Tuesday, September 08, 2015

Zombie Walk

Just saw photos from the annual Vancouver zombie walk in the news. I don't know what I was thinking. I should know better by now. There was a woman, dressed as a nurse, big fat smile on her face, holding a sign that said "Call the Midwife" (a tv show I never have and never will watch) and holding a doll of a bloody baby dangling upside down from an umbilical cord. I am feeling an intense rage that some people can find that funny, that my little boy's death, my tragic life-changing experience and the experiences of so many people I now know, can be someone else's good time. Thank goodness our family was nowhere near that event, that our daughter didn't have to see that, that we didn't have to see that. To me, these acts are not harmless fun. And it's actually less about protecting ourselves from these images than the link I can make between them and my son's stillbirth.

People have an extreme fear of death. I know this, and have felt it myself, though my son has experienced it before me and that gives me courage. People don't want to think about the inherent sadness of life, the permanence of death. Who can blame them? But then you miss out on the progression of these ideas - that death is a strange gift that no one wants, but that has the potential to enrich our lives in a meaningful way. Not the death of babies, no, that should never, ever happen. But the thing that makes our lives so incredibly special is the fact that it ends. People don't want to think about that because it's hard. I know how hard it can be. And there is a belief that we are only here on this planet to Be Happy! and Have Fun! And so there is a war on sadness, and the sacredness of life and death are turned into a big joke. Death is depicted in its most grotesque forms, but most people don't actually talk about it.  They steer clear of their friends who are dealing with the death of a loved one instead of trying to compassionately share the burden. They send their dying friends Get Well cards instead of having loving exchanges while they can. They avoid thinking about their parent who died when they were young. They stop thinking and talking about people they cared about who have died. That is truly a loss.

I often think that silence killed my son. A conspiracy of silence so entrenched that it didn't even occur to my highly educated and experienced doctor that my baby could die at 38 weeks of low-risk, uneventful pregnancy. People like the woman in that photo think they are laughing in the face of death, that they are being brave and that it makes them "stronger". After three years of learning to live with my baby's death, I truly believe that it is acknowledging the sadness, admitting the fear, getting familiar with that feeling of vulnerability (can't quite bring myself to say "embracing" it), that gives us true strength, that allows us to live meaningful lives, and feel deep gratitude and joy.

Right now, I am not joyful, nor grateful. I'm just angry. Once the anger subsides a bit, I will feel the searing pain, and the shock all over again, that he is not here with us. And the vulnerability. Anyone we love can be taken from us at any time. Where is the strength, the gratitude, the joy? Not here. Not yet. But before all that, there is hope. Despite everything, I have not lost a sense of hope. Sometimes it's very, very tiny, like now, so tiny that I don't actually feel it. But I do know it's there. Pretty amazing.



Sunday, May 10, 2015

When Mothers Day Means Remembering Loss

To whom it may concern:

As a bereaved mother of a stillborn baby boy, I was deeply hurt to read this description of him in one of your recent articles: "a child that never was". There is so much misunderstanding about stillbirth, the most harmful one being that people don't seem to understand that it is the death of a beloved child. If your story was about a 2 year old who had died, would the writer have called him or her "a child that never was"? When our grandparents or parents die, do we think of them, and refer to them, as people who never were? I can assure you, with immense pain and sorrow, that my son WAS. I was 37 weeks and 5 days pregnant when I delivered him. He weighed 6 lbs 10 0z and measured 19.9". And he was perfect. He died of an umbilical cord accident. And you cannot die without first living. To his family and those who care about us, he most definitely was, and continues to be, a real person in our lives. It feels ludicrous to even have to assert this. I hope in the future, you will take more care to not add to bereaved families' burden of grief.

Sincerely,
Andrea R.
(Toren's heartbroken mom)

Wednesday, May 06, 2015

Mother's Day 2015

Last Sunday was "International Bereaved Mother's Day". I understand it and I am baffled by it. I disagree with it and I support it. It raises awareness and it adds to the confusion. I think it's brilliant and it annoys the hell out of me. The usual babyloss contradictions and juxtapositions. The explanation for the creation of this day can be found here.

The thing is, I think a separate bereaved Mother's Day only works if your child died at any time after his or her birth. For bereaved parents of older children, I can see how it might create a loving space to acknowledge that loss. On that day, people are invited to meet bereaved parents where they're at. There is sadness but there can also be beauty in that. But there is so much confusion about stillbirth that I wonder if a separate day doesn't create almost too much space. Isolation. Avoidance. Exclusion. These things exist as well for people whose older children die. But with stillbirth there is a lack of validation - that "stillbirth" is a type of child death, just much earlier in the life of the child. When people hear about Bereaved Mother's Day, do they even think of women who have delivered stillborn babies?

