaking about my experience in front of strangers. A woman I was acquainted with told me, "Don't take on other people's shit. There are a lot of sad stories out there. Don't let them drag you down." At the time, I thought she was right. My fear used it as an excuse to put some boundaries on the idea of going to a support group. I would attend, for a short while, but I wouldn't get involved with the people there. I realize now that person didn't have a clue what she was talking about and shouldn't have presumed to try to influence my coping choices with her fear and ignorance. She has not lost a child (thankfully) and has never had to try to find comfort in community and a shared experience. It's a club no one wants to join but I'm so grateful to have found these friends. No one should ever have to go through a difficult life-changing experience alone. Fuck boundaries. I'm not afraid of people's grief, of tears, of sad stories. I want to take on other people's shit. It doesn't drag me down. It makes me feel less alone.

At the MISS Conference, I attended a presentation by a psychiatrist in his 70s who doesn't believe in drugs (!). He is not a grieving parent but he met us where we're at by sharing a personal story from his childhood. He talked about losing the person he most cherished in the world when he was a small child. I cried as he told his story. I thought about this vulnerable little boy, the same age as our daughter is now, and how she would feel if we suddenly disappeared with no explanation. We might die, yes, but she will be loved and supported through that. When he grew up he trained as a psychiatrist. After decades treating patients in all kinds of circumstances, he has come to this conclusion: "The only thing we have to offer each other is each other."

Today Toren's Aunt sent me this song by Pink which had me in tears. It expresses beautifully how I feel about him.


Monday, November 12, 2012

Ashley

We met Ashley's dad when we went down to Arizona for the MISS Foundation conference. A good friend in Vancouver had told me about a friend she had worked with whose daughter had died  in a car accident when she was 18. My friend was worried about him, wondering how he was doing. Because we were going to a conference for parents who have lost children at any age to any cause, it seemed crazy not to try to meet him. I don't normally go on holiday to meet new people. But this wasn't just a holiday and I wanted to meet him.

We arranged to go for dinner and on the drive to the restaurant, I reminded Pete that his daughter's name is Ashley. We met at the hostess desk and greeted each other like old friends. Big hugs all around. When you meet someone else whose child has died, and you know the only reason you are meeting is that you have both lost the most precious thing in the world, there is an instant bond which I feel is unbreakable. We sat down and gave the waitress our drinks order. After she left, he said, "Our waitress is named Ashley." I stared at him. Really? That's pretty neat. Then he said: "The hostess, her name is Ashley too." What!? We just looked at each other. Then we started to laugh.

One of the first things he asked me is if Toren had visited me yet. Not your usual small talk! Normally I would say, nah I don't believe in all that. But actually, I did have some kind of answer to that question.

It took us several months to decide on a name for Toren. I thought that if we named him, it would make everything worse and that if he remained "Baby Boy", it wouldn't hurt so much. Those of you who know grief will recognize this as shock and denial. It's normal but it's also horrible. I've read that it's a natural process to let the grief in in increments as our brains feel able to manage it. Finally, we made the decision that he needed his name. We realized he had a right to his identity, the same as anyone else. And we needed to know who we were grieving. Toren Edward.

The name Toren had popped into my head in the last month of my pregnancy, when we were at a Tori Amos concert. I wouldn't have named a daughter Tori, but I liked Toren for a boy. When we got home from the concert, I googled it and saw that, whew, it could be used as a name. I read somewhere that it means ship's mast, maybe in Hebrew? Edward is a name in Pete's family and his mom had suggested it before Toren was born.

For a long time, even seeing his name written down would cause me physical pain. I couldn't use it and just kept saying "he" or "our baby". It did intensify the grief but though life became harder, grieving got easier, if that makes sense. It was so hard, but it felt right. Pete said that's how he felt about it too. Eventually it got easier to use his name and now I can't shut up about him. But the day we named him, that night, in the middle of the night while we were sleeping, music started playing in our room. We both woke up, sat up in bed and were completely confused about where this music was coming from. It was so loud. I finally pinpointed it to a musical figure my mom had bought at a thrift store for our daughter a few years ago. Pete doesn't remember it as playing particularly loudly that night, but I remember it as sounding like it was amplified. It was loud enough to wake us up anyway.

