Book Review 2: 'Notes for the Everlost' by Myra Chronopoulos
“When my son died, I found myself feeling extremely isolated and still trying to comprehend my devastation. Shortly after returning home from the hospital, another loss mom gave me a book and told me that while nothing will make my son’s passing “feel better”, I might not feel as alone.
 
In Notes for the Ever Lost: A Field Guide to Grief, Kate Inglis describes her own journey through grief. A story of twin boys born prematurely, fighting for their lives, one survives, the other does not. Inglis navigates through all the aspects of bereavement and reflects on the emotional survival that one faces in that first year of grief and the years following. Her words are raw, honest, comforting, and relatable. She provides her own account of experiences but also wisdom and warnings to the newly bereaved of situations to come, and how you might prepare for them.
 
In my darkest moments, I felt seen by someone who truly understood the complex array of emotions that only a bereaved parent comes to know. Inglis offers a vulnerability and compassion in her writing that gave me hope in the early months of my grief that I might survive this and one day, be ready to face the world again. I would recommend this book to anyone suffering the loss of their child.”
 
Please visit Notes for the Everlost — Kate Inglis writes books for more information on the book and the author.
 
These are two books of many that can help you through your journey. I hope they will help you as much as they have helped our community members.

​Please see below for some other titles that may be helpful during a difficult time. 

Commercials and ads show happy moments with mothers being gifted beautiful bouquets of flowers; hand drawn cards; and wonderful brunches with their children. I knew I would never get to have that type of experience on Mother’s Day because my daughter was not here with me. I sobbed in pain because I grieved the precious moments that were robbed from me. Am I really a mother? Would others recognize me as a mother on that day? Even though she died, part of me felt like that day was for me too. At first, it was hard to think of myself as a mother because I was not experiencing motherhood as I had hoped. I was not facing sleepless nights or celebrating milestones. I did not know what it was like having a newborn at home. After a month of going back and forth, I suddenly realized, I wanted to be treated as a mom. I carried my baby for her entire life. I nourished her, I sang to her, I took care of her and even though I do not
physically carry her around in my arms, I still carry her with me everyday in my heart. I hoped that others would recognize me as a mother. I hoped that they would recognize that day was meant for me too. I cannot really put into words why that was so important for me, but it just was. When that day came and I received amazing gifts and kind words from several loved ones, it really made me feel like Zalayah was/is loved and remembered. I realized how valuable it was to me to be able to talk about her with others, to keep her memory alive. I wanted to be honoured and celebrated as Zalayah’s mother and it meant a lot to me that I was because even though she was born still, I am still her mother.

This week I listened to two podcasts that were very meaningful to me.

The first podcast is Special Episode 19: Mother's Day with Taylor Ashley Bates. Taylor walks us through her first Mother’s Day experience after her son, Ellis, was stillborn. She also struggled with whether she was a mother since she did not have a living child. A lot of the feelings she had experienced, I did as well. Taylor not only goes through her personal story and how she felt, she also recognizes that it is okay if you do not want to be recognized on Mother’s Day or if you feel positive feelings related to that day showing us there is no “right” way to feel or experience that day. She recognizes that motherhood is often defined by its challenges after bringing baby home, but what I really liked is that she stated bereaved mothers face challenges as well, and although they are different from the traditional ones, they are worth celebrating and that really resonated with me. The podcast ends with a meditation which has been something that I have been doing more lately. Meditation reduces my stress, helps me to control my anxiety and has increased my self-awareness. I really enjoyed this podcast and hope you will too.

The second is  5 Ways to Love a Grieving Mom on Mother's Day | Episode 78 — The Morning with Ashlee Proffitt. This podcast validated how I was feeling around Mother’s Day in 2020. It is something I wish I had listened to at the time as it can help others know how to show up for and support a grieving loved one on Mother’s Day. It also demonstrated to me that I am not alone in how I was feeling since Ashlee shares messages from bereaved mothers. I really appreciate that Ashlee Proffitt thanks those who are supporting their loved ones through grief. Without the friends and family who have helped me through this difficult time, it would have been a lot harder for me to get through it and I am truly grateful for them. There are a few minutes where Ashlee is reciting bible verses and I must be honest, my faith was shattered when my daughter died, and I am still bothered when people refer to God and God’s will etc. when it comes to her passing so that part was not for me, not yet anyway. But I can appreciate that it may mean a lot to others and I have a great respect for those who have maintained their faith. Overall, I believe this is truly an amazing podcast that should be shared with support systems as she really gets what is important for a mother who is grieving their child on Mother’s Day. She is right, we are mothers to, I want to be recognized as a mother, I want to know that my baby is not forgotten, and my motherhood is valued and worth celebrating. I hope that her words resonate with you as they did with me. ​

