Saturday, December 27, 2014

Weirdmas

There is a particular weirdness that goes along with having a newborn baby boy die at birth around Christmastime. No time of year is better or worse for having your baby die. It's just all bad. But at this time of year, it starts to get to me, all the messaging, mostly through music, about a newborn baby boy. The most overproduced baby's birthday party in history is such a jarring contrast to our poor forgotten baby's approaching birthday. Some of the songs could almost be love songs between a bereaved parent and a child, but invariably joy is mentioned and the effect is lost. As usual we will go away somewhere peaceful for his birthday in early January, to be together as a family, alone with our grief and our love.

One of the many ways we cope with heightened grief at this time of year is to wait until Christmas eve to put up our tree. We used to put it up weeks before like normal people but after Toren died, it was difficult to throw ourselves into the festive spirit. We miss him every day, not just during special occasions but there are times when it's a bit more harsh, when I need to seek refuge from the tyranny of contrast. This year the decorations around town went up really early. We need our home to be a sanctuary as much as possible. Our daughter is young enough that she doesn't remember any different. She accepts that our tree goes up Christmas eve. Then it comes down new year's day. That's enough. I was dreading seeing his special ornaments again but it was ok. I didn't handle them though, just watched as they were put on the tree by his big sister and his Daddy.

I'm reminded how different this time of year is now, not just from what we did before, but from other people. We decorate a special tree, buy yellow flowers, visit the baby area of the cemetery, keep a candle lit, and find ways to channel this grief, such as donating to those in need. I can never say "turn a negative into a positive" because it's just a trite phrase that is worse than meaningless to me. I say worse because I find it offensive. There can never be anything positive about my son dying. I'm not going to sugarcoat it for anyone. A big difference at this time of year is that of course I'm not organizing a birthday party and inviting little friends, not making a cake, not finding out what the little boys of friends liked as birthday presents. Our home is not chaotic with that kind of activity. Sometimes I feel like I'm standing in a deep dark hole and when I look up, I can see parts of that other life from here.

One of the things I won't be doing again next year is watching the movie Love Actually. Shockingly, one of the characters makes a "dead baby" joke. There is a blog post languishing in my Drafts folder about how you cannot ever use those words together, dead and baby, unless you have one. In this case they were making a "joke", but in no situation is it appropriate unless spoken by the bereaved parent of a dead baby. There are some words and expressions that belong only to a specific community. Next year (and forever) I will also skip The Santa Clause 3 as it involves Mrs Claus being in labour - the laugh-a-minute, pregnant-women-are-SO-hilarious Hollywood version of labour of course. Really, the only Christmas movies I need are How The Grinch Stole Christmas and A Christmas Carol ("Scrooge", 1951 with Alastair Sim). And also my favourite Christmas carol, Fairytale of New York by the Pogues.

We attended a memorial service a few weeks ago which is put on every year free of charge by a local funeral home. It's nice to have something for families in grief at this time of year. We listened to some music and readings, and then walked out into some gardens to place an ornament containing memory seeds onto one of the trees. In the spring they will be planted and we'll be able to pay them a visit. We bumped into some friends there which was both lovely and horrible. I wish none of us had to be there. After the service they served hot chocolate and cookies. It was really a nice event, and yet I can't help thinking that there is such a huge difference between a memorial service put on for the bereaved by an organization, and one put on by bereaved parents themselves (which I have also attended). Some of it just didn't work for me as the mother of a baby who died at birth. But this is very often my context now. I mentally finish many, many sentences (mine and other people's) with "...unless your child died at birth."

Anyway, Christmas is over now. Just need to face a new year, and his 3rd birthday, without him.

Tree ornament on Granville Island

Tuesday, December 02, 2014

Christmas List 2014

Daughter

Books
New dress
Lego
Music CD
Pyjamas
Musical jewelry box

Son

Attend funeral home memorial service
Donation to children's charity
Movie night with support group friends
Decorate his tree
Visit cemetery Christmas eve
Light candle Christmas day

Thursday, July 17, 2014

Break, Break, Break

Break, break, break,
         On thy cold gray stones, O Sea!
And I would that my tongue could utter
         The thoughts that arise in me.


O, well for the fisherman's boy,
         That he shouts with his sister at play!
O, well for the sailor lad,
         That he sings in his boat on the bay!


And the stately ships go on
         To their haven under the hill;
But O for the touch of a vanish'd hand,
         And the sound of a voice that is still!


Break, break, break
         At the foot of thy crags, O Sea!
But the tender grace of a day that is dead
         Will never come back to me.  ~ Alfred, Lord Tennyson


Wednesday, July 09, 2014

Check


Yesterday my daughter drew a picture of a happy face and a sad face with a check box beside each one, and instructed me to check the one I was feeling at that moment. I was feeling pretty good, the weather was nice, it was a good day. I was conscious of all the things I'm grateful for, so ignoring the sad undercurrent that's always present because Toren is missing out on all of this, I checked the happy face. She continued drawing and doing her other 5 year old little things while I watched. A while later she slid the drawing back towards me and said, "You can check both if you want." No other explanations or instructions, just that. She stood there patiently looking at me, not judging me, just waiting for my decision. I picked up the pen and checked off the sad face too.

Later that night, she drew a second picture. It was again one happy face and one sad face. Then she drew several check boxes around each one, "in case other people want to join in too." Peter was calling her to brush her teeth before bed, and before running off, she quickly drew a heart between them.


Tuesday, July 01, 2014

Longing & Belonging


I've been enjoying doing some crafting. It's not something I've ever done much of in my life. Probably as a kid in school. I don't remember. My mom is talented at sewing and used to make some of our clothes. I'm supposed to be doing these crafts with my daughter but she's happiest dancing and singing around me while I do the actual work. Sometimes she will be inspired to contribute some art to the proceedings. She named these two owls "Hoot" and "Duffy". They have been my favourite project so far.