One thing about this musical figure - it's kind of broken. When you wind it, it doesn't reliably play. Also, for the few years we've had it, it has sat on a dresser in our daughter's room. But this night, it was up on a high shelf, near the ceiling, in our bedroom. I didn't move it and Pete said he didn't move it. On my mom's most recent visit, I told her this story. Her eyes got very wide and she said she hadn't moved it either.

You can rationalize it any way you want. The thing is broken, so at some point someone had wound it but it hadn't played and finally the mechanism started moving that night. Friends had come over and someone moved it to keep it out of reach of little kids. Who knows. I'm sure there's a perfectly reasonable explanation. But still - you know? I now think of it as Toren's song. Whenever I hear it, it makes me so happy and so terribly sad.

So this is the story I told when Ashley's dad asked me if Toren had visited us yet. He gave me a look that said, Of course music started playing the night you named your son. He said he felt frustrated because although people had told him that Ashley had appeared in their dreams since her death, she hadn't yet "visited" him. I said our waitress is named Ashley, our hostess is named Ashley and you don't think she's visiting you?? We had to laugh at that one.

Ashley's would have been 23 this year. She was killed by a drunk driver. I think her dad said she was planning to go to university so she would have been finishing that up and then maybe she would have gone travelling like so many other young people do at that time in their lives. Or maybe she would have started work right away to save up some money. Her dad misses her terribly every single day.

After our dinner, he emailed me her photo. Beautiful girl. I enjoyed so much hearing all his stories about her. After five years, he has many stories about "signs", but even more than that, I loved hearing about when she was a young girl, and she and her dad would go into one of those kitchen stores, wind up the egg timers and run out of the store giggling together as they all went off.


Figure at Tohono Chul Park in Arizona

Sunday, November 11, 2012

Birth Card

I sometimes think of grief as a place. It's a safe place where no one says anything "helpful" like, "Oh you'll have another baby." or "It wasn't meant to be." This grief place is big and has different areas. There's a beautiful garden for memories. There's a special boxing ring for beating yourself up. There's a meeting place where other grieving people show up for their own reasons and spend some time together. The meeting place is not in a church basement or a hospital social work department - it's in a cool café with good decaf lattés, a huge selection of herbal teas, and killer baked goods. My grief place also has a model of our hospital that I sometimes go into to think about that day. Early this morning, I was in that model thinking about what I would do differently (besides saving him from his umbilical cord).

The day Toren was born we were only there for about 8 hours. His delivery was "easy". The physical part anyway. I walked in that morning and walked out that evening. If he had lived, that would have made a pretty cool part of the story. I could be one of those moms who annoys other moms every time I mention it! Tee hee. Almost everyone we encountered at the hospital that day was kind and compassionate and gentle. I have complaints about two people but they don't work on the maternity ward. In my hospital model, those people get fired. Or, on a good day, sensitivity training.

There are a lot of little things I start with changing in my hospital model. Things that could help make better memories for parents, and I assume would make it easier for the staff to be able perform their duties during a very difficult time. It can't be easy to have to face parents in that situation.

Everything that happens after baby is born is crucial to the parents' grief process. In my hospital model, the birth cards are very different. When parents receive them, it doesn't add to their pain. Here are some details from the birth card we received for Toren:


This morning I was mentally designing a special birth card, one that doesn't have a cute picture of a stork delivering a, presumably, live baby. I could be wrong, but I've never heard of a stork delivering anything else. It's cute when babies are born alive, otherwise it makes me cringe. Perhaps a picture of a flower would work. Or something abstract. Actually, I wouldn't even mind a picture of a teddy bear. He was a sweet little baby after all.