When our son was stillborn, we already had a living child. People already viewed us as parents. But I have heard parents who lose their one and only baby say they don't feel like parents. Added to that, the world does not see them as parents and does not treat them as parents. Their grieving is not identified as parenting. They are not given flowers and support on days like Mother's Day, which would be a perfect opportunity to do that, I might add. They are told "Well, you didn't really have a baby." Seriously, people are told this. They are told it's "for the best". They are not given birth certificates. Their children's bodies are disposed of, rather than given a loving, respectful send off, like any other valued person who dies. A separate Mother's Day seems to encourage all these exclusions. Like bereaved mothers of stillborn babies don't belong in the "real" Mother's Day because they are not really mothers. If women whose babies die before birth weren't told, both subtly and overtly, that they are not mothers, I would probably be much more supportive of a special Bereaved Mother's Day. The problem is not with the creation of a separate day, it's with the stigma of stillbirth.

For me, Mother's Day requires mental and emotional gymnastics. I want to honour both my children, not to make some kind of point about it, but because it's just in me. It's a part of me. My son and daughter have both made me a mother. I wish they were both here to just enjoy the day like other kids get to do. Make cards for mama, help daddy buy some flowers (and chocolate, please), go for a nice brunch somewhere. Toren is missing all of this, and we are missing him. His sister does not get to simply enjoy a happy day. We must go to the cemetery, and she must come with us. People may disagree with this. They think we are making her sad. But Toren's death did not just happen to his parents. It happened to his whole family, including his sister. She feels it in her own way. We are together in this, in our grief and in our love.

I actually have a nice day planned this year. It involves being out in public as little as possible because I can't bear to have people mindlessly calling out "Happy Mother's Day!" to me. It can never be an only happy day for me, ever. I am lucky to have my daughter, and unlucky not to have my son. And so it is both happy and unhappy and it grates to have any part of it left out.

I know many people, far too many people, who are not looking forward to Mother's Day. It is a dreadful hole in their calendar and it is looming. I hope parents can feel close to all their children on that day. I feel awful about that because I know what terrible sadness that involves. And yet I wish it because I know it's better for people to be able to live their truth, whatever that truth may be.


Thursday, April 23, 2015

Absurd

Absurd 
adjective 
wildly unreasonable, illogical or inappropriate; 
conceived or made without regard for reason or reality.

Examples:

Holding a support group for bereaved parents of babies on a maternity ward.

People thinking that remembering and talking about your baby, or just saying your baby's name, will upset you when it's the opposite that's true.

Someone asking you if you want to hold their living baby after your baby dies because they honest to goodness think it will help you.

People thinking that healthy newborn babies who die just before they are born were "not meant to be".

Care providers and funeral directors thinking that a baby, and a baby's body, somehow belongs to them, rather than to the parents.

People claiming to be "at peace" with the death of a baby. Easy to do when it's not your baby.

People sending you their happy crappy Christmas cards without even a small note indicating that they recognize and acknowledge that this is maybe a particularly tough time of year for you.

A deceased newborn baby being stripped of her clothes in the hospital and being sent to the funeral home naked. Would this happen to an older child? Or an adult??

At first, thinking it was ok to not name him, or to "save" his name for the next baby.

Friends and family not claiming Toren as a person in their lives after he died, even though they all claimed him the moment they found out I was pregnant.

A sweet and precious newborn baby being referred to as "it".

Someone going out of her way to come up to you at a community awareness walk and making an ignorant comment about your tshirt with your baby's photo on it, and it doesn't even occur to that person to offer condolences.

Parents who have nurtured a growing baby and delivered their child, both labouring and witnessing, and then doubting that they are parents.

A newborn baby's body not being treated with care and reverence by hospital staff.

The phrase "born sleeping".

Healthcare professionals thinking that we really didn't want to see or hold Toren, rather than understanding that what we actually didn't want was for him to have died.

Media articles needing to explain the impact of stillbirth on families in great detail, something they don't need to do when they are reporting on the deaths of older children.

Parents not receiving a birth certificate for their babies who were born.

Having to use the word "dead" when I am talking about one of my children.



Monday, April 20, 2015

Why We Run


It was a beautiful sunny day as Peter & I set out with our daughter for this year's Mini Sun Run. It's the smaller kids run that accompanies Canada's largest 10K road race. This is our 3rd year participating. It's quite a festive event, and perfect for families. Our daughter enjoys it. Every year as the SLC team prepares for the bigger event, she asks if we can do the Mini Sun Run. She knows it's for her baby brother.