There's been a niggling thought at the back of my mind as I do these crafts. I always feel a moment of small pride when I finish a project and then almost right away: I shouldn't have time to do this stuff. I should be running around chasing a two-year old. I shouldn't be able to leave buttons and needles lying around. From what I can tell, this is normal for bereaved parents. It's not that I feel entitled to anything more than anyone else. You just live in two timelines - the present one, and the one that would have been. It feels like a natural consequence of the - usually - reasonable expectation that your children outlive you. So even though I enjoy making things and working with my hands, I also feel a little bit stupid doing them. I assume this feeling will pass in time, as I become more skilled (on a few different fronts).

On the whole, crafting has been good. It's yet another outlet for the grief. Every owl, every bird of paradise, every ghost (ghost?? I will probably stop making those) is made with pure love. Also rage, sadness, fear, anxiety and shock. It all gets stuffed in there with the batting. Not stuffed down and away, just...integrated.

One good thing about learning the nuances of daisy stitch vs running stitch is that it's a relaxing way to spend time on my own. It's almost meditative to pass the needle through one side of the fabric and out the other, repeating a pattern of stitches over and over until suddenly a form emerges. Since the miscarriage I've been feeling more isolated. It's surprising how many social groups you can get kicked out of when bad things happen to you. I realize it's a two-way street. I feel like I understand every single person's position when it comes to relating to me. But it still hurts like hell to feel like I don't belong anywhere. I'm not very gracefully learning how to navigate the latest bumps in the road. Or as someone once said - the bumps are the road.

Right now, the best place for me is to be immersed in the textures, colours  and comfort of a harmless pile of felt.






Tuesday, June 24, 2014

Saturday, June 21, 2014

One Of Those Crying & Smiling Moments


Today was a day of organizing. I've been wanting to arrange photos, group things, tidy up. I removed the clipping of Toren's hair from a photo frame to replace it with a picture of me pregnant with him. I've been wanting to do this for a while. It's still not quite right, the whole photos/mementoes situation, but it's something. I've put the hair clipping in his memory box for now, in a ziplock bag to protect it.

I can't believe how much hair he had. It was long! Just like his big sister. She was born with a full head of hair. This makes me so happy. And so sad.


Friday, June 20, 2014

Damage Control

There's a comedy show I made the mistake of watching one day. One of the skits went like this: two hipsters working in some kind of shop were chatting and one of them was stirring a drink. The liquid in the glass was sort of murky and strange looking so the other character asked what it was and was told it was homemade tea. The sneering response?

"It looks like a stillbirth."

I have learned in subtle and not-so-subtle ways that people don't really know what a stillborn baby is. When I used to say Toren was stillborn, some people would say, "What does that mean?" I will admit to some confusion myself in the beginning and I'm the one who delivered him, an almost 7 lb baby. Now, two and a half years on, I know that we all die, some people die young, sometimes those people are babies, and sometimes those babies die before they can be born.

This is more than just a problem for me. Yes it hurts me when people compare my baby to a horrible brown liquid. But more importantly, I have also learned that the stillbirth rate has not changed in decades. When people started advocating for something to be done about SIDS, research was done, the "Back To Sleep" campaign was started and the SIDS rate decreased dramatically. When people became aware that newborn babies were suddenly dying in their cribs for no apparent reason, it was rightly deemed unacceptable. It still happens, more work needs to be done, but they are getting somewhere.

Stillbirth is 10 times more common than SIDS. Babies are still dying suddenly, for no apparent reason. And the world seems...fine with this. Indeed, they can make jokes about it without a thought for the damage they are doing. If stillborn babies are not babies but rather, a disgusting mysterious liquid, why should anyone do anything about that? Who wants to prevent that? Why should anyone offer compassionate condolences for that?

What if on that stupid show, after the homemade tea line, the response had been, "It looks like a baby who died of SIDS."? Or what about this one - what if they had used more specific language about stillbirth, like in our family's case: "It looks like a baby who died of an umbilical cord accident just before his terrified mother laboured and delivered him at 37 weeks 5 days while his silently grief-stricken daddy stood watch over them both."? Maybe they could have hit 11 on the laugh-o-meter with that one.

Less offensively, there's just the straight up ignorance about stillbirth. People will say things like a woman "gave birth to a stillbirth" or "she had a stillborn". Actually, you can only give birth to a BABY. Ignorance leads to language problems and language problems perpetuate ignorance. I feel like every time a stillborn baby is not characterized as a baby first and foremost, it's another roadblock on the path to prevention. I don't want my daughter, in 20 years time, to have the same chance of having a stillborn baby that I did. I want people to understand that Canadians are dying suddenly and unexpectedly, and something needs to be done about it so it stops happening. I want them to find it as unacceptable as I do.

I never say Toren was stillborn anymore. I simply let people know we have a son but that he died. That way, I don't have to deny that he lived. I can still claim my family but avoid getting hurt by ignorance and misunderstanding. Sometimes damage control starts with your own heart.



Saturday, June 07, 2014

Darkness Between the Oceans

I read a book recently called Light Between the Oceans. The "light" referred to is a lighthouse. I am so enraged about this book I can almost not type straight. It portrays bereaved mothers as deranged lunatics who don't know right from wrong. In the story, a woman delivers a stillborn baby on her kitchen floor, on a remote island where she lives with only her husband who is a lighthouse keeper. Before they have a chance to tell anyone, a living baby washes up on shore in a boat. The couple don't know anything about who this baby is or what happened to her, but they decide to keep her, even though they know she might have parents somewhere frantically searching for her. In time they learn that she does indeed have a mother whose life has been destroyed by the loss of her daughter. The crime is eventually revealed and the mother is reunited with her now 4 year old daughter who is completely distressed at being separated from the only parents she has ever known.

I won't get into how I stayed up til 3am reading this book, and not because it's a "page-turner".

