Making Memories

I made this video with my husband this past spring. It was a project for my University that brought to life an idea I've nurtured for a while. With great feedback, I thought I would be sending it far and wide, yet I sat on it unable to move forward while waiting for the right moment, for a sign, for strength.

This morning I learned a new word - Sankofa - a concept from the Akan people that means to "return to the past to move forward." I worried that Making Memories would be misunderstood because it looks to the past to the things we did and did not do, to the things we cannot change. "Retrieving the past is not taboo, thus say the ancestors" - this quote started my day and answered my purpose, why I do what I do (here is the article that introduced me to the meaning, www.africa.ufl.edu/asq/v9/v9i3a3.htm). Looking to the past to our daughter's stillbirth is not a weakness, it is where we find the strength to move forward to improve the experiences of other parents who are yet to walk in our shoes.

The Making Memories video is based on a letter I wrote to bereaved parents who received one of the memory boxes we donated to a local hospital for Amelia's second birthday. I didn't want to tell the parents what they must do, instead I wanted to tell them what we appreciated and what we regretted in hopes that they will be more informed in making their own decisions.

While making the video I also referred to research done by Dr. Joanne Cacciatore and many others in the field that reaffirm the need to support parents in making memories, in making a connection with their still born baby, being that it is natural to want to see and hold your newborn child and that death needs to be faced, acknowledged, and grieved. Memories made with their baby help parents grieve when there are very few tangible things left from their stillborn child. Caring for Families Experiencing Stillbirth | www.missfoundation.org

So, here it is. Please help us spread this far and wide in hopes that it will help others in facing stillbirth.

Two Years Six Months.

I'm having a bitter-sweet day today. The weather is beautiful and I have no plans but to hang out with my son. We are all healthy and well.

But my daughter would have turned two and a half, had she lived. I would have been happy, proud, excited. Instead I'm sad, tired, and grieving.

I can't say that I'm surprised by this feeling, but it also feels like it came out of the blue, this grief day.

Grief is hard work. Lately I've been getting lots of breaks in the land of the living-child mommy-hood. It's a nice place. I hate to leave it to visit the land of the bereaved, but I get no choice. If I did, Amelia would be turning two and a half today.

What is your daughter's name?

I was playing with Mr. Wiggles at our local coffee shop. A woman came in with a gaggle of kids. The youngest, a girl of about four, went straight to the kids corner and started playing with us. It was neat to see her interact with Mr.Wiggles. She asked what his name is, and I told her. I asked what her name is, and she told me. Then she asked what my daughter's name is, and after a moment of brief hesitation, I told her. I've never met this girl before. I don't really tell young kids about Amelia, I just don't know how. But she didn't ask me IF I had a daughter, she asked me what her name IS. 

This is something most adults are so afraid of doing, yet this little girl made my day by asking. I have no idea why she asked, how did she know to ask, if there was something she knew, or if it was just something she asked without thinking. She told me she has a sister who is two and a half. Of course she does...

I don't know how the universe works, but today I'm both, laughing and crying. 

Conversation with a Big Sister.

I have a little buddy in our park, a little girl who recently became a big sister. Mr. Wiggles is just a few months older than her brother, so she is very interested in sharing and comparing...

Today we had an interesting conversation. It felt nice to talk to this little girl, as I felt somewhat closer to my own little girl... Yet it broke my heart as she told me how she doesn't get much sleep these days with her little brother crying every night. She told me how she picks the buggers out of his nose because her parents don't. She told me how she teaches him how to point at things, how to shake his booty. She shared her sisterly love, excitement, and responsibility for her little brother. 

My heart broke as I watched Mr. Wiggles and thought how he will never get that from his Big Sister. I know she watches over him and is always with us, but it's not the same... And I kept wanting to say that he also has a big sister. And I didn't know how to say that to a six-year old...  

Other Two-Year Olds. Alive or Dying.

I come across a lot of two-year olds. Maybe it's just that the age of two is more prominent in my mind, since Amelia would be almost two-and-a-half. Still, they are everywhere: at the playground, in a grocery store, and in the news.

