Sunday, September 30, 2012

Crossing Borders

When we went through U.S. customs on our way to Arizona, the guard was very chatty. Friendly, but very down on Phoenix. He couldn’t figure out why we were going there. And he proceeded to tell us all the things he didn’t like about the place (included in the list: his wife’s family is from there! Tee hee.) I could feel it building inside me – the desire to tell him WHY we were going to Arizona at all. It got stronger as Peter politely listened to him talk about sports teams and restaurants. Finally, standing behind Peter, in a small voice I said, “We’re going to a conference.” He continued talking. Oh man, he didn’t hear me, argh! I stepped out from behind Peter, and said in a louder voice, “Actually, we’re going to a conference.” Without interrupting his stream of talking he said, “Oh, what kind of conference?” I told him it‘s a conference for families whose children have died. I said our son died in January. The guard’s whole demeanour changed. Big, long pause. He finally seemed to look at us, each one of us in turn. And I looked at him. I could see he was searching for what to say, so I helped him out a bit. “So that’s why we’re going there. The conference is in Tempe. We thought we’d go a few days early and have a little vacation.” I felt like all the bluster and masks were stripped away when he asked for Toren’s name. Then very genuinely, “I’m going to pray for you folks.” I told him how much I appreciated that. It was then I decided to show him Toren’s photo. I took out my phone and showed him the screen. He was stunned. I had told him our “son” died but I don’t think he was expecting to see a picture of a little baby. I didn’t do it to shock him, but to help him know who we really are and who he was praying for. And I did it because I am a proud mama who likes to show people photos of my children. That part didn’t stop when he died.
I’ve heard it from many parents of stillborn babies. They wonder if they should talk about their children, show photos, bring people “down” with their sad story. What I experienced the day I showed my baby’s photo to a customs guard was sad, yes, but it was also two people having a real conversation about real life. Some awkwardness but more importantly, a connection. Who knows what could come out of that conversation for either of us. I can’t do anything about the sad part and wouldn’t want to. It is  sad. But it’s also our family. And maybe interactions like that help me and everyone around me be less afraid of death, grief and an awkward conversation. Grief is a lonely place but we proved that people can meet you there for brief but genuine moments.

Thursday, September 27, 2012

A *Grief* Conference? Oh god.

As we get ready to travel down to Arizona for the MISS conference, I can’t help thinking, I’m not looking forward to this! I know I will be glad to be there and glad I went, but looking forward to? Nope! My mind rejects the idea of this conference, of attending it as a bereaved parent. I often still can't believe what has happened to our family. So this rejection of the conference, it's really a rejection of what we are going through. At the same time I’m curious about it and looking forward to being in a supportive environment where grief is the norm. It’s been hard to be in the “normal” world with grief. Hard, hard work. It always feels uncomfortable. I have changed since Toren’s death and I’m still figuring out how to be this new person. Friends are trying to figure out how to be with me as this new person. Some people can manage it, some can’t. Everyone is doing the best they can with a difficult situation. One person's "best" can seem not good enough. Being with other grieving people is easier right now. They might be complete strangers but you are in a moment together, no bullshit, no petty hang-ups, no stage-managing - just people having a real connection. I’m pretty sure it’s why we’re here, to make those connections. It’s incredibly empowering. I just don’t think anyone should have to die so we can have them.
The Still Life group is planning its own conference in July next year so this trip will also provide some ideas about what a conference in Vancouver could look like. Ideally, it would involve parents and the medical community coming together to discuss ways to support both those groups during and after a traumatic birth. One of the MISS conference posters says, "This is not about professional detachment." 

I told Pete there will be grief yoga available at 6am. He responded, "Six am?? I don't start grieving until 7." Ha!
The week before the conference in Phoenix will be holiday time. I'm particularly looking forward to the Desert Botanical Gardens. Desert....gardens??  That sounds magical to me. It’s not a “break” from the grief because that is always with us. But it’s more integrated than it was in the early months when we went to Hawaii so it should be a little easier to enjoy ourselves. 
Everything is changed. A conference is not just a conference, a holiday is not just a holiday. And gardens can be in a desert!