So many things upset me about this book. First of all, I have now met many bereaved mothers of stillborn babies and I honestly cannot imagine any of them stealing someone else's baby. All they want is their own baby, the one who died. No matter how many living children a bereaved mother has, no matter how many babies she may have after losing one, she will always long for the one who died. And yet I know that the wider community thinks it's the opposite - that any ol' baby will do. That babies are replaceable. "You'll have another one" is a common and hurtful refrain. It disgusts me that this book plays into people's ignorant fears about bereaved mothers and reinforces their secret thoughts that when we see a baby, we just want it for our own. There are no other children I want than my own, even though one of them is dead. When I see a baby, he or she is just their own sweet, individual self, just like my babies are. That doesn't mean I don't sometimes envy other people's good fortune and question why my baby died and theirs didn't. That is a normal reaction for someone in my situation and it comes and goes like the tide. But I have never, ever wanted anyone else's baby. It hasn't even occurred to me. I can't believe I even have to say that. This might sound strange to most people, but I would never trade places with anyone because it would mean erasing my children's lives. It would mean not being their mama. Unthinkable.

Another problem I have with the story is that bereaved parents are so often the most caring, compassionate people you will meet. Yes they have anger and grief, but their eyes also become more open to the world's suffering. Quite often they are moved to do something about it. They are the people raising the money and doing the work to help other bereaved families, and they do this in honour of their children. It is both an outlet for grief and a form of parenting. The idea that a bereaved mother could be content causing pain to another mother by taking her child...I don't even know what to say about that. I find it both sad and revolting. Of course we have all seen stories in the news about mentally ill women abducting babies. And it is well-known among mental health professionals who actually know something about stillbirth (rare creatures) that grief is often mistakenly associated with mental illness, to the point where many doctors think that medications are a "cure" for grief. It's actually a huge problem. That's where stories like this lighthouse book come from. At best, it's not very imaginative, and at worst, it perpetuates a harmful stereotype. It's incredibly discouraging.

One of the worst parts of the book is how the mother of the stillborn baby is never reunited with him in her heart. The baby is born, they bury him, and he is forgotten. I know this happens in real life. It is tragedy upon tragedy. It happened a lot in the past, when women were actively encouraged to forget their babies, and is perhaps happening less so now. I thought that at some point, when the lighthouse keeper's wife has to return the child to her biological mother, she would begin to grieve her stillborn son. In that way, she would be reunited with him and be living a more authentic life, however painful that is. She would grow and learn from her loss, something I continue to wish for for myself. Despite all the insults that came before in the story, that would be one redeeming factor. But no. To the author, a stillborn baby is merely a plot device, not a person who is greatly loved. For a beautifully-written story of stillbirth, and remaining connected through love, I highly recommend Shadow Child by Beth Powning, an author who, sadly, can write from a place of experience and insight.

I know that fiction is meant to be an "escape". But when your desire for escape causes damage to my family and my friends, a vulnerable community of grieving people, don't expect me to shut up about it. It's so easy to think that bereaved mothers are just "crazy". It's lazy thinking. Much easier to just shrug your shoulders and say "Oh well" than to actually sit with the bereaved, listen to their grief, and maybe connect with some of your own difficult feelings. Who wants to do that?? Exactly no one. But if you do, you will be doing a good thing, a very good thing, for them and for yourself. For one thing, you will find out you can live with these feelings and be ok in whatever place that takes you. I can't stress enough what an important life lesson that is.

Yesterday a dear friend told me that her cousin had a stillborn baby girl in the last few days. It is a huge shock, and no words can describe my feelings for this family, knowing what they are going through. Their lives are in ruins, and now they must rebuild. It's so hard to make sense of where all the pieces of your life went when your baby dies, never mind being able to figure out how to reassemble them into their "new normal". It is heartbreaking work and I'm guessing it never ends. This is life work. The last thing this family needs, any of us needs, is to have harmfully fictionalized accounts of stillbirth grief out there. I'm disgusted that people are using my family's tragedy to sell books and are causing so many people harm in the process. And now they're apparently making it into a movie. Great.

A lighthouse is a beacon. Its role is to help navigate treacherous waters. There are beacons of hope out there for bereaved families. All you have to do is peer into the darkness.



Tuesday, June 03, 2014

1000 Oceans



these tears i've cried 
i've cried 1000 oceans 
and if it seems i'm floating 
in the darkness 
well i can't believe that i would kep 
keep you from flying 
and i would cry 1000 more if that's 
what it takes to sail you home 
sail you home sail you home 

i'm aware what the rules are 
but you know that i will run 
you know that i will follow you 
over silbury hill through the solar field 
you know that i wil follow you 

and if i find you will you still remember 
playing at trains 
or does this little blue ball 
just fade away 
over silbury hill through the solar field 
you know that i will follow you 
i'm aware what the rules are 
but you know that i will run 
you know that i will follow you 

these tears i've cried 
i've cried 1000 oceans 
and if i'm floating 
in the darkness 
well i can't believe that i would kep 
keep you from flying 
and i will cry 1000 more if that's 
what it takes to sail you home 
sail you home sail you home

~ Tori Amos

Tuesday, May 27, 2014

The Messenger


Got a letter from a messenger
I read it when it came
It said that you were wounded,
you were bound and chained

You had loved and you were handled
You were poisoned, you were pained
oh no, oh no -
you were naked, you were shamed

You could almost touch heaven
right there in front of you
liberty just slipped away on us
now there's so much work to do

Oh the door that closes tightly
is the door that can swing wide
oh no, oh no -
Not expecting to collide

For a minute I let my guard down
not afraid to be found out
Completely forgotten
what our fears were all about

oh no, oh no -
There's no need to be without

There's a chance and I will take it
this desire I can't kill
Take my heart, please don't break it
I will crawl to your foothill

I'm frightened but I'm coming,
please baby, please lay still
oh no, oh no -
Not coming for the kill
oh no, oh no -
Not coming for the kill
oh no, oh no -
Not coming for the kill

~Daniel Lanois

Friday, May 23, 2014

Breath of Life



"Tunuri then heard a singing voice, "Hello, Tunuri! I am Brother Wind. Because the Sun is my father too, you and I are brothers. In fact, I am the eldest brother of all beings, and I give the breath of life to all children. When I blow strongly, I move the sky, and when I blow gently, you can hear me whispering. I am here, Tunuri, whenever you need me. Just take a deep breath, and I am with you."