The news... I just read a story about a boy, a few months older than Amelia, who is dying. Another girl Amelia's age recently succumbed to cancer. Other ones died in car crashes, accidents... FUCK!!!

I can't stand it. The realisation that these parents are joining me now in missing their kids, now two but next year three, then four, five and so on: It will never end. I can't stop it. My heart just breaks for them. My heart breaks for all of us. And as the years go by, there will be more and more of us in this club of parents missing their kids...

I used to be jealous of the people whose children got to live, even a little bit. They got so much more than I ever did with Amelia, just as I got so much more than those who lost their kids before full term... Still, I can't imagine what parents who lose their two-year olds go through.

The reality is scary, we have no control over our lives, and being a bereaved parent makes it impossible to pretend otherwise.

Sorry, no happy note to end this post today. Although as I'm sitting here, typing, a humming bird came by my window. I've never seen her come this late in the day (it's almost 8pm here), she usually comes in the mornings. So, I guess Amelia was here, with me, as I wrote this. And I love her.

First thoughts after the Conference.

I wrote this as we took a few minutes to catch our breath outside the venue...

The conference has drawn to a close and everyone went home. Here we are, standing by the entrance, the last ones to leave. A family next to us pulls up in their car and a family of three emerge: father, mother, and daughter. My heart pulls a little (actually, a lot), thinking that this is what should've been, could've been. It will never be and it hurts.

And then there comes Guilt. She says, you have a son, how dare you feel this sadness and wish for your daughter! Would your son be here if she was?

I dislike Mrs. Guilt very much...


Then I look over to the side and see my daughter in her Mimi-doll, sitting quietly in my son's stroller, one model-year newer yet the same as hers would have been, and I realise: I do have a daughter. And I have a son. This will always be. Not the three of us, but the four. And I am now OK with it.

This is something I owe to every person who was in the room at the conference this weekend: participants, presenters, volunteers, and organisers. What a beautiful event it was. Filled with tears, laughter, hugs, and understanding nods and glances. Lots of tissues were used, lots of tea and coffee drank. I also feel that a lot was learned by everyone, a lot was shared. So much support and love for each other. I hope new connections were made that will turn into much needed support and eventually into friendships that will last a lifetime.

It was a beautiful gathering of truly amazing people.

Thank you to everyone for making it possible.

Fear. Part 2.

I've been trying to analyze this mind-boggling fear that cripples me sometimes, oftentimes. It seems that I need help... I probably do. Yet, I fear that if I do get help, if my fear lessens just one tiny bit, it will be enough to cause $#!t to happen again. Yes, it's not logical.

There is nothing logical in the death of a perfectly healthy baby either.


There are two parts two my fear.

One is the Fear of Death of my Child. This is a big one. The silent scream at the realisation, the world spinning as life as we know it ends. The end...

Two is the Fear of Life After. That scary, awful, brutally painful place, it scares me as much as the first fear. The helplessness, the misunderstandings, the platitudes, the millions of others who have what we lost...


Last night we stayed up all night watching Wiggles sleep, just to make sure we'll make it to through the next day, just to make sure he will live. Just in case. Yes, I'm tired and sleep deprived, I've been staying up for close to seven months now, making sure. Still, it's so much better than the other option...

I guess Fear is my best friend and my best enemy these days.

Fear.

After dinner, as usual, I went to put Wiggles to bed. We co-sleep, so I nurse and hug him until he falls asleep in our family bed and then sneak out.

Sometimes it takes almost an hour, sometimes just minutes. Today it was very fast.

Sneaking out of our bedroom, I was excited that I get to have dessert before 9pm. I went to the kitchen and made us some ice cream with fresh fruit. Then I went to check in on Wiggles, as I always do. When I opened the bedroom door, he was laying on his back, one arm up above his head, quiet, silent, almost pale, his mouth open... Mouth open the same way as Amelia's mouth was open... It was just hanging open every time we moved her.

Cold sweat rolled over my whole body, yet I knew he was alive - his chest was moving. I'm like an eagle and can spot that movement in the dark, from far away. Yet my brain just didn't believe it, his mouth was open and he looked so pale...

He just looked ...


I feel like I live in fear, all the time. I can't help it, and I'm afraid that if I do, something will happen.