Grief has been a major part of my life since that day and I have spent the past 14 months navigating this journey, realizing how lonely and isolated I have felt in my grief. ​

Even though her life was very short, I still wanted to talk about Zalayah and my experience giving birth to her, holding her, taking pictures of her, and saying goodbye to her; yet it felt like those around me just wanted to move forward and did not know how to bring me along with them, so they left me behind in the past. Losing a baby is such a sensitive subject in society that many people did not know what to say to us. I know if it happened to someone I love; I probably would not know what to say either. As her mother, I want to ensure her memory is kept alive by talking about her whenever I can and sharing her photos. At the same time, I do not want to negatively impact others by bringing up such a difficult topic and discussing how sad, hurt, and traumatized I feel every time they reach out to me. I have also hesitated to share her photos out of fear I will offend someone. I admit, I never really reached out to people at first to tell them what I needed but it was too difficult to put it into words, so I remained silent.  

Everything I read was very accurate for us and I began to realize that even though my husband was not expressing his grief in the same way that I was, he was still grieving. Little did I know, he was also crying in the bathroom or into his pillow and would get upset when he saw parents pushing a stroller on our walks or a car seat in a client’s car at work. Knowing that we were having similar experiences helped me to feel less lonely, but I still did not talk about her as much as I wanted to because I did not want to upset him, especially when I thought he was in a good place that day.  ​

Pregnancy After Loss  
Nick and I decided to try for another baby as soon as we could. The desire to bring a baby home was stronger than ever. Although I knew my life would never be the same and she could never be replaced, I thought that having another baby would be healing. We decided early on that we would only tell our parents and immediate family (siblings only) about the pregnancy and would announce it to everyone else once the baby was born. We did not want people to assume we were okay and had gotten over Zalayah’s death because we were having another baby. I also did not want people to view this baby as a replacement and I did not want to hear any hurtful comments (Example: Nick could not come to the ultrasounds during the pandemic, so we paid to have a gender reveal at a private clinic. Most ultrasound technicians would ask if this was my first baby and I would always respond “no, my first was stillborn, this is my second.” Stating my first was stillborn up front alleviated follow up questions like “how old is your first”, “boy or girl” etc. When this ultrasound technician asked, she immediately responded “well no, then this is your first” completely dismissing my daughter, that was the type of hurtful comment I was afraid of and why I wanted to keep the pregnancy a secret). 
​
I got pregnant in March 2020 but had a miscarriage within a few days of finding out. I then found out I was pregnant again on Mother’s Day in 2020. It was a great gift, and I was so relieved, but that was short lived. Fear and anxiety immediately set in and became my primary emotions until I gave birth to Ezrah on Christmas Eve. The article 15 Things Babyloss Parents Do When They Get Pregnant Again describes everything I did when I found out I was pregnant and the reasons why very accurately. The following quote from the site sums up the experience nicely “The journey of pregnancy after loss can feel like a long and lonely one, fraught with worry and tension.” ​

I did not realize how hard pregnancy would be while grieving the loss of my daughter. I cried, prayed, worried, counted the days, grieved, and cried some more. Because we decided not to tell many people, I hardly talked about my pregnancy with anyone other than my counselor. I did not download the apps this time, no social media announcement, no baby shower, no online birth clubs, no maternity shoot. I did not celebrate milestones, instead looked at every day as the day I could lose this baby too. I felt ashamed for how I felt. It was difficult for me to connect with my son as I always feared I would not bring him home. ​

How To Not Feel So Alone  
Being isolated in grief makes the journey even harder. COVID did not help in a lot of ways but it did help us to hide the pregnancy. Despite the isolation, I have grown over the months. I had to be the strongest person I have ever been to be able to get through each day and not allow it to completely cripple me. Finding a community of parents who had similar experiences is what helped me the most. I connected with other parents by participating in the 2020 Butterfly Run and the Loss Parents Greeting Card Exchange, and by attending the perinatal loss and the pregnancy after loss groups at Roger Neilson House (RNH). The run gave us a reason to talk about Zalayah with our friends and family while supporting RNH. Many people supported us and told us they often think of us and Zalayah but never knew what to say which is why they did not reach out. This was comforting for Nick and me.