We actually got two birth cards. The first one said "Baby Boy" with my last name. We hadn't decided on a name when we set out for the hospital. He was more than two weeks early and we just weren't prepared. (Man, were we not prepared.) I think the standard practice is to use the mother's name. That's fine. When I mentioned that his last name would actually be Pete's, they very graciously offered to make us another one. When we received the new one, I noticed that one of the fields which had been left blank on the original was now filled in:


According to wiki: "The Apgar score was devised...as a simple and repeatable method to quickly and summarily assess the health of newborn children immediately after birth  The Apgar score is determined by evaluating the newborn baby on five simple criteria on a  scale from zero to two..."

I can't come anywhere near imagining what the person who filled that out was thinking. Do newly bereaved parents really need to see this? Is this supposed to be helpful somehow?

I'm going to make Toren a new birth card. I can start with the one they gave us: Name of the hospital. Date. Birth weight, length, head circumference. I will leave out the space for "Discharge weight". It's always left blank so why have it there? Time of birth. Add a picture of a hummingbird or a teddy bear in the corner. Name of obstetrician. Name of delivering doctor. Nurses names, from what I remember. When I wrote my thank you cards to send to the ward, I had to guess at spellings and I kept doubting that I had gotten all their names right. It's hard enough to write that kind of thank you card without also having to worry about names. I wanted them all to know how much we appreciated everything they were able to do for us.

At this point, for me, it's all about minimizing regrets and creating memories and having outlets for my sadness. At least in my hospital model, in my grief place, I will be handed a lovely birth card for our sweet little boy.


Saturday, November 10, 2012

Run

This morning I went for a run (I still relate more to what it used to be called - jogging. There's just something really uncool about the word jogging that seems to suit me better!). I had been running/jogging in the months after Toren died to offload some of the anger, but then I abandoned it when the anger subsided. I don't love running, but we live near the seawall so it's a convenient, free exercise during which I can listen to music. Also, I'm so perpetually out of shape that each time I run, I feel like I get a really good workout! This is my boneheaded way of turning lack of physical fitness into an advantage.

I've been grappling more with the anger lately so out came the running gear. I was reminded about what greeted me one of the first times I went running after Toren was born. I saw a man writing with chalk as I ran by, and it wasn't until I was on the way back that I stopped to see what he had written. It turns out, he was writing to me.




Friday, November 09, 2012

Friends

So many friends have disappeared. They don't know what to say to me or how to be with me. They make it about  me but really it's about them. They have difficult things in their life and I am just another burden that they can't face. For that, I feel compassion for them. It doesn't mean I'm not angry about it, or that I could even stand the sight of them right now, but I also feel that compassion deeply. I didn't know it was possible to hold all these conflicting feelings at once. I learned it when he died. These people are toxic to me right now and I need to avoid them as much as they need to avoid me.

Some friends have been amazing. What makes those people so real, so able to be with me in my grief? Maybe a loss in their life or maybe they were raised to have open, giving hearts. I think of these friends as truly healthy in their minds - they are not hiding from anything, they haven't put up any coping walls. I understand why people sometimes need to make those choices to cope. It's not a criticism of those choices, it's just an observation. The friends who can be with me, their lives aren't perfect - that's not possible for anyone - but they are more than surviving the hard things in their lives - they are thriving. It's good for me to be around these friends. I am incredibly grateful for them.

Then there are the friends I have met because of Toren. Friends in loss. Why are these people SO kind, so understanding, so easy and fun to be around? Why can't they be totally horrible so that I could completely hate this place called Grief? That would make more sense to me. Instead, I look forward to getting together with my new friends, even though the only reason we met is that he died. That's confusing. How can I continue thinking, I wish I'd never met you?

