This month, a couple of our community members have graciously agreed to share their stories. I believe that sharing one’s story helps others realize they are not alone on their journeys. It encourages discussions and enables community members to support each other in many ways during taxing times. Please visit their pages to read their stories in full.
The first is Lisa Andre’s journey. Lisa and Steven have been on a fertility journey since January 2019. She was told by doctors she has unexplained infertility. She has experienced two miscarriages, two chemical pregnancies (an early pregnancy loss that occurs shortly after implantation), two failed IUIs (intrauterine insemination), undergone an IVF (in vitro fertilization), egg retrieval and an embryo transfer. Her second embryo transfer was cancelled due to her lining not being at 7mm. Lisa felt her doctors were not doing enough to find the reasons why they were having these problems and decided to take charge and focus on the issues that led to the cancellation of her second embryo transfer. She sought out a naturopath and has been seeing some very positive changes and remains hopeful. Reading Lisa’s blog brought me to tears. The strength and courage she has to keep fighting and to advocate for herself is remarkable. Lisa is an unstoppable force and determined to make her dream of having a baby come true. I hope and pray with all my might that it happens. Please read her wonderful blog at the following link.
The second is Dawn Xiao’s journey. Dawn and Chris have a beautiful daughter named Fiona who they welcomed through surrogacy. Dawn was born with an underdeveloped uterus which resulted in her not having any menstrual cycles. This meant that the couple would need help from someone who was willing to carry their precious baby for them. Dawn and Chris created their embryos in 2016 and a friend agreed to carry their first baby for them. Their friend who carried their first baby, Fiona, has since retired from surrogacy. Dawn and Chris would like to give Fiona a sibling and are currently searching for someone to help them complete their family. Reading Dawn’s story warmed my heart. Dawn and Chris are an incredible couple and I wish for them to find the perfect surrogate who will make their dream come true and help grow their family. Please visit Dawn’s Facebook page to read her full story.
It is difficult to know what someone is/has going/gone through or what journey they are facing when viewing their life from the outside. I realized that many everyday questions such as “when are you going to have kids”, “when are you going to give your child a sibling” and “how many kids do you have” can be triggering and extremely painful for many people. I think it is important to support each other and to be mindful of comments and questions that may be hurtful.
I found the following resources very helpful and have used them to educate myself on how to approach people within our community, especially those struggling with infertility. Being educated encourages healthy dialogue and ensures we are not hurting those we know and love who are going through this difficult struggle.
27 Things People Struggling With Infertility Want You To Know | HuffPost Life
What to Say (and Not to Say) to Someone Living with Infertility (resolve.org)
When I think about grief and what it means to me…it is difficult for me to put it into words. I honestly wish it meant nothing to me and that I was not grieving my daughter’s death. If I had to put it into words, I would say grief is depressing, miserable, unfair, lonely, isolating, exhausting, full of regret, intense, painful, and confusing.
Some words that other members of the Butterfly Run Ottawa Community Support group have used to define how grief feels / what grief means to them are:
At this point, I will share some quotes that I like that I feel will explain what grief means to me better than I can put into words. I have saved all of these quotes and read them often when I am feeling down and lost.
What I have learned in the last year is no one can tell me how to grieve or what grief should look like. There is no right answer because every journey is unique. I know that I will be on this journey forever and that is okay.
The need to have a baby in my arms after my daughter died was very strong. I feared having empty arms on her first birthday. I honestly do not know what I feared but I just thought it would be extremely difficult. I also wanted to prove to myself that I could have a healthy baby. That I was not broken and a failure. I wanted to know that my body was capable birthing life and not just death. Being pregnant with my rainbow baby while grieving my angel baby was extremely difficult. The pregnancy that resulted in a live birth was my third. The first ended in a stillbirth and the second in a very early miscarriage. I felt like the universe was trying to tell me there is no safe zone and that I could lose Ezrah at any moment in time. The entire pregnancy, I was living in my head. My thoughts consumed my life for those 36 weeks and I barely remember what was going on around me.
Finding Out – First Trimester
When I found out I was pregnant again, it was on Mother’s Day in 2020. In that moment I was excited. It was my third chance. I kept saying to myself that it would not happen again. Life cannot possibly be that cruel. I immediately ordered a doppler online and we decided we would only tell our parents and siblings after the first few ultrasounds. I experienced spotting a few times in the first trimester and cried uncontrollably every single time. I thought for sure I had lost my son too and at 7 weeks into the pregnancy, I was already emotionally and physically exhausted. I found his heartbeat using the doppler at 9 weeks after hours of trying. Using the doppler then became an obsession. Due to the pandemic, I was working from home. Anytime I felt anxiety I would use the doppler to find his heartbeat to reassure myself. I continued to take pregnancy tests and was taking my temperature daily since it is higher than usual during pregnancy and a sudden dip could indicate a miscarriage. I decided early on that I would be induced as early as possible (37 weeks) as I was scared to get to the same point in my pregnancy that I did with Zalayah. Those first three months I just remember being stressed about the unknown and was in complete survival mode. I had a hard time connecting with this new baby. I had convinced myself that if I did not connect with the baby and he did not make it then it would somehow hurt much less.