Wednesday, May 14, 2014

Confirmed

My doctor called this afternoon and said that my HCG levels have fallen in 2 days which confirms that this is in fact a miscarriage. Fortunately no medical intervention is required and my body should settle down in the next few days. We are very grateful for all the support we've received throughout the last week (and the last two years). I look forward to regaining my health and my strength in the coming weeks. 

Tuesday, May 13, 2014

Busy Hands, Quiet Heart

Not long ago I took up knitting. I'd like to one day make blankets for stillborn babies. It's a vague plan and I'm mostly just content to learn to knit. In his photos, Toren is wrapped in very ugly blankets. They're clearly hospital blankets. They're green and yellow. Not even blue. I have heard of stillborn babies being reduced to genderlessness by hospital staff. Someone did it to Toren in the weeks following his birth. "It". Not "he". It hurt me deeply on his behalf. Probably Toren's blankets were just what was available at the time and in the grand scheme of things, it's not a big deal. But he deserved soft, hand-knitted blankets - blue ones - as much as any other newborn baby. Maybe more so. That was his one opportunity to be pampered and be treated like the treasured newborn baby boy that he was.

I've been stuck at home since Friday (except for a drive on Sunday) and during that time I've been doing lots of knitting. I started a pink blanket with some very finicky yarn indeed. I don't pay close attention when I knit and the yarn kept getting into knots and the result was a hand-crafted disaster. I kept referring to it as the World's Worst Blanket. After one and a half balls of this nonsense, I decided to undo it and start over. It's the right thing to do and it feels good to finally be doing it.

After writing what I wrote yesterday, I got tearful and felt pretty fragile for the rest of the day. As the lab technician took my vial of blood, I thought - the answer is in there. But actually it's in tomorrow's blood sample too. They need to compare them. My doctor should have the results by Thursday. After what my body has been through in the last couple of days, I have almost no hope left of a happy outcome for this pregnancy. I am grateful that overall, it has not been too painful. I have had some uncomfortable moments but I seem to be managing fine with hot packs and Tylenol. There has also been some fear, but with support from friends, I'm getting through it.

We've been trying since our daughter was about a year old to give her a sibling. She'll be 6 this summer. For the last year and a half, we've been trying to give her a living sibling. We do have fertility issues but those have been addressed relatively easily compared to what many people have to go through. I take a pill, it regulates my cycle, we conceive naturally. After Toren was born, we couldn't even talk about it for a year. Trying to conceive - or "ttc" on the online support forums. I was just too afraid. And then hope, and a chance at love and joy, made us decide to keep trying. Just recently I had been thinking, maybe that ship has sailed and we need to start accepting our family as it is. And then it happened. And now this is happening.

There is a great push for the replacement child when you have a stillborn baby. It's an awful idea - that anybody can be replaced - but that is the messaging out there. The so-called "rainbow baby". A rainbow after the storm. I have felt like everyone is secretly just waiting for me to have another baby. Then they can focus on a new baby and forget about the one who died. People who take no part in our grief think they are entitled to ask if we're going to have another baby. The world does not understand about the Toren-shaped hole in our hearts that can never be filled. If we were lucky enough to be able to have another baby, that child would rightly belong here as much as anyone else. He or she would just be their own little wonderful person. Joy alongside the joy of our daughter, joy alongside the sadness of losing our son.

This morning I woke up early and knitted for 4 hours straight (!) while Pete and our daughter slept in. I liked keeping my hands busy. I've also taken up small sewing projects. One day at the library we found a book entitled Sewing For Kids and we've been making our way through some of the projects. I do look forward to getting out again, especially now that the weather is getting warmer. But for now, I am resting. Resting my body, resting my heart. But not resting my hands.





Monday, May 12, 2014

Update

I was very nervous calling my doctor's office this morning but I needn't have been. The receptionist was so kind and compassionate. I was not worried about her in particular, just the healthcare system in general. Doctor is not in today so after some discussion I've been sent for bloodwork to check my HCG levels. I'm waiting here now, and will return Wednesday morning to see if they've gone up or down. She had offered to get me an ultrasound but I might not be far enough along to detect a heartbeat. This seems like the most sensible option, and the most gentle emotionally. Friday and Saturday were horrible days but today I am calmer and feeling stronger mentally ( - physically things seem to be continuing steadily). I don't want to do anything that will mess with my serenity, as my friend Jess would say. 


Saturday, May 10, 2014

More Tears

I haven't blogged much lately because so many thing are happening so fast. A few weeks ago I decided to do a pregnancy test (this is where all my unwritten blog posts about infertility should be linked) and to my complete surprise, it was positive. My first thought was - a faulty test! So I did two more. In the days following I would wake up and do tests until I thought ok, enough. Appointments were booked. Tentative, small plans were made. Not for bringing a baby home, but for a potential pregnancy. I found myself able to participate more in the community. The library, ballet class were not as torturous as usual. I attended a child's birthday party. I sat with friends and acquaintances at a busy café and didn't feel like running out of there. I thought, maybe, maybe I can re-enter this world that I was kicked out of when Toren died. It was like a strange magic that I tried not to judge too much, just experience. Friends got excited, bereaved friends cautiously so. If I was not exactly hopeful, I was definitely hoping. Things can change so fast.

And then they change again.

Yesterday morning the bleeding started. I felt panicky and distraught. Friends shared with me their stories of bleeding throughout their successful pregnancies and that this does not necessarily mean it's over. I never had any bleeding during any of my three previous pregnancies, not even for my miscarriage, so this is all new territory for me. As the day wore on, things continued steadily but I clung on to hope. Today, there is no change except for now there is some very mild cramping. I will call my doctor on Monday. A friend (with unfortunately lots of experience with miscarriages) suggested I go to the ER so they can confirm whether this is in fact a miscarriage. I decided against it because it would just be too harsh for me. This is a gentler, more peaceful way to go, whatever the outcome.