This morning my anger was triggered by the world's ignorance about stillbirth and grief. It stops me in my tracks and makes it challenging to be fully present for my daughter. I hate that. The 'pure' grief is hard enough to manage. To know that the burden is on me as the grieving parent to educate the people around me is so incredibly frustrating. But once the wall of anger collapses and the tears flow, I can tap into compassion and gratitude. It's a gift.


Thursday, November 08, 2012

Seeing

One of the 'interesting' things that happens when your child dies is that you see the world differently. Sometimes this happens literally! Yesterday, Toren's big sister found this leaf with a baby's hand print on it.


This new way of seeing things makes me think of the movie The Matrix, where Keanu takes the red pill (or is it the blue pill? I can never remember.) It opens his eyes to how the world really is and he can never go back. I don't believe that's really a baby's hand print, but I do believe that my life changed suddenly and forever when my son died. I'm trying to embrace all aspects of it, and seeing a hand print in a leaf is one of the easier aspects to embrace. The lighter side of death, loss and longing if you will. This seems to be a common experience among parents whose children die. Some people call them "signs". Signs that their child is still with them. Some people believe their child is sending them messages; for others, it's simply a reminder in nature and goes hand in hand with the sadness.

Like in The Matrix, the real world is no longer sugar-coated. I can never go back to the place where babies don't die after that magical 12 week mark of pregnancy, nor even after they are born if they are born alive. That part is not so comfortable. But my eyes have been opened to seeing other things that would not have been visible to me on that other path, the one where he doesn't die. I'd rather be blind to them and just have him with me, but since I can't, I will take the signs.

Grateful for the cookie and for the friends who shared it

Tuesday, November 06, 2012

Ten Months

Ten months since our beloved son was born. I don't know if that's a lot of time or only a blip. Since then, I've lived in a sort of time warp. We're still in the first year of this yet I feel like I've lived a few lifetimes. I feel old, and the wrong kind of wise. People tell me I look good (I assume they mean considering everything that's happened), but if they could see me as I have truly become, they might not even recognize me. I hope to live a long, meaningful life but then again, it seems a long time to live without your child. I miss him terribly. No real words for it today.

Some of you know, we've been working with two other families to start a non-profit society called Still Life Canada to raise awareness about stillbirth and to respond to what we perceive as an important need in the community. If you go to our website, you will see that there is not much there yet. But you can put your email address in to be notified when it goes live. There is also a twitter account which is more active. We meet on a regular basis to figure out what needs to be done to achieve the goals we have set. Last night we met and talked about the conference we are planning for next summer which will bring together bereaved parents and the healthcare community. I hope to be writing more about that soon. We also talked about activities to get us through the holidays. We are all facing a normally joyous season without our babies and no one is looking forward to that. Joy is a tough sell at this point. We will invite other families we have met to join in.

The more I learn about stillbirth and society's lack of understanding about it, the more frightened I get about what our group is doing. I have heard some truly dreadful stories in the last 10 months. Some of the stories are about people's experiences in various hospitals across Canada, other stories are about how parents have been treated in the aftermath, by family, friends, strangers, and the healthcare system. In my mind, there is a huge problem out there that is not being addressed. One of the scary things is, nobody really knows it, except for the families who are suffering. One doctor we heard from said she didn't think she heard the word 'stillbirth' once during her entire medical training. I've had people ask me to explain what I mean when I've told them Toren was stillborn. I don't know why I knew what it meant before he was born but I've since learned that it is not a well-known term. We heard from one person who said that when she went back to work after her child was stillborn, the HR person said, "Really? No one loses a baby these days." The ignorance on this subject frightens me beyond belief. And that's just about stillbirth, never mind what I could write about how misunderstood grief is.