​I reached out to mothers on loss forums and remained in contact with a mother whose daughter was born still exactly two months after Zalayah. Our rainbows were born within 7 weeks of each other. We were able to support each other throughout which was great.
 
Having this community of parents who are also on this difficult journey validated how I was feeling as many parents felt the same way. I also sought out a counselor who was compassionate, who could help me start the process of healing from the loss of Zalayah while pregnant. I looked forward to the nights that I could talk to my counselor about Zalayah and Ezrah with no filter. 
 
I taught my friends and family how I wanted to be treated. I told them I wanted to be considered a mom, I wanted to hear Zalayah’s name, I wanted to be acknowledged on her birthday and Mother's Day, I wanted her name on family holiday cards that were sent to us and I wanted to talk about her. I also shared the links below to let them know how they can approach me. Nick and I agreed to communicate more often, and I made the effort to share how I was feeling by using an analogy we learned from another couple in the perinatal loss group (We would ask each other how big the “grief ball” was that day. The larger it was, the more time we set aside to talk about it). 
 
30 women share the one thing that helped them most after a miscarriage (todaysparent.com) 
18 Supportive Things to Say to Someone Who Lost a Baby or Miscarried | Cake Blog (joincake.com) 
 
Unfortunately, grief and loneliness go hand and hand; however, connecting with a community of parents who have had similar experience and sharing your story can help alleviate that feeling of loneliness. ​

​The grave for my son, Martin, has no name plate, no birth date nor a loving message scrawled into the granite.  Honestly, only a few know where to go to find him and those few only know Martin is there because it's the same place they go to visit their babies. 

Martin is our second child.  He was born on April 2, 2018 at 19 weeks gestation.  His life was brief, only surviving for one short hour before his heartbeat faded away.  When Martin as born, we were living in Edmonton, Alberta and he is still there. I never thought that I would have to move away from him and it pains me that we’ve left him behind.  The cemetery he is buried in was only a 10 minute drive from our house.  It wasn’t necessarily the place I would go to connect with him, but I also never realized how comforting it was to know that he was close.  Now, we are 3 provinces and 3,500 kms away from him.  It’s been over a year since I was able to sit beside him and tell him stories of how much I miss him, or to drop off cards and crafts that our two surviving children have made for him. 

​But I wasn’t done there.  Though I wear my necklace often, and it truly does bring an extra connection to him, I still felt like I wasn’t finished.  I still had a desire for more.  I needed something more permanent. It took some time to plan and perfect, but this past summer I finally got my memorial tattoo for Martin.  I thought of no better way to keep him with me forever than to place my love for him right on my forearm.  Donned with the most delicate daises and sweet pea’s to represent his birth month flowers and his tiny little exact handprint tucked in amongst them, I am proud to wear my love for him on my body like a badge of honour.  I see it every day and smile as I trace his wee handprint with my fingers, imagining how incredible it would be to hold his tiny hand again.  As my appointment date neared, I really had no idea what kinds of emotions would bubble up.  In the past 2 years I’ve become quite well acquainted with big emotions showing up in seemingly random locations – grocery stores, concerts, on picturesque drives - so seeing as I was having a memorial tattoo done I was mentally prepared for anything.  In the past 2 years, I have also grown exponentially in my grief.  I have told Martin’s story hundreds of times and each time I tell it I feel stronger and am more able to share his life without emotionally breaking down.  On the day of my appointment, I told his story once again; this time while needles buzzed away in the background like white noise.  And I have perhaps never smiled with so such pride and purposefulness as I did that day.  Deep in my soul I knew that this tattoo was exactly what I needed to express my love for Martin in a way that was far more personal than a plaque in a faraway city.  No matter where we go he will always be with me.  He is part of our family’s story and his story is one I am proud to share.
 
Without a doubt we miss Martin every single day but he is always part of us, no matter the distance. His legacy didn’t end when his heart stopped beating.  It was just beginning.  Our kids are growing up with an angel brother, one who my now 4 year old daughter is proud to talk about and send kisses to way up in the stars.  She always notices when I wear my pearls and often copies me in tracing Martin’s handprint on my arm when we snuggle at night.  Our family of 5 is complete - complete with love, with sadness, and messy chapters - but even with all of the mess in between our story is beautifully ours.