Obviously I am upset. Peter is upset though he hides it better than I do. We are still in wait and see mode but it's not looking good. We did tell our daughter the good news when we first found out. I was only about 5 weeks along but after much discussion, we decided that she should know what is going on with our family. She should feel the joy and excitement of good news, and share in the sadness when it's not so good. When something sad happens in our family, she is supposed to feel sad about it. She is entitled to her sadness just as we are entitled to ours. I don't know if she fully understands what is happening now but we've tried to explain. She has seen me cry and is trying to comfort me and I think this might be distracting her from her own feelings about it. She does sense things before we explain them, and it's better for her to hear it from us than from other people, or make up her own ego-centric story about it. Little kids take credit for things, and they also take blame.

Tomorrow is Mothers Day. I had already decided weeks ago that we would skip it this year. She is not in school and therefore is not having it forced on her. I am incredibly lucky that I get to celebrate being her mother every single day that we are both alive. Being Toren's mother has been such a struggle for me, the most difficult thing I've ever endured. I need to honour that on my own terms, in my own way. Although Mothers Day was started with good intentions, it has become more of a forced happiness occasion where no space is made for bereaved mothers, those grieving their mothers, those who did not get the nurturing, loving mother they deserve and those who have been unable to conceive a much-wanted child. I'm probably leaving people out of that list but generally, people for whom "motherhood" is not something easily celebrated at a brunch.

The last week or two have been tragic for two families that we know. I think about them constantly. I can't imagine facing what they are facing. Tears for us, tears for them. Sometimes I feel like I will drift away on a sea of tears.

I didn't leave the apartment yesterday and I probably won't today. Tomorrow, if I'm physically able, we will take a drive somewhere, and spend some time in nature.


Monday, May 05, 2014

Dinner Out With Friends

Our daughter was colouring and doing the activities on her placement, then decided to flip it over and do her own drawing.


Tuesday, April 22, 2014

Insomnia


I've been awake for hours. There's so much stuff swirling around in my brain. Things I can't blog about. Complicated things. Things I don't have words for. Things I'm angry about. Things I don't want to offend people about. And so they just swirl around and around in my head with no outlet. I seem like the oversharer from hell and yet there is actually more I don't share, I don't say, I don't even want to think about. It's very isolating.

This weekend we got in the car and drove far away to a remote lake. It was a long journey, too much time in the car, but when we got there, I just wanted to stay forever. It was so peaceful. The lake was still frozen. Geese were walking along the surface of it. You don't see that too often, geese walking on top of a lake. It's kind of funny.

I wish I was just up with a sleepless two year old. But he is in the eternal sleep, never to be awoken. I'm so tired from it but I can't sleep.

People say "Life is short", but to me some days, it feels so painfully long.

Saturday, April 05, 2014

Busy Train


Our local community centre has a wonderful old train on display. We took our daughter this morning for a little visit. There was so much going on to keep us all busy. 

Thursday, April 03, 2014

Friday, March 28, 2014

Morning Game

Sometimes in the night, our daughter comes into our bed. This morning when she woke up, she wanted to play a game. She usually comes up with some kind of game first thing. She threw the covers over her head and said, "Pretend you were waiting for your egg to hatch, but before the baby could be born, hunters came!" I threw my arm over her and said, "Be gone hunters!" And I roared. Then peep, peep, peep, a little creature emerged from the blankets.

This morning I got to do it. I got to save my baby.

I can't tell if these games are a gift or a curse.


Saturday, March 22, 2014

Elinor

Before Toren, there was another baby. Our daughter was around 2 at the time. I was 12 weeks pregnant and I went for the nuchal translucency ultrasound to find out if there were any problems with the baby. I was given the all clear, baby looked good, no concerns detected. We weren't able to see our OB for another 5 weeks, our first appointment for that pregnancy. When we finally went in at 17 weeks, we discovered that there was no heartbeat.

I was sent to the hospital for an ultrasound to confirm. In the ultrasound waiting room, a young man was going around talking to each of the pregnant women there. He got to me and said that he was a student and was doing some kind of research and would I consent to be a subject. I said, "I'm actually here because there might be a problem with this baby so I don't know if I would make a good subject for your study." He said, "Oh, ok. Thank you." I guess it's hard to offer condolences when you are young and no one has taught you such things, and you are dealing with "pregnant women", not babies.

The scan confirmed that the baby had died. I phoned Peter at home but partway through the call I began sobbing and couldn't really talk.

Because our OB was away, we saw a doctor who was filling in. He asked me to meet him on the maternity ward after my scan. He said, "For some reason, your body is hanging on to this pregnancy." When we first met him, he said we would listen to "the baby's" heartbeat. Before the bad news, there was a baby; now, there was just a pregnancy.

No baby.

I could see that he was struggling to figure out the system to help us. Finally, after much phoning around, he arranged for me to come back in the morning, through the ER, to get on the surgical waitlist for a D&C. We arrived at 9am and I was taken to the area at the back of the ER, where patients wait to be transported up to the various wards. Sitting there with the other patients, I could clearly see the screen with all our names and the reasons we were there. Beside my name it said, "Products of conception."

No baby.

I was brought up to a ward, not the maternity ward of course, but a ward where you are just another appendix to them. There is no talk of footprints, memory-making, or grief. They barely do that on the maternity ward, let alone the other wards. I spent most of the day alone because Peter had to look after our daughter. The surgeon came to see me in the afternoon to explain the procedure. She had a resident with her, a silent soldier keeping watch. After she explained everything, she said, "What I'm wondering now is how you're doing emotionally?" I said, "I'm fine." Brief. To the point. A lie. But I didn't really know that then. She obviously believed me, or wanted to believe me, and said ok and left. I still wonder what her plan was for that question if my answer had been different.

They came for me at 10pm. Everyone in the OR was kind and answered all my questions. I had never had anaesthetic before so I was nervous about that. The anaesthetist came to talk to me and set my mind at ease. Peter eventually found someone to look after our daughter and was there to meet me after my surgery. I was told the surgery would take 10 minutes but as soon as I awoke I looked at the clock and knew it had taken half an hour. There was more bleeding than they had expected and I had to spend the night.