The second trimester, all I remember is being told this baby was my first baby by an ultrasound technician at a private clinic (basically implying my stillborn daughter did not “count”) and finding out this baby was a boy and not another girl. Being told this baby was my first, after telling her our first was stillborn, was like being punched in the face. My biggest fear is that people will forget about Zalayah or they would dismiss her existence because we were having another baby. It made me angry that a stranger could be so cruel. Moments after that comment, she revealed we were having a boy. I thought because of how unprofessional she was that she just did not know what she was doing and waited for my anatomy scan for confirmation. In the first trimester I was nauseous, tired, emotional and I FELT like I was having a girl, which to me was like a second chance in some way. At first, I just wanted a healthy baby but then started to feel so guilty and upset that the sex of the baby mattered to me. I convinced myself that she had to be wrong. But she was not. They confirmed that the baby was a boy at the anatomy scan. I felt like I lost my daughter all over again to a certain extent. My counselor told me I was experiencing “gender disappointment”. It made it more difficult to connect with my son. I did not want to clean out her room, I did not want to pack away all her little dresses and frilly outfits. I felt like a failure, like I would never give birth to a healthy baby girl. I lost my chance. This made the second trimester very difficult for me and it's when I decided to seek out professional help to get through the remainder of my pregnancy.
As I approached my due date, I knew I had to get ready for Ezrah’s arrival. It took a lot for me to start buying boy clothes and other things for him. I did not want to return to a house full of baby girl AND baby boy stuff and no babies. I was still disappointed about the gender and had a hard time connecting; but when we finally chose a name for him, I felt the bond growing stronger. My husband made a long list of names and when he said the name Ezrah, I knew that would be his name. Little did I know it means “helper” which was very fitting. As I approached 37 weeks, I became more anxious. I made sure my doctor was aware that I wanted to be induced at exactly 37 weeks, not a day later. The countdown was brutal and even more stressful than the other trimesters. I had bi-weekly appointments with an MFM OB which helped a lot. My induction date was moved up to December 26th from December 28th and I was so happy my waiting time was cut short! Ezrah had other plans though and was born on December 24th. Although he was early, he was perfectly healthy. The pregnancy seemed to go by so slowly and so quickly at the same time.
After Zalayah’s death, being pregnant again was one of the most difficult things I have been through but when I look at my son, I know it was worth every difficult day. All the fear and anxiety about the pregnancy, about wanting a girl, everything melted away when I heard him cry for the first time. I am so grateful for my son. Yes, I am still grieving, and I still miss my daughter. No, my son is not a replacement for her.
Be kind to yourself if you are on this journey and try to remember…
If you are in need of support, please check out the Pregnancy After Loss Support Group at Roger Neilson House.
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.
Immediately after leaving the hospital without my baby, I felt lonely in the sense that I missed my daughter. I carried her for 9 months and knew that she was with me no matter what I did and where I went. It brought me comfort knowing that I wasn’t alone. Early in my pregnancy, I had extreme nausea and felt like she was reminding me that she was there, and she was okay. Once the nausea had ended, before I could feel her movements, my baby bump started to grow and the cravings for certain foods had increased. I wondered if the foods I craved would be her favourite when she started eating solids. My body was changing every day and it was growing with my baby. I imagined how my future would be with her. I played music for her, sang to her, and spoke to her every day and then just like that, she was gone.
Friends, Family and Grief
During my pregnancy, I felt like everyone wanted to be around me. Friends, family, and colleagues would want to touch my growing belly. They would ask me how I was doing on a regular basis, wondering when my next ultrasound was, what her nursery would look like, what I needed for her and if they could help in any way. Those who were already parents were giving us advice, telling us what we needed and did not need, what to expect during labour and delivery and how life would change when we brought her home. We were all oblivious to the fact that she may not come home.
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.