This is not an easy thing for me to do. Other parents are pushing strollers, carrying younger siblings in carriers. I have a picture of my baby attached to my backpack. It feels awful but I do it anyway.

We run not just for our own baby, nor all the babies who have died. We run also for all the babies who will die. Tonight, tomorrow, in the days, weeks, months, years ahead. Families will be facing some of the same struggles our family has faced for the last 3 years. Bereavement support is important, but even more important is prevention. Awareness and prevention go hand in hand.

The other day our daughter made a little friend at the playground. The friend asked if she has any little brothers or sisters. The conversation went something like this:

Daughter: "I do have a brother but he died."
Friend: "He died?"
Daughter: "Yes."
Friend: "But where is he?"
Daughter: "He died."
Friend: "Ohhh...do you want to go on the swings?"

So sweet. I picture the little friend telling her parents and the parents being angry that we are talking about death at the playground (or at all). Except to us it's not "death", it's just our family. I worry that someone will say to our daughter: "Well, you don't really have a brother." Or: "My mom says you shouldn't be talking about that." Just as I worry that someone at the Mini Sun Run will tell me that my photo of my baby is inappropriate, unwanted, too sad. That my broken family is not welcome at an event for whole, happy families.

No one at a festive event wants to hear about babies dying. They don't want their good time ruined. Similarly, no one wants to hear about stillbirth when they're pregnant. Exactly when they need to be hearing about it. It feels awful, I don't want to do it, nobody wants me to do it. I do it anyway.

Monday, April 13, 2015

Experts

Recently I read this recommendation in an article about stillbirth research:

"The onus for fetal death registration and burial arrangements should default to the healthcare provider/institution"

Default. Really. Is this "service" to be offered to parents of older children who die? What about babies born alive who subsequently die? Will parents of adult children who die be offered this default service as well? What other parenting responsibilities should "default" to people unconnected to our family? No one offered to call Pete's parents to tell them the awful news. No one went to our apartment and told my mother, who was excitedly awaiting news of her first grandson's birth. No one from the hospital screamed and cried with her, and hugged her and tried to console her. Which staff member will be assigned to light his candle every birthday? Will they plan and book our annual birthday/grief trip for us in January? Who will decorate his tree? What about the countless other things I do because he is my son and I love him?

*We* are Toren's family. Whatever else has been taken, that never can be. How dare anyone even try. It took me a year to feel able to organize his memorial service but I'm so glad we did it the way we did and I cherish my memories of that day. I cannot imagine coming out of the fog of that early grief and realizing that faceless strangers had arranged his final experience in this life in some business-like and perfunctory way.

This idea that parents shouldn't plan their child's funeral and make arrangements for their child's body is yet another frustrating example of typically misguided attempts to "help" me with my grief. Frankly, these are not the things I need help with. What I needed help with at the time was being gently guided past the fear to see and and hold my baby, get family photos and spend time with him before saying goodbye. None of this happened, to my eternal regret. I'm left with the fear, two photos, and no memories. I also continue to need help with understanding grief, surrounding myself with supportive others, raising a bereaved sibling, and managing anxieties that have surfaced since his birth.

My own experiences, and those of all the bereaved parents I have met or heard from or read their blogs, lead me realize that the world has all kinds of ideas of what "stillbirth" is but few stop to hear the actual experiences of bereaved parents. It is particularly harmful when those who have an opportunity to use their powers for good, instead use their positions to perpetuate ignorance and fear, and promote uninformed viewpoints. It's even worse when it is inserted into legitimate research yet is not based in proper investigation and evidence.

When patients deliver their stillborn baby, of course they are distraught - that is a normal reaction. I defy anyone not to be grief-stricken in that situation. Rather than trying to stifle or prevent that normal reaction, what's needed is training in supporting patients in shock. No doubt that has got to be one of the toughest jobs out there. Could I do it? Who knows. But I didn't sign up for it. People who go into maternity care are also going into bereavement care, whether they realize it or not, whether they like it or not. The time spent with their baby after his or her birth is part of parents' "healing" and sets them on their path of grief and parenting. It has to be as right as possible.

I can't help thinking how backwards this all is. I wish the "healthcare provider/institution" had put this kind of energy into preventing my baby's death in the first place. That's what I really needed help with.

When it comes to stillbirth, if you don't talk to bereaved parents you're not getting the whole story. It's lazy at best, at worst, harmful. Anyone working in this field can learn a lot from talking to those who truly know what it's like when your baby dies at birth. It's not going to be a comfortable conversation for anyone, but it's a necessary one.