We Were Gonna Have a Baby, but We Had an Angel Instead by Pat Schwiebert

We Were Gonna Have a Baby, but We Had an Angel Instead is a beautifully written story from the perspective of an older sibling at the time of their brother or sisters death during pregnancy.  It is very direct, just as you would expect from a young child and does a great job at acknowledging grief from a child’s view.  The book does a wonderful job at addressing that parents, grandparents and even kids all grieve too.  It is a great read to help siblings understand death, sadness and all of the emotions that surround loss. This book is a very helpful tool for families to read together and navigate their own feelings surrounding death and grief.

This is an excellent read.  I love how bluntly it was written.  I think people often believe that children don’t understand as much as they actually do, when really they don’t need the truth to be sugar coated all the time.  Learning about death is an inevitable life lesson and I believe that it is much easier to grasp at a young age rather than in adulthood for the first time.  I also loved how the author recognized the child’s grief and his sadness was an accepted and honoured emotion during his grieving process.

A global pandemic is probably not what anyone had in mind when they were envisioning 2020. For those in the loss community, the COVID-19 pandemic can be particularly difficult to navigate.

Physical distancing and self isolation can trigger feelings that we experienced after our loss. Often, the strategies we put in place to help with our loss are now not available to us. For example: visiting friends or family, seeing our social worker or councillor in person, being able to attend group bereavement meetings, even just the simple things like sitting in a coffee shop are now things we can not do.

But, what are some things that we can do to help make this a little easier?

During this time, you might need to talk to your social worker or therapist more often than before, and that is pretty understandable. Before the pandemic, I was seeing my social worker once a month and that was exactly what I needed. But when I was pushed into self isolation, I started talking to her once a week. I was then able to go down to once every two weeks. And now I reach out as I need it. This is perfectly okay, our lives have changed and needing help to navigate that change is normal.

Physical exercise! I know everyone says this, and I use to roll my eyes too. When I started seeing a social worker after the loss of my daughter, exercise was suggested to me as an outlet for some of the strong feelings I was having. And it helped. So in March when things began to shut down and I suddenly found myself working from home, I started going on daily walks. It varies daily, but I try and get 30 minutes of exercise most days. I’ll be honest, I don’t want to go for a walk everyday. There were some chilly days in April and May, but most days after my walk I feel a little better.

​Find a sleep routine that works for you. I know for me, when I struggle with sleep, I often start struggling with my grief. But there are some things that can help. A warm bath, lavender spray, reading, light stretching, yoga and meditation are all great options that can help you fall asleep and have a better sleep. Also: maintaining a consistent bedtime. In the first few weeks of being
home all day, I allowed my sleep and wake times to be all over the place, and that did not help. Having a consistent sleep routine has really helped and cut down on the number of nights I just lie in bed staring at the ceiling.

Many people find it very helpful to have a place to write their thoughts down, an outlet that allows them to write down all the thoughts they may not want to share with the world.
Journaling hasn’t been something that I have been able to get into but I have heard that having a place to write down those thoughts that you can’t seem to let go of can be very therapeutic. It is often suggested as part of a bedtime routine, or when you are trying to sleep but you are having repetitive thoughts, journaling maybe a helpful outlet.

Meditation is another practice that I have not had great success with, but I do live with someone who practices daily meditation. My husband meditates every day. It is for sure a skill that takes work but can have real benefits especially when dealing with stressful or high anxiety situations. There are many apps that you can download on your phone or videos that you can watch online that guide you through daily meditations.

As an extrovert, I have heavily relied on phone and video calls throughout the pandemic. I am also a bit of a planner so I like to set up “talking dates” with my friends so that I know when I am going to get to talk to them. Video calls especially give me a small sense of normalcy. Being able to see them really makes a difference. I like having more than one person I can talk to about my stress and anxiety so that I never feel like I’m overloading one person with all my problems. I also find it very helpful to get different people’s perspectives.

When I started writing this post I reached out to friends in my loss community about what they have been doing that has helped them. A suggestion that I love was to have a project (whether it be work or home). Staying busy can be a great way to channel some of that energy and having some distraction can give your mind a break. We all have that drawer or closet that has gotten out of control, maybe now is the time to organize it. Or that garden that you only half maintain.
(Wait is that just me?)
​
Hope these suggestions help you manage this difficult time.