The last 10 months I've been busy educating myself about subjects I never thought I could be interested in. Here are a couple of topics I'm following at the moment:

  • The American Psychiatric Association is preparing to release the latest version of its Diagnostic & Statistical Manual of Mental Disorders (the "DSM" as it's commonly called) in 2013 and they are planning to add bereavement as a mental disorder. Americans in my situation could be diagnosed as having a mental illness. You can read more about that in this article in the New England Journal of Medicine. Not sure if the DSM is used up here in Canada but it's freaking me out. Grief is not an illness, it's not a disease, nor is it depression. It is a normal, healthy reaction to a life-changing loss. That doesn't mean people don't need help with it, but if you diagnose grief as something else, people will not get the help they need. The MISS Foundation is fighting this tooth and nail because they worry that the families they serve will be misdiagnosed and prescribed medication when what they really need is support. You can read their open letter to the APA here. Their DSM information page is here.
  • The International Federation of Gynecology & Obstetrics (FIGO) had their 20th world congress in Rome in October this year. Ending pregnancy-related deaths is their core mission. Their next congress will be in 2015 in Vancouver. A past president of FIGO is an obstetrician working here in Vancouver. The international community in the field of stillbirth is coming to Canada. Canada is so far behind in the care of families coping with stillbirth. This can't go on. Are Canadian parents going to be a part of that through Still Life Canada? You better believe it.
So that gives a little picture of why we're doing what we're doing. But from a personal standpoint - why in the hell are we doing this? Why can't someone else do it?? I have heard how awful parents get treated even when they stay under the radar and quietly try to cope as best they can. One woman said her brother told her, "It's been two weeks, get over it!" Her child died and even that child's uncle doesn't acknowledge what she has lost, what he has lost, what their entire family has lost. So many parents grieve in silence. And here we are, planning to grieve out loud and in your face. We are gonna get creamed. But we have to do it. There's no going back now. As I said to one of the parents in our group, what have we got to lose besides all our friends and a comfortable place in society?

Change is coming.

A grieving father sorts it out

Grief work - with hearts!

Toren's big sister does her own grief work & makes a flower out of hearts



Monday, November 05, 2012

The Things People Say

Online, and in support groups all over the world where we have the "luxury" of having support groups, there comes a time when all grieving parents get to this topic: the things people say. It's been one of the most surprising things about this experience. Surprising and awful. Or maybe not so surprising if I think about it. People don't know what to say. And why don't we know what to say? Because when things are not talked about, nobody gets any experience talking about them.

Parents of a stillborn child choose not to talk about their experiences for a variety of reasons - they're in a social situation and don't want to bring people "down"; they don't want to cry in public; they don't want to be judged; and they don't want to have to listen to insensitive comments. Bereaved parents often preface their story about insensitive remarks by saying something like, "They meant well." or "People don't know what to say." or "They didn't mean any harm by it." I've been connecting with many people, online and in person since Toren was born, and it's so painful to hear the hurtful comments they have to endure, usually in silence. Until they get online, onto a private site, or to a support group. Private forums are busy with chatter on this topic.

In the summer, we went to one of our favourite coffeeshops and one of the owners said to me, "Didn't you guys have two kids?" Let's ignore the fact that this is a strange question to begin with. When I told him what had happened he very breezily said, "Oh well, next one". I still can't go back into that coffeeshop. I fantasize about going back and educating him about how babies are not replaceable - sometimes with calm, reasonable words, sometimes with a bucket of manure dumped on his head (when his mouth is open).

Well-meaning people will say, "Everything happens for a reason". It is one of the most painful and offensive things parents of stillborn babies have to listen to. All other thoughtless comments bow down and worship at the feet of this one. It's particularly hard if the parents go on to do good works in their baby's memory. No matter how many good works I do because of Toren, the world will always have been a much better place with him in it.

There is no formula for how to interact with a grieving person, just like there is no formula for how to live your life. A good starting point is to be truly present in the moment and approach things from your own experience. This means not resorting to clichés or platitudes. The only cliché that has turned out to be true for me is, "You find out who your friends are." (That is another post.) I have had people say to me, "It's not the same but when my father died..." They are sharing their experience with me in a genuine and sensitive way. I can work with that. In fact, I totally appreciate it. Also, try not to be too profound, either in person or in cards and emails. Let the grieving person find their own meaning, don't try to find it for them. And of course, even more important than talking is listening.