A Beautiful Post By A Friend, on Dignity & Compassion

Recently I blogged about an article in the Calgary Herald that talked about a stillborn baby and the rights of the baby to dignity and compassion. I didn't get into the story of the baby's mother, mostly because I really don't know what happened there and anything I say will be speculation.

But this mother and her baby stayed in my mind... The other day I spoke with a great friend of mine, Toren's mom, about the mother of this baby. While Toren's mom had so much love and compassion for this mother, I was unsure and skeptical. Why was I feeling this way?

The mother delivered her stillborn baby at home and hid the baby's body on her balcony, wrapped in a plastic bag. How could anyone do that, I thought? There is no way she told the truth, I thought... Until I went back to that awful place I avoid and remembered what it was like to give birth to Amelia.

This conversation with Toren's mom reminded me of the shock, the fear, the unimaginable, indescribable place where time stops and life looses any meaning, a place where the ground falls from your feet and the ceiling spins so hard you can't breathe. This is the place where a mother finds her newborn baby dead. Where birth and death meet and she is in the middle of it all, in pain of labour, in pain of loss. A piece of her dies with her baby. How is she expected to be rational, to follow some rules and norms that make sense to others, yet nothing makes sense to her, when she just died with her baby, all while she still breathes...
 
On Stillness: Dignity & Compassion

Between two worlds. What a lonely place.

Today I came across a post written by another bereaved momma, with a similar story to mine that happened a few years prior. I'm so grateful that she shared her self, that she spoke out, and that I found her.

Today I went back to the hospital where Mr. Wiggles was born, nothing major, just an ultrasound that I needed to do... Back in the same ultrasound room where we thought we got a glimpse of Mr. W's boy bits, I proudly announced to the tech that I came here a lot when pregnant with my son. It was a happy feeling walking that hallway, that entryway, that block. Mr. Wiggles was born alive and screaming here.

Yet one thing would not leave my mind. As this happened to be almost six months after his birth, I remembered a visit we made to the hospital where Amelia was born, a visit that came exactly six months after. We walked into the hospital through the entrance that I was wheeled out of, in shock, with a box on my lap instead of a baby. Empty bellied, broken hearted. That day, six months after, I returned to the hospital to seek help, gosh, I needed it, I was sinking deeper and deeper into grief, dispair, horror of my life. I didn't get it there. Instead, I had a full on panick attack and emotional meltdown from just being in that place again, some kind woman showed us the back way to the mental health area. Another woman who saw me there told me I needed to calm down. ...
Don't really want to go into this, but it didn't help. At all.

Going back to today, I feel that since Wiggles was born, I've been living between two worlds and it's so lonely here. So. Unbearably. Lonely.

Here is what this other b.momma had to say about that:

"I did not feel like a normal mother. I was happy with Liam but I was incredibly lonely. I could share that there had been a baby before Liam, but nowhere, not in any mother's group or playtime was there the space for me to truly tell my story. Nobody could see me only months before, alone, sobbing on a carpet that was soaked with my tears. Nobody else knew the animal cry of a bereaved mother's wail, ricocheting through the darkness of the night. I was walking around with this living baby, a smile on my face, but I could still hear that wail ripping at my soul. I could still feel the quiet, unmoving baby I had held before Liam. I was the mother of two, yet I was silenced from that truth. I simply assumed this was how it had to be."
http://www.huffingtonpost.com/motherwoman/mothers-speaking-the-trut_b_3248784.html

This is so true, every word of it. I couldn't have said it better. 

Dignity. Compassion. Gratitude.

This Mother's Day, I would like to share with you a present, something that was written by a person I never met, decided upon by a person I never knew. Yet, it went right through to my core, gave me strength, hope, and love. Strength to go forward with my story, hope for a better future for all parents of stillborn children, and love for all the kind people in this world.

The story in the article is about a mother, a bereaved mother, and a confusing, awful situation she is in. I can't comment on it as I know nothing about it and don't wish to speculate.