Love is Everywhere


Helping

I have had many friends comment that they wish they could help me or they don’t know what to do to help me. I know that most people, when they sat down to write their condolence email or card, were thinking, oh god, what do I say? It’s been such a struggle figuring it all out for myself and for my family that figuring it out for other people requires extra energy that I often just don’t have. I wish I could write the helpful-post-to-end-all-helpful-posts on the subject but all I have are bullet points. It’s just a short list. A longer version exists, but even thinking about it makes me want to stop before I get started. These may not even be in the top 10 (except for the last point, it might be #1), they’re just the ones I’m thinking of right now.
·         Read up on stillbirth and help raise awareness whenever you can.
·         Talk to your children about death. Help them know about Toren and his place in our family. Show them his photo.
·         Let your kids see you cry when you are sad. Hiding sadness and tears from children is like telling them it’s something to be ashamed of and hidden away. Feelings are for sharing.
·         Try not to be afraid of grief. This one is hard! I struggle with it myself. Try to feel it as much as you can when it comes, without trying to escape to a happier place too soon. We are supposed  to be sad about some things, as much as that sucks. That is part of the deal of connecting with each other.
·         Reach out to others.
·         Read up on grief. Try to file many of your grieving friends’ behaviours under Not Everything Is About Me.
·         Do not abandon your grieving friends, even though it may seem at times that they have abandoned you.
·         Let yourself be transformed by your love for a child who has died.

Sunday, September 23, 2012

Vulnerability

Love this talk by Brené Brown. She mentions all the things I am exploring these days - vulnerability, shame, authenticity, believing you are worthy, courage, compassion, connection. And she makes it entertaining!

Saturday, September 22, 2012

A Cradle Song

A Cradle Song
from Songs of Innocence
by William Blake


Sleep, sleep, happy child,
All creation slept and smil’d;
Sleep, sleep, happy sleep,
While o’er thee thy mother weep.

Friday, September 21, 2012

A Sibling's Grief part II

When I put our daughter in the shopping cart at the grocery store today, she looked at the empty seat beside her and said, “Hey, what’s this for?” When I was pregnant with Toren, I used to tell her that’s where he would sit. At the time, I wasn’t sure if she would still be riding in the cart by the time he was old enough to sit up in the seat. Today I could see that, yep, they would have sat together.
[Me]: That’s where Toren would have sat.
[Her]: If he had not died. (She’s getting better with the verb tenses.)
[Me]: That’s right.
[Her] (with glee): That would be fun!
[Me]: Yes, it would have been....

Uplifting


Wednesday, September 19, 2012

Sadness

An old, dear friend emailed me today to say his father died yesterday. Yes, our parents are supposed to die before us, but...WHAT?! The intense shock of it. I am still not fully taking it in. And - I don't understand this part - I didn't know what to say. I don't know what to say. I got to meet him, my friend's father, a long time ago but I hadn't seen him recently. We didn't speak about him very much. And yet, I can't imagine my friend without his dad, nor his brothers, his wife and baby daughter, his mom. How can they have suddenly lost such a central person in their lives? I feel the terrible shock of it.

Grief is the tool to help us through these experiences but nobody hands it to us gently. We don't willingly pick it up. We have to fumble around in the dark for it and then, somehow, it whacks us in the back of the head and we are sprawled face down on a cold, hard floor. And that is the starting point.

Sending you heaps and heaps of love, Jon.

Tuesday, September 18, 2012

A Sibling's Grief

When our daughter learned that we would not be bringing a baby home – after months of talking about the baby, taking books out of the library, telling her she was going to be a big sister and help with the baby, getting a “Baby Alive” doll for Christmas from Grandma and all kinds of preparation – she was distraught. When she had woken up that morning, I had said to her, “I think the baby is coming today!” She was very excited as she bounded off to daycare. Then when Daddy came to pick her up at the end of the day, he told her on the walk home what had happened to baby. Suddenly we were changing the story. She screamed and cried. She didn’t understand. She yelled, “I want our baby!” She pointed to my belly and asked if he was still in there because I still looked pregnant. I said, “No, there’s no baby in there. He is gone.” It was the first time she’s ever seen me cry and cry HARD. This was about half an hour after we got back from the hospital.  She screamed, "He wanted to meet us! He will be sad!", "Where is he?", "I want him!" It was like someone was ripping my guts out.

We hadn’t had a chance to discuss much about what we would tell her, how we would “present” it, how we would help her through it. And so began one of the most important jobs of our lives – nurturing a sibling relationship when one of the siblings has died. It took me many months to figure out a healthy way to grieve, let alone how I could help her with her grief. It’s been one of the most painful aspects of losing a child – the grief of the living sibling. Three and a half years old is pretty young to learn to live with loss.