Medical Professionals and Grief
As someone who has experienced depression, I knew the isolation would only make things worse for me, so I sought out help from professionals. Although the sessions were limited to an hour, I looked at it as an opportunity for me to talk freely and openly about Zalayah without judgment. While most of them were extremely helpful, a few seemed to dismiss the fact that I had lost a baby. One psychologist expected me to be in a “better place” than I was 3 weeks after Zalayah was born. The lack of understanding and compassion from this healthcare professional pushed me further into the depths of loneliness. I felt like I could no longer be honest about how terrible I was feeling at the time. I also felt like my feelings were not valid and I should have gotten over the loss by then. The next session, I lied about being in a better place to match her expectations and I was discharged.
Gender Differences and Grief
My husband and I became stronger immediately after the loss of our first born, Zalayah. I was an emotional wreck and he was my support system. He was the only other person in my life who truly knew how I was feeling. He understood when I started crying out of nowhere, he listened in agreement when I rambled on about how unfair life is and when I questioned why us. He reassured me and stopped me from blaming myself for her death. Looking back, I realize, he put aside his own emotions to make sure I was okay.
Over time I started to realize I was always talking about our daughter. I felt like I was the only one who was always crying, always trying to find an answer as to why it happened. He attended the first few counseling sessions but after a while, I was attending them on my own. I started to resent him and then started to feel guilty for how I felt. I did not want to bring him down by telling him how hard my day was or how much I had cried because I felt like he was in a better place than I was. Again, I started to feel very isolated in my own grief. I would only cry in the bathroom or into my pillow, I stopped expressing how I felt and once again turned to the internet for validation. I learned that there are known/studied differences in how men and women grieve.
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.
Martin was buried with the help of a local hospital burial program offered to bereaved parents at no charge. He is buried in his own tiny box in a grave with multiple other babies who were born around the same time. The program gave my husband, Luc, and I comfort knowing that Martin would never be alone. He is forever surrounded by his angel friends, including J, the son of a dear friend of mine, who passed one month later. Knowing that our boys are forever side by side provides both of our families so much comfort on dark days. The grave has a large marker placed on top that reads, “If pennies were teardrops, and heartaches were gold…”. Families are then welcome to purchase a small plaque to have placed on the monument that reads their child’s name, birth date and a short message. While we looked into it, the cost was far more than we wished to spend seeing as his cemetery plot wasn’t a place we frequented and nobody else in our family had ever gone to visit him. We had other plans for ways to honour and remember him so we decided to not mark his grave, a decision I am happy with now especially since we don’t live there anymore. Plus, I wanted something more meaningful than a plaque, something that would always be with me, something that would allow me to tell his story and speak his name more often.
I had so many big ideas and nothing was going to stop me from proudly displaying my love for Martin and for advocating for my son, ensuring he is never forgotten and always with us.
So, before leaving the hospital after Martin died, we asked our nurse to save us a piece of Martin’s umbilical cord. I knew I wanted to make a memorial piece for him. I don’t ever get to keep his first lock of hair, a lost tooth, watch him take his first steps or grow up into a man. This was all I got to keep from my sweet son and I knew exactly how I would make this small shared piece of him and I into one of the most irreplaceable and invaluable items I would ever own.
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.
By: Haylee Robert
The Invisible String by Patrice Karst
The invisible String is a good read for young children to begin to understand the connection between themselves and the people they love, no matter who or where they are. In the story, a mother is explaining to her children that we all have an invisible string that connects our hearts to everybody we love, whether they are across the world, under water, in outer space or even in heaven. When we feel love for somebody we are connected to it tugs on the string and they feel it in their heart. The story concludes that no matter what, we are all connected.
Though the book doesn’t directly relate to infant loss or death in much detail at all, it is a great way to help young children understand the invisible bond that is always there between the people we love. The story is simple and opens plenty of space for dialogue to happen while reading together. The illustrations are adorable and there are hidden hearts to find on each page.
I love this book – it’s simple and easy for young kids to understand. We started reading this book with our daughter when she first started asking more questions about her brother. It seemed to satisfy her need for explanations and she now often can be found tugging her imaginary heart string when we are talking about him.
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.
Ethan’s Butterflies by Christine Jonas-Simpson
Ethan’s Butterflies is a heartwarming story told by Emma, an elephant and big sister to Ethan, who died in Momma’s tummy. Emma is sad and confused and has many questions surrounding her brother’s death. With the help of her parents, she learns that even though Ethan isn’t still on earth that his spirit lives on forever and they will always be together.
This is a great book for young children to begin to understand death, mourning and spirituality. Carefully side stepping religion, it recognizes the mix of emotions that children have surrounding grief and loss. Emma doesn’t understand many of the common traditions held after a death, like caskets and funerals. The book navigates the rollercoaster of emotions that a young child may experience when they don’t fully understand what’s happening around them or why.