Stay safe!

By Mike Wheeler, a sad dad​

Finally! The perspective of a straight, cis, white male!

Just kidding. This is not a men’s rights post, don’t worry. But it does feel strange for me to be sharing the point of view of a somewhat under-represented group of people: loss dads!

I’m lucky to be married to Leah, who you may know as the person who currently runs the Ottawa Butterfly Run social media accounts and who has also contributed to this blog. Last year, after many years of very exciting medical stuff, Leah became pregnant with our daughter Eliza. On August 15th, Eliza was stillborn at 29 weeks. As far as we know, her death was due to a cord accident.

In the days and weeks after Eliza was born, we received a tremendous amount of support both from The Ottawa Hospital and Roger Neilson House where we began to see our amazing social worker and attend group grief counselling. We were already incredibly lucky to have a strong support network from friends and family, but the we found that nobody really knows how to handle folks who have just lost a baby. We didn’t know how to handle ourselves. We’ll be forever grateful to the professionals at Roger Neilson House who have showed us tremendous guidance and support through our grief.

While we were still in the hospital, we learned about The Butterfly Run. I love to run, and Leah comes from a big running family (she is more of a walker herself) and it seemed like something toward which we could direct a little of our energy and do something productive while we were totally lost in our grief.

The event was great, and we were able to raise a little money to give back to the folks who were able to hold us up when we were at our lowest. Leah immediately decided she wanted to get involved in the next year’s run and volunteered to help out.

And I wrote this blog post!

Being a dad is hard, but so is writing about being a dad.

I keep writing, deleting, and re-writing this paragraph. I’ve been struggling to talk about my experience as a dad because I keep feeling like anything I say about it is going to come across as being in opposition to the experience of being a mom. Or even worse, I’m worried about minimizing the experience of others. When I start writing about how dads get sad too, my inner-critic chimes in and says “are you saying that you’re more sad than moms or just that you deserve more attention than you’re getting?” And obviously, this is not the attitude with which I want to portray sad dads.

I voiced these concerns to a wiser and much much much older dad, and he helped me realize that this is actually the perspective that I should be sharing.

So at the risk of sounding like a big whiny complainer, let’s fire up the BBQ, put on our favourite novelty apron, and get ready for my fatherly insecurities!

Sad dads and bummed mums.

Leah and I make an excellent team. She knows the depths of my grief and I know hers and that works out great. In the early days after coming home without Eliza, we found that we would tag-team feeling destroyed. It was incredibly fortunate that one of was usually okay enough to support the other.

I mention all of this because I have always felt like we’re deep in this together and we’re sharing one grief journey and the experience of becoming Eliza’s parents. Our paths aren’t always the same and our highs and lows can differ, but we’re a single parenting unit. But we don’t always get treated that way.

While in the hospital, Leah was offered appointments and consultations with the psychiatric unit to make sure her brain was in good working order. I didn’t receive the same offer. When we left the hospital, Leah began her 16 weeks of maternity leave. I got five bereavement days from my employer for the death of my child. (Don’t worry, I got my doctor to write me off on stress leave so that I could take care of Leah while she recovered from her c-section.)

I love to talk about our experience and to tell people about Eliza, and the first question out of everyone’s mouth when the hear about what happened is “how is your wife?” It’s an important question, and one that I am also very concerned about, but pretty frequently, the follow-up question, “how are you doing” never arrives.

Moms and dads: the same but different?

I think that this all comes from two places:

1. Nobody knows anything about how to handle folks who have experienced a stillbirth or infant loss because not a lot of people talk about it. From what I can tell, this is slowly changing, which is great. But I’ll be the first to admit that I had no idea about any of this stuff before it happened to us.
2. Most dudes still don’t like showing emotion even in the year two-thousand and twenty! The idea that talking about being sad will be perceived as a weakness is itself a terrible weakness. Leah has been able to find large online communities of loss-moms. It’s not quite the same out there for loss-dads.

I hope that didn’t all come across as too whiny or dramatic. As much as Leah and I are an elite parenting team, there’s no point in pretending that we’ve had the exact same experience. The first example that comes to mind is that I got to talk to Eliza and feel her moving around, but she wasn’t - you know - inside of my body. How this should impact people’s concern for our well-being, I’m honestly not sure.

I don’t have a fix for any of this, but I am going to be out here talking about this stuff, so maybe that will be a small nudge in the right direction.