New Zealand Sands (Stillbirth and Neonatal Death Society) promotes a "three-point" model of care when working with bereaved parents in hospital, and I was thinking it could apply more generally as a starting point when interacting with a friend whose baby has died:

1. Slow Down: Don't try to rush the moment, however uncomfortable you feel. As Brené Brown said in her Ted talk: "Lean into the discomfort". It will be over soon (for you) and you will be glad you did because you will walk away having truly connected with someone. That doesn't happen often enough in life, and I'm pretty sure it's why we're here. Don't try to fill any silences with meaningless words. What you are talking about is HARD, so if you're feeling uncomfortable and completely unsure but you're being mindful and sticking with it, you're probably doing ok.

2. Active parenting: Parents of stillborn babies don't have a baby at home to take care of and raise but the need to "parent" is still very much present. Parents figure out how to respond to this need in the only ways available to them. It could be scrapbooking, it could be blogging, it could be going to the cemetery or a meaningful place every day. The best way to help them with this is to not discourage them from following their instincts, either openly or subtly. Never ask, "Are you sure you should be doing that?" or "Are you sure that's ok?" I have a friend who has a picture of her baby at her desk at work and someone asked her if that was a good idea. I'm still mad about that one. The biggest reason not to try to advise a grieving parent is - and I say this with love in my heart - if you have not lost a child, you have no idea what you're talking about. Never tell them, "Just live your life." because that is precisely what they are trying to do. It might seem strange to you, but for them it is part of a "new normal". It's healthy and necessary, and grieving parents all over the world do it. What you are questioning, they are probably going online, and to support groups, and talking about quite freely and happily (well, a sad happy) with other parents in the same situation.

3. Create memories: When someone dies, we turn to our memories for comfort. When that person dies before birth, a lot of the memory making has to happen afterwards. If you have something that can help parents with that, let them know. We are planning a memorial service for Toren but have precious few pictures, of him or of me pregnant with him, for our slideshow. Don't bombard the parents - very sensitively ask them if they would like whatever it is you have, whether it's photos or a gift you had bought for the baby. If they say they don't want it or tell you to get rid of it, don't! Hang onto it. They may at some point ask about it. Grieving parents are in shock in the beginning (days, weeks, months, there is no time frame) and might not know what they want until later. If the hospital would call me back, I could find out if they have more photos because of something our nurse said and because I know they hang onto things for parents for a long time. But that's another post (or probably another phone call, ug.)

So those are some thoughts to get us all started. Everyone is different but I think it's how you approach it that counts. If you are tempted to avoid (fake cheerfulness, avoiding the subject or the parents) or minimize (like my coffeeshop owner) or "self-soothe" (saying something for your own comfort, not the other person's), maybe think about why that is. Hurtful comments are always about the person saying them, but it's the grieving person who feels it.


Saturday, November 03, 2012

Milk

When Toren was born, all the talk was about stopping the milk from coming in. I took a drug, used ice packs and endured the kick in the teeth of producing milk with no baby to nourish. It wasn't until a couple of months later that I started thinking I wish I had considered pumping and donating it. At the hospital, no one mentioned whether we could have donated his organs and I didn't think to ask until after it was too late. Maybe the milk could have filled that role. On Mother's Day, my milk came back in. (Yes, Mother's Day. The day before we got the final autopsy report.) I have read that you can produce milk for up to a year after a stillbirth. I waited for it to go away but it wouldn't. I decided to try pumping it but I wasn't sure what would happen - would it be a fruitless effort? How much could I expect to get? Would it somehow help with the grief or would it just add to my pain? This was the beginning of the milk roller coaster.