I don't know if I slept. A woman was admitted to the other bed in my room in the middle of the night. I heard her talking in whispers to her husband. She was worried about whether he would be able to come to her as soon as she was out of surgery. I said through the curtain, "Excuse me, there's a room right beside the recovery room where family can wait. They got my husband right away when I was wheeled into recovery." She said, through her curtain, "Oh ok great, thank you. Thank you." I didn't know why she was there and we never saw each other.

In the morning, the nurse came and removed my IV. He said I was discharged but I could wait for breakfast if I wanted. I waited for a little while but no breakfast came. I got dressed and left the ward. I didn't want to wait for the elevators so I walked down, I think 10 flights of stairs, or maybe it was a hundred, and walked home.

A few days later I bumped into an acquaintance on the street. She said, "Oh you're really starting to look pregnant now!" I quickly told her what had happened. "Oh no, I'm so sorry." Then without taking a breath, "You will try again."

At my follow-up GP appointment, my doctor talked about the tissue samples that had been sent for analyzing. (Not autopsy results.) I found out the baby had Trisomy 13, a genetic abnormality. The 12-week scan hadn't picked it up. Some children survive this condition but most do not. As my doctor was skimming the report, she was mumbling along and I heard, "female".

"A girl?"
"Yes, it says here, female."
"Oh."

I realize now that I didn't start grieving the loss of this little girl until Toren was born. She was due one year, and one day, before Toren's due date. She was due January 22nd, 2011 and he was due January 23rd, 2012. She has the same birth stones as her siblings. The month she died, August, the birth month of her big sister, and the month she was due, January, the birth month of her baby brother. She would have just turned 3 this past January. And without her, we would not have had him.

Products of conception. Tissue samples. No baby. I'm fine. Try again.

I was thinking about that game kids play at birthday parties. They have a blindfold put on them and they get spun around and around around. Then they have to find a pinata full of candy, or a donkey to pin a tail on. I think about my time in hospital with her and I think, that was my discharge plan. "Put blindfold on patient. Spin patient around and around and around. Point patient in the general direction of the exit."

By the time Toren was born, I was still blindfolded and spinning.




Tuesday, March 04, 2014

Clutter

I've been feeling like I want to clear out some of our baby things. Stroller, crib, playpen, tricycle. Sometimes I get confused about whether or not they are his things. He didn't get to use them. We didn't buy them for him, they belonged to his big sister. He would have used them, but he was doomed from the beginning because of the wretched umbilical cord.

Are they his things or not??

We ended up donating the stroller this weekend. First we tried to recycle it. No one would take it because it's made up of too many different materials. Then we looked up the dump. Too far away and it costs you $10 whether you bring a load or a single item. So we brought it to a local shelter. Big pat on the back for us. Helping others in need. For some reason, I am just too angry about it to feel any kind of Good about donating this time. If he didn't get to use it, why should anyone else? I resent that. That's why I wanted to just throw it out. We have donated so much in his name. We know so many bereaved families who donate. They donate money, time, their baby's things, they raise money, they buy new things for shelters, schools, daycares, charitable organizations. It's a beautiful thing. And some days, like today, I hate it. Hate it so much.

There is so much clutter to sort through when your baby dies.

*****

Last night I had a couple of nightmares after a day spent with another babyloss mom talking about our babies. It's not the talking that causes problems (talking actually helps), it's the unnecessary memories that clutter my brain, my life, my day, my conversations. I went to bed pretty tired but just before I dozed off, a memory suddenly popped into my head. Peter and I are leaving the maternity ward empty handed. We don't even have the car seat with us. I am hobbling because I had just delivered him 5 hours earlier. The nurses are huddled together in the nursing station and, now I think, avoiding us. This is how I remember it anyway. As I'm picturing this scene, I think about what I haven't yet thought about - he is lying somewhere. I don't know if they've taken him off the ward at this point, either to the morgue or to where they do autopsies (is that the same place??) But he is there, somewhere, most likely on his own, and his parents have not even held him or spent any time with him. They are not caring for him. They are not making sure he is ok. They are not doing their job. They are just walking away. We just walked away and left him.

Because we didn't take care of him in death ourselves, I will always be left wondering if he was well cared for every step of the way. I did try to follow-up, to ask my questions, but I had to give up because I just don't have the energy to keep pushing for a response. I met a woman, a bereaved mother, who contacted the hospital (coincidentally, our hospital) 25 times to get the answers she wanted, needed, about her baby. Twenty-five times. For her it was worth it, she said it went better than she and the nurses could ever have expected. That has given her some measure of peace. But I am left wondering.

If staff aren't trained in stillbirth, then it's reasonable to assume they are not trained in respectful handling of bodies. We met a family who did dress their baby in hospital, but when they went to the funeral home to see her, she was naked under her blanket. Someone at their hospital, or somewhere along the way, stripped baby of her clothes. Shocking and disturbing. When I hear stories like these, I think about the colossal change in Thinking and Doing that needs to happen. And it needs to happen urgently.

I'm guessing no one really expects to be handling a dead body on a maternity ward, especially in hospitals where there is no stillbirth training. I remember our nurses being kind and gentle people and that's the only thing that gives me some hope, that helps me picture that his final journey from us to the funeral home where we picked up his ashes, was peaceful. If I had to do it again, we would not leave him. He would stay with us and we would transport him ourselves to where he needed to go.

I know rationally that we are in this situation because of circumstances beyond our control, beyond any individual person's control, but it does not make you feel like someone is just about to hand you a Mother of the Year award.

There is just so much clutter to sort through when your baby dies.




Monday, February 24, 2014

Parenting Duties

Drawing by Toren's sister.
It was a busy weekend. Friday Peter & I went to a local hospital to tell the story of Toren's birth to a small group of about 10 newly-qualified nurses. I was very nervous going into it, regretful even, but it turned out to be better than I expected. Everyone was sensitive and respectful (which I had expected), and I felt better about sharing my story rather than worse (which I don't always expect). You would think that after 2 years of writing and talking non-stop about this stuff, I would be able to keep it together. Nope! Tears within the first 10 seconds. Several of the nurses also became tearful. So did Pete. Fortunately the mindful facilitators had provided tissues.