Eight months on, she seems comfortable in her role as Toren’s big sister. The other day she said very firmly, “He is still my brother even though he died.” She is very proud to be his big sister. He would have loved her and been enthralled by her. He did get to hear her voice because she spoke to him often when he was inside the belly. She would say, “We’re going to the library now, baby!” and “Good night, baby!” and of course, “I love you, baby!” He would have heard her sing and scream and squeal and get frustrated and laugh. Something to be grateful for. When we went for his 3D ultrasound at 30 weeks, they played (kind of cheesy) music during the session, which she danced around to while he danced away on the inside. I was really looking forward to seeing them together.

He will not be waving – and missing her – when she goes off to her first day of kindergarten. He will not tease her good-naturedly when she goes on her first date. He will not be a sweet nuisance as she packs up for university. He will not be an usher at her wedding or dance with her at the reception. When her children look at photos of Uncle Toren, they will be looking at exactly two baby photos. I will never be ok with any of that. But she is teaching me how to live with it. It’s not her job, it’s not her responsibility, but that’s what’s happening. I am learning from both my children. And it makes me feel terrible for both of them.

Monday, September 17, 2012

If you need a good cry

I just watched this video of a father talking about his daughter. Powerful stuff.


My children are not suffering, for that I am grateful.

Things I have In Common with parents of two living children/Things that are Different

(Not exhaustive)
In Common
  • ·         Marvelling at how your heart expands to make room for that second child
  • ·         Taking pleasure in how similar my children looked at birth
  • ·         Nurturing a sibling relationship
  • ·         Trying desperately to juggle my divided attention between my two children
  • ·         Realizing how having a second child affects how you parent the first
  • ·         Two kids is more than twice the work!
  • ·         Keeping in check my desire to talk about both my children constantly
  • ·         Meeting other new moms to talk about our babies
  • ·         Being inspired by my children’s lives
  • ·         Being kept up at night by the new baby
  • ·         Being the mother of two children

Different
  • ·         Nurturing a one-way sibling relationship
  • ·         No complaining about my kids
  • ·         Wondering what to do about all the toys and equipment she has outgrown
  • ·         Deciding in social situations whether or not to mention my baby
  • ·         Hosting a brunch only for families whose babies have died – & having a nice time!
  • ·         Dreading strangers asking me about my kids.
  • ·         Dreading strangers not asking me about my kids.
  • ·         Being inspired by my child’s death
  • ·         Dealing with a world that sees me as the mother of one child

Sunday, September 16, 2012

Dr. Joanne's Recipe for Raw Grief

We're having our support group over for brunch this morning. This is what we'll be serving!


Also a baked omelet and roast potatoes.

Saturday, September 15, 2012

Portland Rose Garden

Here are some photos I took at the Portland rose garden a few weeks back:







Busy Saturday

We went shopping today and found the perfect picture frame for Toren's pictures. Finally we can get them up on the wall. It's such a relief. The more I look at his photos, the more I feel like I could just reach in and pick him up. People unfamiliar with grief might think this is unhealthy but I know it's the opposite. It's the bonding I've been working towards. Hurts like hell but it's the only way.

Our daughter had her first ballet class today. Actually, second. The very first one was a few weeks after Toren was born. Being back there again today, in that same studio, with the same teacher, I felt pretty grim. A pregnant woman sat beside me, twice - once waiting for the class to start, and then again when we went into the studio to watch the kids. In that Other Life, we could have chatted. There was also a family there that we are acquainted with. The husband came over to say hi and chat. Afterwards Pete & I couldn't figure out if he didn't know about Toren, didn't remember or what. He's a nice guy - actually, Lachlan's former co-worker. I was cursing the thief who took my phone because I would have shown him Toren's picture and then we would know where he's at. I might have to carry an actual photo until I get my new phone. Too bad nobody seems to know when the iphone5 is coming out! I guess we will be seeing that family every Saturday at ballet class so there will be other opportunities. (Side note - it was actually their little boy who was taking ballet, not their daughter! V. cool. Go, Billy Elliot!)

Busy day today, parenting two kids...

Thursday, September 13, 2012

Ben Okri quote

On the walls at Foundation restaurant:

The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering.