I called the milk bank to see if they could help me. I left a detailed message explaining my situation. Three weeks later, I got a chirpy message asking if I was still interested in donating. I didn't know what to make of it. I didn't know if the person had heard my message because if someone leaves a message saying their baby was stillborn, I figure the message in return should be a bit, well, less cheerful. I decided to drop it because I was confused and frankly, I was looking for a way to drop the whole thing (a recurring theme with this story). Then they called me back and I answered. Again, the chirpy question about whether I still wanted to donate. So I asked if she had actually heard my message - I didn't know if I was dealing with an "avoider" (someone who fakes cheerfulness when interacting with a grieving person in the hopes they can cheerful their way out of feeling bad) or if she truly didn't know the story. Anyway it turns out she was just someone going through a call list and when she heard my story, she was shocked but also very compassionate. (Note to milk bank - improve your message-taking system!) We spoke for a while and I asked if they had ever worked with anyone like me. She said no, and then she said, "I don't know if we would want to put you through that." This was completely baffling to me. I called them! So who is putting me through what exactly? I told her that I wished I had done it when he was first born because it would be something I could look back on and be glad that I did it. Helping myself through helping others. She paused and said, "I hadn't thought of it that way." I decided to drop the whole thing (theme alert) and said a very sincere thank you because she had been so kind and had tried to be helpful. So that was the end of that.

But the milk kept coming. Fine. At the beginning of August I started to pump. I needed to know. I pumped once a day, in the morning. The first session, I got 2oz in 20 minutes. Excitement! Then next day, 0.5oz in 30 minutes. Disappointment. Over the next 3 weeks, I managed to get my supply up to over 2oz. Did I mention roller coaster? We went to Whistler for our daughter's birthday and I continued to pump, neglecting to figure out how I would safely transport the milk home. Luckily Pete used his keen engineering mind to fill our travel mugs with ice from the hotel and put the milk bags in there. When we got back, I plucked up the courage to call the milk bank again and spoke to the same woman. She was very excited about it too and started the screening process. She asked me some health questions, all good. She asked if I had been to the UK or two other countries for more than 3 months between 1980 and 1996. Those countries had had trouble with mad cow disease. Nope! ....oh wait. Actually, yes, I had been to the UK in 1996 for more than 3 months. They could not take the milk. Devastation. Intense, sobbing devastation. I felt like a complete f***ing loser. Again.

A supportive friend told me about Human Milk 4 Human Babies, an organization that helps donors connect with families in need. I decided to post my story on there, including why the milk bank could not take it. I mentioned that I had nursed my daughter for 13 months and that she is in perfect health. I also mentioned that the milk bank had asked if my daughter would take the milk so how strict could that guideline possibly be. I checked the site frequently to see if anyone would respond. Nothing. I saw that HM4HB had posted an "inspirational" story about another mom, one with a living baby. I read this while I was at the grocery store. Again, feelings of devastation. My offer was just sitting there like a pathetic abandoned puppy, but other moms whose babies were alive were being inspirational and getting a response. I ran to the bathroom at the grocery store in floods of tears. (Mental note - mind where you do your grief work, make sure there is a bathroom available!)

Shortly afterwards, I saw that someone at HM4HB had re-posted my offer with some very compassionate words. A few responses came in, a few "likes". Then an administrator contacted me to say my facebook settings were such that people could not send me private messages. F***ing fb. I had deactivated my account when Toren was born because it was just too intense for me (this is a recurring discussion in the online babyloss community - fb and how it adds to the grief). I had reactivated it because that was the medium that HM4HB uses. So I changed my settings, not realizing that HM4HB is not a private group. Everyone would be able to see my post. Friends (and "friends") and strangers alike started to comment and "like". It was overwhelming support, but I felt totally exposed and embarrassed. I thought only people looking for milk, and donating milk, would see it and that was already too big of an audience for what I was trying to do. Out came the tears, down went the roller coaster. And amidst the responses, nobody came forward to say they wanted the milk. I decided to just avoid the page and give up. (One ignorant person who thought they were being helpful (those people always do) commented that every child has a "specific purpose" in life. I find this completely offensive - the idea that my child's specific purpose was to die before birth so that I could provide milk to other babies. I feel too angry about it to try everyone's patience by responding to that at this time.)