I was glad Pete was there to give his perspective. There is always so much focus on the mother that the father is often left out of the discussion, to the detriment of them and their families. I don't like when people say to me "It's harder for you because you carried him." First of all, don't tell me what's "harder" or "easier" for me, and more importantly, Pete lost a child just as much as I did. That was one of the messages we wanted to get across - it's not just 'How is your wife doing?' but also, 'How are YOU doing?' We also talked about connection - how important it's been for us to remain connected to Toren. When I was pregnant, we were very much connected to him. When he died, that connection was traumatically severed. Nurses are in a position to help start the process of reconnecting. Tough job for sure.

As usual, acknowledgement was a huge theme. Acknowledge the baby, acknowledge the father, acknowledge the grief, acknowledge the trauma. Also - acknowledge the extended family. I've been honoured to attend memorial services for babies, and sometimes when I say to a family member "I'm so sorry for the loss of your grandchild" or niece or nephew, the person looks at me a little surprised. They probably don't often hear the loss framed in terms of themselves. I know family members find it difficult, for a variety of reasons, to identify as a bereaved grandparent, uncle, etc. I think this makes it difficult for everyone all around. So we made sure to mention to include family members when you are offering condolences, taking photos - generally supporting the family and helping them create memories.

One part of me worries that these little sessions do more harm than good. Of course it's good for healthcare workers to hear these personal stories. Everything starts from our stories. But it's not really a training session. Not what I would consider a proper, effective training session. I know some hospitals don't do any training whatsoever for nurses so anything is good. But it just feels so urgent, the need to have as much as possible in place before families come in to have their babies. These new nurses are already on the wards, working with families. They are learning so much of it as they go. It's not their fault, it's how the system is set up. Everyone is doing the best they can. But it concerns me that newly-bereaved, traumatized families are being used as a training ground. Their time in hospital is often their only time with their baby. It's so time-critical, and it has to be as right as possible. I guess I'm thinking this is what happened to our family.

Well, we have to start somewhere.

Afterwards, the nurses told us how much they appreciated us coming in and telling our story and how helpful they found it. It's hard to describe the feeling this gives me. Probably something to do with that love thing again.

The next day I attended the Perinatal Services BC Conference, "Healthy Mothers Healthy Babies". I was part of the Still Life Canada team presenting, "Bereaved Parents Break the Silence of Stillbirth". On a program primarily concerned with the birth of live babies, stillbirth was given a place. They understand that if you work in a job that involves caring for mothers and babies, you also work in the field of grief and bereavement. Not everybody gets this, which is why it was so amazing for them to include us. The SLC research team originally applied to do a poster presentation (which means you are out in a lobby or hallway with a poster you hope will draw the attention of delegates in between sessions), and was subsequently invited to do a 20 minute presentation. Our talk was a follow-up to last year's SLC conference "You Are Not Alone: Bringing Stillbirth Out of the Shadows".

Us on the conference program
I didn't realize that we would have to sit through two other sessions first, one about statistics related to stillbirth and the other about contraception and spacing one's children. Obviously I am listening from a different perspective and I did have to leave briefly at one point because it all got a bit too cold and clinical for me. Sometimes, when I hear my experience as Toren's mother being reduced to numbers and harsh medical language, I feel that he is being taken from us again. In certain circumstances, I need to isolate myself for a time to find him again. And cry.

Then it was time for us to go up. We had 20 minutes to cover a lot of ground. With weeks of collaboration and many emails, run-throughs and iterations, we covered what we thought was important. First the moderator introduced the four of us. When I was writing my bio, I thought, "Oh man, some poor person has to read this out loud!
"Andrea has a beautiful daughter at home and a beloved baby boy in her her heart, her thoughts and her actions. Her son, Toren Edward, was stillborn due to an umbilical cord accident in January 2012. She grieves him through remembering and through helping others."
Each of the speakers in our group had something similar within their bios. At one point during these introductions, the moderator stopped and looked at us and said it was hard to introduce us because she felt that she was not doing justice to our stories. For me, that was amazing - to have her pause and acknowledge that what was happening in that room was something special. The normal conventions and etiquette of conference behaviour no longer apply. You must deviate from the usual script. You can pause and be human. She won us all over instantly with that gesture. I just thought it showed so much compassion.

My job was to cover the history of Still Life Canada. In 3 slides. Two minutes and 12 seconds. Eep! I started with Toren's story and worked my way out from there. It was all going swimmingly, but I forgot to factor in the crying time! Yes, after practicing these 3 slides about 800 times (give or take 100), I broke down in front of a very crowded and pin-silent room. The audience was made up of doctors, researchers and healthcare professionals. They had just sat through two other presentations filled with numbers and medical jargon, and if memory serves, none of those other presenters burst into tears. So I paused, we all paused, and took some deep breaths. I grabbed my handy dandy tissues and I continued with my talk. About a year later, I made it to the end of my slides. I took my seat and felt...ok. Fine. Pretty good actually.

Me white-knuckling my notes in front of an attentive,
respectful & compassionate audience. Photo by M. Farrales.
At the end of our presentation, I was feeling really calm, relaxed. We had done it. We did what we told bereaved parents we would do - tell their stories in the hopes of improving care for families coping with stillbirth. We take very seriously our role as care-takers of these stories. We concluded and opened up the floor for questions. The audience burst into applause and everyone rose to their feet to give us a standing ovation. Cue the tears again! So emotional. The moderator came back to thank us and named each of our babies. Yet another display of sensitivity and acknowledgement.

It was fantastic to feel that support. You think you're coming to tell people things they don't want to hear, and they tell you they want to hear those things and they need to hear those things. And they show that they stand for you and with you. Indescribable.

Please go to the SLC blog to read Jaime's excellent and more detailed description of what went on - Standing Ovation. Her role was to read actual quotes from bereaved parents who attended the SLC conference last year. We all agreed, she had the toughest job of the four of us. To be the voice of parents. It was incredibly moving.