The part that I really care for is where it makes a distinction between a fetus and a child, calling a stillborn baby a "child in the fullest sense of the word, ready to be born, yet a child whose eyes will never open on the beauties of this world." So gently, beautifully, carefully they defend the parent's right to grieve their baby. Not a fetus, not a dream, but a child.

This comes from the compassion within their hearts, backed by the Supreme Court of Canada and their decision to treat a stillborn child as a person. So confidently they make a distinction between a wanted abortion and a dreaded stillbirth, I now can do the same.

My daughter was a child, a child that lived (within me) and died (within me, also). I am her grieving, loving Mother and always will be.

I cannot thank you enough, Calgary Herald, for your compassion. Thank you. This is the best Mother's Day gift our society could give to a mother of a stillborn child, at least in my eyes.

Editorial: An infant’s dignity

A friend shares her story of the stillbirth of her son, Toren.

On Stillness: January 6, 2012, 03:00 - 12:47

I really relate to what Toren's mom said about the shock, the feeling that everyone is just staring at you and not doing anything to help, to the feeling of the world just falling away and the mix of death and birth alternating in the mind, mixed with shock. Lots of shock.

Just want to highlight this: I believe parents going through stillbirth are Not Clear-Thinking Consenting Adults. They are people in the state of Acute Shock, and should be treated accordingly. With Care and Consideration.

Lots of love to you all.

The Vancouver Sun Run 2013

Today we walked with our friends and family to remember our babies and to raise funds for the Conference that Still Life Canada is hosting in July 2013.

It was a beautiful sunny day, albeit very cold and windy. We wore our team t-shirts with pictures and names of Amelia, Scarlett, and Toren: they were there with us every step of the way.

Every time the wind blew, the cherry blossom petals danced in the wind, reminding us that even though we can't see them, our babies are always with us. When the sun came out, we knew they were smiling with us.

Thank you everyone for your generous donations to our cause. If you haven't donated yet and would like to contribute, please visit www.still-lifecanada.ca to make a small donation today.

With love,
Amelia's family.

Fundraising for Amelia's Second Birthday.

Dear friends and family,

It has been two years since Amelia was stillborn. She should be running all over the place, potty training and stringing sentences together, but she is not...

On April 21, 2013 we will be walking the Vancouver Sun Run with Amelia in our hearts, pushing an empty stroller to raise funds for a conference Still Life Canada is hosting this summer.  The conference will give parents and healthcare professionals an opportunity to collaborate on building a community of support and informing changes in the healthcare system.

Please support us by sponsoring our walk to help cover the costs of this important event. With a donation of $10, $20, or even $50, you can help us reach our $1000 goal and help us create a better community of support for parents of stillborn babies.

For more information please visit Still-LifeCanada.ca

Three ways to donate:

By cheque: please make cheques payable to Still Life Canada and mail them to 529 - 3381 Cambie Street, Vancouver, BC, Canada  V5Z 4R3.

In cash: please give your cash donation to us in person.

Online: we accept any major credit card, 
please visit still-lifecanada.ca/01/contribute to donate through PayPal.   

Thank you for your generous support,

Alena, Dan, Mariya and Mr.Wiggles. For Amelia.

Same Time Last Year, Amelia Was One.

Same time last year we were celebrating Amelia's first Birthday. It took me a year to write about it.

Why?

Living it is one thing, I don't have a choice. I make the most of it as I go.
Writing it is a choice. It makes it real. I didn't want it to be...

Now, a year later, we attended two other first birthdays of our friends' stillborn children. These beautiful bittersweet events helped me look back and accept.


We started preparing for Amelia's first birthday early, before Christmas. We had this overwhelming desire to make a small difference in other children's lives and we knew it would help us get through our grief. Slowly but surely we collected a package of art supplies: colouring books, crayons and paints, that we shipped to an orphanage in Belarus, my homecountry. That particular orphanage is home to 80 children, all preschool age. Thinking of all those children living in institutions always made my heart hurt, so we did what little we could: we sent them a box of smiles. The package arrived just in time and was delivered on the first anniversary of Amelia's last day of life... I received these beautiful pictures on her first birthday.