This is one of our favourite books to read with our young family about grief. It is a heartwarming story that has helped our daughter understand more about her brother’s death, from sadness to finding signs that he is with us when we think of him. It has been a great tool for guiding our children through the process of grieving as time passes.
Haylee Robert, Outreach Director for the run, is a proud mother to 3 children, Amélie, Martin and Théodore. Her son Martin was born at 19 weeks after nearly a month of unexplainable prenatal complications. Too young to survive but born a fighter, he lived for an hour before his heart beat faded away. New to the Ottawa area from Alberta, Haylee is grateful to have found a circle of understanding peers in a new city. She is excited to team up with the Butterfly Run and share her passion for infant loss advocacy and outreach with the Ottawa community.
By: Leah Day
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.
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:
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.
Along with his partner, Leah, Mike hosts a podcast called Baby Quest that is about exactly this kind of stuff. He can also be found on Twitter @TheMikeWheeler, even though it’s not good for his mental health to be on there.
Leah, a mom for The Butterfly Run Community, has put together a thoughtful post about coping with the upcoming Holiday season. We thank her for the time and energy she to put into it.
The holidays are always tricky, but they become even more difficult when you are experiencing infertility or pregnancy and infant loss. The time of year that is supposed to bring joy and happiness often leaves those who are suffering feeling alone and thinking of what could have been.
This year, after my daughter Eliza was stillborn in August, I’ve been dreading Christmas. Standing in the aisle at Canadian Tire looking a decorations brought me to tears one day. So I reached out to other parents who have walked this journey to asking for advice.
How do you cope with the holidays?
Overwhelmingly, everyone said to be kind and gentle with yourself and on that day do whatever you need. If you wake up the day of the party and you just don’t feel you can handle it, give yourself permission to cancel and not go. You may want to tell the hosts that you won’t be coming, or warn them when you RSVP that there is always a chance you might not feel up to it that day.
Other people interpret the idea of doing what they need as skipping the big holiday dinner all together. (Honestly, some days this doesn’t sound like a bad idea to me.) I had a few people tell me they left the city, and went on vacation.
Another great piece of advice is if you do decide to brave the holiday functions have an escape plan. For us, that means warning the hosts beforehand that you might need to leave unexpectedly. I’ve heard from others to have a “safe word” with your partner that tells them it’s time to leave.
I also received lots of ideas from parents about how they include the child they lost in their holiday traditions. For some, that means having the child’s name included on cards. Another idea is having an ornament for the tree, which is something we have done for ourselves and also close family members. One mum told me how she has an ‘Angel Tree’ for her daughter and as they find or are given new ornaments, they add them to the tree. I thought this was such special way to include her daughter at Christmastime.
The last, and probably the suggestion that felt most impactful to me, was the idea of donating a toy to a local charity appropriate to the child’s age. This year, we will be donating something for an infant. I loved this idea so much because it is very actionable and it makes me feel like a parent. I’m hoping this will be a tradition we can carry on for years to come.
I have no doubt this Christmas is going to be difficult, but hopefully I can take some of this great advice and make it a little easier. I hope whatever your journey is, you have a happy and safe holiday season and that the New Year brings you lots of joy.
Did you know that 100% of funds raised from Charlotte & Théo’s Butterfly Run Ottawa/Gatineau go to Roger Neilson House?
That means that 100% from every cent raised through your registrations and fundraising efforts supports palliative care and bereavement programs at Roger Neilson House. We at The Butterfly Run do not take a single cent of these funds. Instead, we rely on sponsorships and our separate fundraising initiatives (ex. the Silent Auction) to cover the overhead costs of the Run, because we want to ensure that all of your personal registrations and fundraising efforts go directly back to supporting those in our community!
Why do we choose to support Roger Neilson House?
For starters, Roger Neilson House offers palliative care and bereavement programs for parents, grandparents, and siblings who lose a pregnancy after 20 weeks of gestation, a child at birth, or within a year after birth.
Secondly, Roger Neilson House has provided a huge amount of support to our community and many of our Committee members would like to share what this support meant to their families.
“We had never heard of Roger Neilson House. After receiving Charlotte's terminal diagnosis, we met with the Palliative Care Team from RNH to make the best medical decisions for Charlotte. Luckily for us, Charlotte defied the odds and managed to breath on her own. After making it through the night at the NICU we moved to RNH. Expecting to only stay for a matter of hours or a day, we were blessed to live there with Charlotte for 37 days. We were able to live like a family while Charlotte received the medical attention she needed.