Sunday was a day of rest. I was exhausted and quite tearful throughout the day. This is my usual reaction after I've done some intense work. I'm ok with it. Getting used to it. There will be many other opportunities to talk about Toren in these types of settings. I will never, ever look forward to it. But I do look forward to seeing change happen because he lived and because he is loved. This is one of the ways we will carry his spark forward to cast its light on the world. It's not the same as him just being here and doing it for himself. He can't, so we're doing it for him.

Christmas Day, 2011.
Twelve days before he was born.

Sunday, February 16, 2014

How Was Your Day?

Every day with our daughter is a good day, the very best.

Every day without our little boy is a bad day.

The very worst.



Thursday, January 30, 2014

Real

A friend asked us what we call the day he was born. "His birthday." (Or sometimes in my mind, "His birth day.") It's a fair question. If you haven't had a baby die at the time of their birth, you can have no way of knowing what it's like. Even we have had to learn a new language. What I wanted to say was, 'If one of your kids dies, trust me, their birthday will still be their birthday. And you will mark it. Whether quietly in your heart or by baking a cake.' But you're not allowed to say that. Understandably, people don't like any allusions to the possible death of their children. I think it a lot. 'If your child dies...' But I never say it.

It has recently occurred to me that many people think that I am grieving the idea of a person rather than an actual, real person. That I am only grieving "lost hopes and dreams". He is not an idea, a hope, a dream or a ghost. He's my son, my child. The baby I carried and delivered, the child Pete witnessed me carrying and delivering. It's sickening that I would have to even assert that at all. When someone we care about dies, of course we grieve our hopes and expectations of those relationships. But we are also grieving the actual person. We miss their physical presence and their unique personality. Toren had a physical presence and a unique personality. Just because we didn't get to see them, doesn't mean he didn't. When our daughter was born, I remember her unique characteristics started to come out right away. It would have been the same with him. Even during pregnancy, we got to know things about him.

I have heard from other babyloss parents that friends and family don't think their child is a real person. I find that brutally sad. I'm not sure what the world thinks we're doing. I guess they think that maybe we're crazy or "drama queens" or perhaps attention-seeking. The worst kind of attention. At this point, three years into being his mother, I don't really care what people think of me. It doesn't matter. He's my son and that's it. I couldn't ignore that even if I thought it was a good idea.

I can take it. I can take the lack of understanding and the avoidance and the contempt. I still get angry about it, it still upsets me, but I can take it. What I can't really take is that some people are trying to delete his life, to erase any trace of his existence and say that his life had no value. That the memory of him, the spark he left with us, has no value. All because the thought of a baby dying makes them uncomfortable.

I don't know if I can keep taking that.

Dear Toren, our beloved baby, we will never forget you. It's not even a possibility. You are loved. You always were and you always will be.




Wednesday, January 29, 2014

You Were Loved

For children grieving a stillborn baby, this book is oddly appropriate. I don't think the authors intended it.



by Eve Bunting & Karen Barbour

Sunday, January 26, 2014

Family Portrait


This photo represents our family beautifully - Peter and I side by side, our daughter leaping joyfully alongside us, and Toren, also travelling alongside us yet invisible to most of the world. He remains under the surface, where we live. We know he is always there.

Tuesday, January 21, 2014

Family Time Inspired By Him

Toren's 2nd  birthday was an important time for our family. We received so many messages of love and support from our friends. Candles were lit, friends in Hawaii wrote his name in the sand and we knew that for some part of the day, he was remembered. So grateful for those friends.

Before his birthday, we went away for a few days to Whidbey Island and did some beach combing and treated ourselves to some yummy seafood. The guesthouse where we stayed was run by a friendly, cheerful woman who told us that she has 5 kids and 15 grandkids, and that her husband had died within the last year. Cue the compassion! She was explaining why the DVD player was broken because that was the sort of thing he took care of, and that she was on a "steep learning curve". No kidding. Grief is a steep, steep learning curve. Learning to live without someone you love takes work. Figuring out that the relationship is not over, that it continues in a different form, is a harsh lesson. I spent much of our time there thinking about him, wondering what he was like, about how difficult this past Christmas must have been for his family and how many people must miss him.

Pete said he wanted to be home on the day of Toren's birthday so we travelled back the day before and spent a lovely day doing things inspired by him. In the morning, we baked cupcakes and packed them up to take with us on our day out. We went swimming - nice to do on a weekday, when it's not so busy. The swimming was my idea. It seemed like a good day to float. The hot tub was nice too. We had lunch at one of our favourite restaurants and then headed to the infant area of the cemetery to lay some flowers. It was a sunny day, not mild but not raining, so we spent some time walking the paths and reading the stones carved with babies' names. Afterwards we went to our friends' place to take down the decorations from Toren's Christmas tree. By that time the sun had gone down and it was freezing cold so we did it really quickly, no time for emotion, let's just grab these things and go! It was kind of funny. I decided to make a soufflĂ© for dinner. I had made it only a couple of times before and it's a nice recipe. It's not that I think he would have liked it, I just wanted to do something "special", or at the very least, something different. The results were disastrous (possibly even hazardous!) and we ended up having leftover spaghetti. Pete's still annoyed that we wasted 6 eggs! Ah well. Our friends had left some treats under his tree and we left them some (frozen) cupcakes. Later they texted and said, "We want to eat the cupcakes with you!" so they came over for a visit in the evening and we had cupcakes and tea and talked about our babies. All in all a really nice day. The sadness is always there, but you can have that and have a lovely day too.

We're going to try to take a little trip every year and then spend time together as a family on or around the day he was born. I think ahead to when our daughter is older and has her own busy life. Toren's birthday will be another time during the year when we can reconnect and share our experience as a family, whether we actually get together or connect in other ways. I have read accounts from grown-up bereaved siblings, they fascinate me. I hope our daughter never says "We just did it for my mom." I want her to continue to attend to her own feelings about Toren, not just go along with mine. I'm the mother, she's the sister, it's going to be different. If she doesn't want to keep going to the cemetery, or doing the things we want to do, that's totally fine. We can still meet for lunch and spend time together as a family. Or talk on the phone or skype or whatever exists when I'm an old lady. I'll try to keep up with the technology.

Whidbey Island Photos