Wednesday, September 12, 2012

Good Question

At the library today, there was a woman sitting in front of us during songtime and her tshirt read:

HappiNess
whEre
aRe
YoU?

Tuesday, September 11, 2012

A Time & A Place

I had an appointment with my GP this morning. After we sorted out why I was there, she took the time to sit and talk to me for a short while. I know how busy her office can get so I appreciate her taking the time. I gave her Toren’s photos for my file. I told her a bit about SLC and what we are hoping to achieve. She didn’t say too much in response to this. Then I said that I was on my way to my next appointment which was with my psychologist. When I said this, she became much more animated and advised me to live my life. Everyone has difficulties in their life, everyone experiences trauma – “not like yours, but” – and I should just try to be happy in my life. In other words, permission to grieve: denied!

I decided I felt up to doing some gentle education, and she’s a very nice person, and very professional, so it was “safe”.  I said that I want to make sure that I grieve properly and fully, and that I felt my greatest chance of real happiness in the future was to make sure I attend to my grief now. I also said that no parent who loses a child ever gets over it, they just learn to live with it so this was what I was trying to do, for my own happiness and for my family. I don’t know how much of this was absorbed but I’m glad I said it. It was a friendly chat, not very deep, and I don’t know if it will influence her, and her practice of medicine, in any way. But it was good practice for me.

Every parent whose baby dies knows the frustration of having to defend and explain their grief over and over and over. It’s just part of the territory. I know that fear of grief in other people because I felt it so strongly myself in the first few days after Toren was born. I was terrified. Scared of how bad it could get. Then I had no choice but to let myself be pushed in.

That’s one of the reasons I started this blog. I want to immerse myself in my grief and let the outside world know about it without having to hear back. Nobody on the outside of this has anything to say about grieving the loss of a child that I need to or want to hear right now. In eight short months, I already get the gist of what the non-loss world thinks.

I told my therapist about all this but it was like preaching to the choir. I’m guessing it’s what pays her salary. We talked about how the world sends us the message that we need to be happy all the time and that sadness is a negative emotion, instead of just an emotion like all the others. It probably explains why I’ve had comments from people that it’s “still” so sad, as if they are surprised that they don’t feel happy about it yet. I can NEVER feel happy, or anything other than sad, about my baby boy’s death, but that doesn’t mean that I can’t ever experience happiness about other things in time. 

Two doctors’ appointments, two totally different experiences. I had had a full day by 11:30 in the morning! Then my purse got stolen.

At least I ate a good lunch

Went for lunch, purse stolen. Phone, wallet, car keys, house keys, gone.

I don't need this!

********************


It's a few hours later and Peter is at the key cutting place getting new keys. I'm doing as much card replacement online as I can. I will have to go in to get a new driver's license. Care cards have already been renewed (mine + daughter's). The guy had already bought gas by the time we cancelled the credit card. My bike key was with my house keys so it's going to take some effort to liberate my bike from the bike room, ug.

My first thought when I realized my purse was stolen was this: at least my baby's ashes aren't in it. What the?? My mind jumped back a few months to when we picked up Toren's ashes. It was an extremely stressful day. I had been putting it off for weeks because I couldn't face it. I figured his ashes were safe at the funeral home. But then I started feeling guilty that we were neglecting him. On the day we decided to get them, I was a basket case trying to decide whether to let Peter go pick them up on his own or whether to go with him. Finally I decided to go with him and when we got to the funeral home - calmness. We were taking care of our baby. We were finally being good parents to him. I put the little box of ashes in my purse and we went for coffee. Often when we go for coffee, I reserve a table by leaving my purse at the table and going to order my coffee. I know - dumb! I didn't do it that day. I kept my purse very close indeed, almost as if I were carrying, well, a baby. So when my purse was stolen today, I was just grateful there was nothing truly precious in it.

One thing bothers me - when the jerk who has my phone turns it on, the first thing he will see is a picture of my beautiful baby. He doesn't deserve it.


Monday, September 10, 2012

Grief

When Toren was born a few hours after we found out he had died, I remember thinking, “Thank god that’s over.” I didn’t realize, it was only just starting.

Having a stillborn child has been a very confusing experience for me, among other emotions. After he was born, I went into such terrible shock, I didn’t know what to think. I didn’t know if I was his mama. I didn’t know if I was supposed to think of him as my child. I didn’t know what I was supposed to do about it.