Wednesday, March 18, 2015

New Question

Yesterday a new question popped into my head:

Did he starve to death, or was he asphyxiated?

I could go through the autopsy report again, I could put myself through the trauma of calling my doctor and forcing him to talk to me about it, I could do tons of reading around umbilical cord accidents, seek out other parents to connect with, read blogs, get as close to an answer as I can, do all the usual things to fill in the horrific blanks.

But in the end, he will still be dead. Forever.

Sunday, March 15, 2015

Withnail & I and Me

When I was in my 20s, I read Richard E. Grant's film diaries entitled With Nails. Withnail & I is one of my favourite movies and I find Mr. Grant an interesting actor. I remember enjoying the diaries but also being shocked to read about his baby dying after his wife went into early labour.  Last week, I saw Mr. Grant on a tv show and remembered about his diaries and his baby. The only thing I could really remember was him carrying a small white coffin to a graveyard. At the time I couldn't even imagine what that experience must have been like. I had no frame of reference for it. And it never occurred to me that I ever could.

Recently I took With Nails out of the library because I wanted to re-read the section about his baby. What I read was moving, shocking, and full of the now familiar litany of babyloss bullshit. It is unbelievable to me what that poor man went through after his wife delivered their little girl in 1986. This is some of what he wrote about his baby's birth:
"She is handed to my stricken wife first, and had I all the powers of Mars and miracles I would give this child life...She is warm but dead. And PERFECT. Ten toes, ten fingers. Eyes, mouth, all. Broken. No breath.
Our hearts are broken and will we ever cease weeping."
This is what he wrote about returning to rehearsals for Withnail & I, for which he had just been cast:
"Because a premature birth is perceived as a miscarriage, people find it hard to credit such a death with as much gravitas as they would a full-term child and I was bleached by the 'Never mind, you're sure to have better luck next time round ... Nature's way ... for the best ...' palliatives."
Seems like not much has changed in the time since their baby was born and our baby was born. Toren was a perfect full-term baby, older and bigger than any preemie, and yet we have also been "bleached" by platitudes in the last 3 years. It continues to this day. I've spoken to many parents and it doesn't seem to matter if your baby was 23 weeks or 38 weeks, if she lived for a few minutes or a few weeks, if he took one breath or none - your grief will be dismissed. People don't want to believe it's as bad as it is. That you didn't just "lose a pregnancy". They don't want to know that your baby is your child, and that your child died.

I sometimes think the word stillbirth misleads people. As if stillbirth is some unavoidable one-off experience that sometimes happens and is "meant to be", rather than a word that actually means the sudden and tragic death of a child. The other day someone referred to me as a "parent of stillbirth". I'm sorry but you can only be the parent of a child. To me, "stillbirth" is a topic, a field of study, a catch-all word to encompass all the different reasons babies die at birth, many of them preventable. It simply means "born dead". But the term "stillbirth" does not include the why, for example, umbilical cord accident, nor the who - my beloved son. A baby born without signs of life is first and foremost a baby.

Toren was not "a stillbirth", nor "a stillborn". He was a baby. He should be a 3 year old. He is both my 3 year old, and my baby. I hate that. He should only be a 3 year old, not a "forever baby". There shouldn't be any such thing.

Last week we had a house full of kids, our daughter's friends and their little siblings, over for a playdate. I just couldn't believe Toren was not there, playing with his friends. I will never stop being shocked by this. During these very difficult moments, I think about all the families who are missing their babies. I know I am not alone. It helps, and it doesn't.



Saturday, January 10, 2015

Third Birthday Photos

View from our townhouse in Ucluelet. First day was wet and rainy.

Next day was beautiful and sunny, with a big blue sky.

Birthday cake. I didn't bring supplies so we bought a box of cake mix and made icing from melted chocolate. Not the world's most amazing cake but totally fine for the circumstances. However next year I will be more prepared!

Cool thistle. Never thought I'd write those words.

There was some truly kooky seaweed on Big Beach in Ucluelet.

And some beautiful seaweed too.

We scattered dried flower petals in the ocean on his birthday.
These are petals from some of the flowers we have bought for him over the last 3 years.
Scattering flower petals

Nature's beauty was all around us.
Nature's relentless fierceness too - we felt the 4.6 magnitude earthquake that happened while we were there.

Locks along the Wild Pacific Trail.
There was a bench at this spot dedicated to a little boy who died just after his 2nd birthday.
Wild beastie running through the woods

I could have watched these crashing waves forever.

Building sand castles
Busy yet peaceful

Light streaming through

Fantastic care package waiting for us when we got back. Thank you Michelle & Jonathan! xo