We also wanted to help local kids, so over time hubby and I collected same art supplies as well as legos and summer clothes for a little girl. This package we donated to a local shelter for women and children. It was hard buying all the pretty dresses, knowing I should be getting them for my daughter. Yet it helped, at least I got to buy them and bring them home...

In the weeks and days leading up to March 25, I spent quite a lot of time making cherry blossoms from sugar paste. I believe I made close to fifty fragile flowers to decorate her birthday cake (actually, it was two cakes, I wanted to make a two-tier cake but the top one was too full of chocolatey goodness and way too heavy, so one cake became two :).

All this activity helped us get through the anticipation of the day.  It felt good. It felt sad.
Sweet, yet bitter.

On the day of her birthday, friends and family waited for us to decide whether we wanted to see anyone or not. We were in such an overwhelming place, an uncharted territory, it was hard to predict what we needed to get through. In the afternoon, we felt we needed to see them, we couldn't stand being alone. In less than two hours our house was full of friends, smiles, hugs, and good food. We greeted the evening with a party, with cake and candles, just like it should have been. It was beautiful.


We are so grateful for everyone in our lives. Everyone who came to the funeral. Everyone who came to the first birthday. Everyone who stuck around for all the good and the ugly in between.

Thank you.

Introducing Still Life Canada

In the first year of Amelia's life and death, as I processed everything that happened in the 24 hours between "I'm sorry, there's no heartbeat" to us leaving the hospital without our daughter, I realised that I was lucky to have the memories and keepsakes that our midwives and doula helped create. At least I had something...

Still, as I walked the path of grief, a lot of things were missing, Amelia was missing. 

The more I searched for support and meaning, the more I realised how little understanding there is of the process of stillbirth and its effects on families. I felt so alone.

In the second year of Amelia's life and death, I met two families who were walking their first year of grief. As we shared stories of our stillborn children, born at term in three different hospitals of one city, we realised how it was luck that decided what we got and what we missed during the precious last moments with our babies and the events that followed. 

It was also luck that brought us together, yet we felt anything but lucky.

Over coffee, lunch meetings, potlucks and walks in the park we decided something had to be done. We knew there was a gap in services, understanding, and awareness of stillbirth and we wanted to make sure parents walking in our footsteps will have less regrets and more memories. 

This is how Still Life Canada was born.

Still Life Canada: Stillbirth and Neonatal Death Education, Research and Support Society is a non-profit organisation that provides bereavement support for anyone affected by stillbirth and neonatal death and promotes research to reduce both.  As bereaved parents, we accompany others in their discovery of healthy grieving practices, work towards building a caring and compassionate community, initiate personal and professional development networks and provide opportunities for dialogue among parents, families and community.

Please visit our website Still-LifeCanada.ca to learn more.

With love,

Amelia's Family

Salt.

I'm finding it hard to breathe, my mind is gasping for air but my lungs won't move. My heart is breaking into a million pieces, all over again. Once again, I'm crying myself to sleep.

Next to me is my son, sleeping peacefully in his crib. Her crib. Tears roll down my cheeks, quietly, as I think of how she should be tucked into her bed tonight. Instead she is in her grave. GRAVE. My daughter, my beautiful little girl, has spent almost two years in her grave. She should be a big girl by now, running, talking, playing. Instead I feel like I'm loosing her. Time takes me further and further away from her. I hate it.

I'm so tired of grief, of this pain, of this foreverness. It's only been two years though, I have the rest of my life to go.

I try to pretend sometimes that I don't have it, the Grief. I smile and act all happy.

Lies.

It's not happy.

I'm not happy. Not in the way the "innocent" people are.

My "happy" always has a grain of salt in it, a huge big pile of it, actually. Right in the middle. It makes a lot of the stuff taste butter, but at the core it's too.much.salt.

Little feet.

Today was the first day when I actually played with Mr. Wiggles' feet. Up until this afternoon I focused on his hands, face and anything but his feet. I kissed and cleaned them, but I saw them in a fog.

When I was pregnant with Amelia, she used to kick me in the ribs with her little footsies. It was cute and painful at the same time. I used to have to really push my arm into my rib cage to stop her from bending it outward. The whole time I couldn't wait to meet my little girl and kiss those feet.