At this point, I decided to try to wean. It made no sense to pump milk that no one wanted. That had its own physical and emotional component. I felt like a total failure. Can't keep baby alive in supposedly the safest place for babies. Can't stop the milk. Can't donate it. As a consolation, I decided to send the milk out to sea, like scattering ashes.

Then the roller coaster started to go up, towards a better view. Someone emailed saying she was having trouble producing milk for her newborn and the baby could not digest formula. Because of the way fb is set up, I didn't see her email right away. It was in a folder called "Other". Messages and Other? What the? Why not just put all the messages...ok never mind. I could write a brick about fb. We exchanged emails and then we spoke on the phone. She was so incredibly compassionate and listened to me tell my story. I could imagine her frustration at not being able to produce milk for her baby. There was no time for her to pick it up before we went to Arizona for the MISS Conference, so we decided to touch base when we got back. Back and forth, weeks passed, and then yesterday they came. Blissfully happy parents, gorgeous squirmy baby. I showed them Toren's photo. I wish I could say I was the picture of grace and poise and was able to hold baby Valentina and enjoy her perfect babyness. It's still hard for me to be around babies. The mom emailed this morning, worried she had offended me and made me sad by bringing her baby. She said she hadn't thought it through and it didn't hit her until afterwards. Not having Toren here with us makes me sad. Having to show people his picture, instead of being able to introduce him, makes me sad. People having an authentic connection with me makes me happy at a very deep level, where it counts. And I am floored when it happens with complete strangers. These parents clearly have big open hearts and that is a wonderful thing. We are both moms who love our babies and are just doing the best we can with a difficult situation. Yesterday it was clear to me that the gratitude was flowing in both directions.

If I encounter grieving moms who are considering donating their baby's milk, I will be able to tell them my story. It's not straightforward or smooth and parts of it are really hard. But there are babies out there who need milk and mothers who are looking for outlets for their grief and ways to find meaning in their loss. It's a shame that I was not able to connect with this family sooner because I would have continued to pump and could have given baby Valentina more. Maybe someday, milk donor organizations and technology can all work together to make it easier for grieving moms who want to donate, and families who need milk, to help each other.

I did save a couple of ounces of Toren's milk to mix with some tears and send out to sea when I feel ready.

ps. if you are nursing a newborn and you have a good supply of milk, please consider donating, either to a milk bank near you, or through HM4HB.


Thursday, November 01, 2012

When Bad Examples Happen to Good People

Yesterday I picked up When Bad Things Happen to Good People (the book, not the cassette tape). It was written as a result of the death of the author's beloved son to a terrible disease that caused great suffering. The author writes about his loss, but also tells many other stories of loss to illustrate his points. In one example, he writes about how modern science has made it possible for babies who would otherwise have died at birth, to live into adulthood. If that person had died as a baby, the parents would quickly try to "put the loss behind them" and look to the future. But if a baby is born with some kind of condition that can be treated by modern medicine, he or she may grow into adulthood, get married, raise a family, become a doctor or a teacher or a poet, but then die early because of their condition. And he writes that now the death causes "more than just a few days of sadness".
"It is a shattering tragedy...and a profoundly saddening event..."
The message to me is - Toren only deserves a few days of sadness. I need to put this loss behind me (where ever that is). What I am feeling - shattered, and profoundly sad - is wrong.

This is a book that is read by millions of people. I can see why. It's one of the top titles that people turn to in difficult times to try to make sense of their loss. But that particular example does not help me! And I don't think it helps people understand the magnitude of loss when a baby dies. How can I criticize another grieving parent, especially one who has helped so many? Great, one more thing to feel bad about.

I will try to finish the book but my trust has been severely dented. Rabbi Kushner, thank you for your wonderful book but please rewrite this example!