At that time, I didn’t know the importance of grieving. I didn’t know that I had to learn how to grieve. And I didn’t know that you can’t stop it. I will never accept that my baby died, but I will accept the grief.

It’s been eight months since our son died. The first eight months of our lives without him. The shock is only just starting to wear off and the full implications are making themselves known. My husband, Peter, was talking to another bereaved father whose daughter Amelia died at birth last year.  He said someone asked him if he was able to put his loss behind him. He replied that Amelia’s death is like a road that stretches out in front of him. Peter said this is how he feels about Toren’s death, that it stretches out ahead of him for the rest of his life. I tend to think of it more like the sky – it covers everything I do.  We are both ok with this.

The sad truth about losing a child is you never get over it, you never get past it, you never put it behind you. You just learn to live with it. I feel like it could take my whole life to learn how do to this.

The healthiest way to move forward with a loss is through remembering. I have learned this through talking with other grieving parents, from my own experience and from what I have read. When someone dies, you don’t stop talking or thinking about that person. Their photos and letters become like treasures. The most important part of them, the part they left with you, is indescribably precious.

But how do you “remember” someone who didn’t even have the chance to take his first breath? For parents of stillborn children, creating memories mostly happens after  they die, not before like everyone else. I am creating memories in a few different ways which I will write more about in time.

One way that many families try to cope with their loss is to help others. Our family has joined up with two other families to start a non-profit foundation to support anyone affected by the death of a baby during pregnancy or very shortly after birth. The organization is called Still Life Canada – Stillbirth & Perinatal Death Education, Research & Support. After sharing experiences, we came to realize that services and support are lacking in Vancouver for bereaved families. Working on this project is an outlet for our grief. Currently we are working on registering as a charity but we’re also forging ahead with fundraising, educational and memorial events. You can sign up to follow our activities at www.still-lifecanada.ca. Or if you’re on twitter, @StillLifeCanada. I will blog more about it as we progress.

On the ferry

Two other moms here in the kids play area, both with baby girls. The moms are chatting with each other. One baby is 7 months old and the other is 9 months. So Toren would be in between. I want to ask the moms questions. When were the babies born? How much did they weigh at birth? Then I could try to figure out how big he would be now and what he would be doing.

Approaching terminal, time to head down down down to our car...

Otter Point

Photos from this morning




Sunday, September 09, 2012

Remembering & Forgetting

We’ve been away for the weekend to remember our friend Lachlan who died four years ago of cholangiocarcinoma. We went back to the spot where Lachlan’s family and a small group of friends scattered his ashes on the first anniversary of his death. I’ve been picturing Toren with us on this weekend. He would have been 8 months old, so I’ve been thinking about where in our bedroom we would have put the playpen and how he would have been crawling around grabbing at things. For mothers of stillborn babies, this seems to be part of “remembering”, a sad substitute for actual memories of a live baby outside of the womb. I haven’t done this kind of fantasizing for a few months now. I never assume one “stage” of the grief is completely gone when I move out of it. I just move in and out of various thoughts, feelings and experiences, whether anger, depression, shock, obsessive thoughts, calmness, agitation. Whatever comes my way. This is all part of the new normal. I don’t love it but I don’t fight it anymore like I did in the early days.

This morning when our daughter woke up, she started yelling, “Wake up, Daddy!” She’s been sleeping in our bed with us for this trip. I rolled over and started to say, “Shhh, don’t wake the baby.” I stopped. No baby. I guess I’ve been pretty successful at imagining him with us this weekend.  

It’s only happened two other times (so far) that I’ve “forgotten” he’s dead. The first time it happened was in the first few weeks. I was sorting through all the condolence cards trying to figure out what to do with them. At the time I was thinking I would put them in a scrapbook. I thought, “Yes, a scrapbook. Then when he’s older, I can show it to him and he can see how much people loved him.” I realized my mistake almost as soon as I finished the thought. I felt frightened. I thought I was going crazy.

The second time was in Hawaii about 3 months after he died. I was sitting on the beach watching a man play catch with his son. The father was standing in the water and the boy was on the shore. The father would throw the football and the boy would run into the water and dive to catch it. It looked like a lot of fun. I suddenly thought, “Oh, Pete will be able to do that with Toren when he gets that age.” That time I just felt incredibly sad. Hawaii is a warm, sunny, beautiful place to feel incredibly sad.

Moving forward through remembering. I know this is the healthy way to go. But it seems like first I have to stop forgetting.