The day she was born I thought I'd never get to do that. Thanks to my midwife, I got to kiss her foot once. Just once. She unwrapped her leg from the blankets and that's when it really hit me...

Backpacks.

The day Amelia died a weight was put onto my shoulders that I can never take off. It feels like a large, heavy backpack with straps that reach around my whole body, preventing me from taking a deep breath.

When I first got it on March 24, 2011, it was so much bigger than me. For a long time I could not get up, let alone walk with it. It took months before I could lift it off the ground, and almost a year before I could walk with it without falling. In that time it didn't get any smaller, instead I got bigger, stronger.

This awful backpack is not just overwhelmingly large, it is also excruciatingly painful. It is covered in spikes, large and small, for all the things I will ever miss with my daughter. They dig into my body at all times, taking turns in what hurts where. Sometimes it's in my heart, sometimes in my arms. It never stops hurting, but I'm learning to live with the pain, pretending that I'm ok with it.

As life goes on, other stuff gets added to the pack. For example, my sweet Mr. Wiggles came with his own backpack, light and soft, it is full of love and joy. Some days it helps me carry my other one. Other days it makes it harder, as I learn to carry the pain while feeling the joy. It's jarring how out of balance my two backpacks are, so painfully different, yet the same, because they are both mine and I love them no matter what...

Grief. Almost 2 years in.

Grief is a continuation of love. 

You can't grieve a person you didn't love, you can't not grieve a person you loved. 

To deny grief is to deny the existence of love. 

Grief is normal, after all, they do say that love hurts.

Five Valentines Days

My dear sweet girl. As you must know, you papa and I have been together for five years this Valentines day.

Today, as we spent the day with your papa and little brother, I missed you so much I can't find words to describe my heartache for you.

I look at the crib your grandma bought you and you are not there. I took down one of the butterflies I had on your wall and you are not there. Everywhere I look are little girls and their parents. But you are not.

I love your brother and I can't imagine my life without him. Still, I can't quite believe I have to live my life without you. Would he be here had you lived? I think he would have.

You should be sleeping in your crib while your little brother sleeps in his... And your papa and I should have both of you in our arms tonight.

We are one and the same.

I found a sister in pain in the most unlikely person.

While we were waiting to get a blood test done for Mr. Wiggles at a local hospital (our last jaundice test), a woman and a man came into the empty waiting room. They looked rough. Definitely drugs. Definitely street life. I stood back a little, unsure of what to expect.

With a cheerful smile the woman said: Congratulations!

She meant it, I realised, with the most sincere of hearts. I thanked her for that and looked her in the eyes. There was something there...

My baby is in foster care, they took him away when he was three months old, she said while reaching into her plastic bag to pull out a picture of a beautiful little boy, blond with chubby cheeks. The picture was attached to the plastic bag with clear tape, to save it from the rain and from being lost...

The next gesture she made was like looking in the mirror: she pulled her sleeve to reveal her baby's footprint tattooed onto her forearm. I took a step closer, pulled my sleeve up and put Amelia's footprint on my forearm right next to hers.

In that moment we were one and the same: two moms who lost their babies and who miss them deeply no matter what.

Two Children.

I'm out and about quite a lot and that exposes me to people. Many people. Ugh. Well-meaning strangers love to coo at the baby in my Ergo and ask if this is my first. Except for the first time that happened in the hospital, when I said YES, I always answer that Mr. Wiggles is my second. That response is most often followed up with an inquiry about my first. I always say that she died almost two years ago.

... Insert awkwardness here...

I hate to be that person.

But I can't say that Mr. Wiggles is my first, even though some people tried to convince me that he is. People like a neighbour with two kids and a random lady at a grocery store. Those who have all their children alive and well.

You see, I have a daughter. Her name is Amelia. She lives in my heart. She would have been twenty two months old. Today.

I also have a son. His name is Mr. Wiggles. He lives in my arms, most of the time. Sometimes he tolerates an Ergo or a bouncy chair. He is seven weeks old.

This is simple. Both my children I carried to full term, eagerly awaiting their arrival into the world. Both my children I gave birth to. Both my children I love with all my heart. Both my children shape the person I am today. All children are different, so are mine.