During our stay at Roger Neilson House we lived as much as we could, we had late night walks, showers, story time, mommy and me yoga, wished on a shooting star and watched movies. We celebrated Thanksgiving, Charlotte’s 1 month birthday and Halloween, where she got to dress up, decorate a pumpkin and go through a haunted house.
Roger Neilson House will always be Charlotte's home. She now has a star there to mark her place in the house. We are so thankful for our time at RNH, as well as everything they have done for us since. I attended the Perinatal Loss Bereavement Group, received one on one counselling and have recently started going to the Pregnancy After Loss Support Group.
I am honoured to be co-chairing Charlotte and Théo's Butterfly Run, in Charlotte's memory. Knowing every dollar raised goes to RNH and the wonderful programs and supports they offer families in the most difficult times.”
Anne-Marie Warren, Charlotte’s mom and Co-Chair of Charlotte & Théo’s Butterfly Run Ottawa/Gatineau
“Roger Nielson house is so much more than a care facility. What they offer is so much more than programming and support. They give hope. They give community and they create legacy.
After our son Théo passed away unexpectedly on October 26, 2017, at only 8 hours old, we were forced to return to our home with empty arms. We were left feeling alone to put back the pieces of our broken hearts and dreams. The loss of our son was devastating. We didn’t know how to move forward in this new reality of life as bereaved parents. Thankfully, a few days later we were put in contact with Carol, a social worker from RNH. Carol made sure we were well supported. She told us about all the different services they provide. We were enrolled in a perinatal loss group, as well as counselling as a couple and independently.
It was in the group where I met my Sisters In Loss, four other women in similar situations to mine who are also on this journey as newly bereaved families. This community has transformed my experience and I have RNH to thank for this.
I can’t imagine this journey without the comfort that Roger Nielson House has provided us. I’ve learned that my grief comes from a place of pure love for my son. I’ve found a place for all that love to go now. It is my hope that through Théo’s Butterfly Run this year, his legacy can be making this support more widely available and accessible.”
Claire Pagé, Théo’s mom and Co-Chair of Charlotte & Théo’s Butterfly Run Ottawa/Gatineau
“We lost our our son Carter at 38 weeks to an unexplainable stillbirth. When we started our search for grief support there was only one place that recognized our situation and offered us support and that was RNH. We received family counselling, one on one support and were matched with another bereaved family so we could connect with people who truly understood what we were going through. Carol and her team also provided support during our rainbow pregnancy as that journey (although different) was equally as hard emotionally as our loss journey. I became involved with the Butterfly Run as I knew that every penny raised from the race registrations would go directly back to the team that helped our family heal.”
Julia Winslow, Carter’s mom and Run Director for Charlotte & Théo’s Butterfly Run Ottawa/Gatineau
“Roger Neilson House proved to be lifeline in a hopeless situation when my husband and I learned that our son would be born with a severe heart defect. We had made the plan to palliate our son Lachlan, and the doctors and counsellors at Roger Neilson House helped us in this difficult time. Through counselling I prepared for Lachlan's birth and what his short life would look like.
As it turns out, Lachlan would die on the very day he was scheduled to be born. He was born at 38 weeks stillborn. The Roger Neilson House staff continued to provide support to us - arranging a photographer, and doing hand and feet casts for Lachlan and his big sister and brother.
In the months following Lachlan's death my husband and I received both individual counselling for our grief and began attending a group bereavement group at Roger Neilson House. Our 5 year old son Lucas also attends the sibling bereavement group offered, and he loves going and getting to talk about his little brother.
I don't know where we would be without the support and guidance everyone at Roger Neilson House has provided us.”
Emily Cordonier, Lachlan’s mom and Media Director for Charlotte & Théo’s Butterfly Run Ottawa/Gatineau
“We unexpectedly lost our son Trevor at 35 weeks after going into labour and arriving at the hospital to find no heartbeat. Upon delivering the placenta the cause of the Trevor's loss became quite apparent, I had had what is called a silent placental abruption. The doctor told us there was a blood clot almost the size of the placenta and if it had reputed, I very likely would have died as well. In the weeks that followed Trevor's loss I had completely shut down and wasn't functioning. I don't recall much of it or how we were connected but I was put in contact with RNH. At the time a perinatal loss bereavement session was running and Carole told me I could join even though it had started already.
I joined. I met other Moms and a couple who had experienced stillbirth and for the first time I wasn't alone. Yes I had my husband but his way of dealing was to bury himself in work after the funeral.
The weekly sessions continued and I began to open up about Trevor and we talked about how our baby's are still part of our families and ways to honour them and include them. I slowly began to heal. After our session was over my husband who wasn't able to attend the bereavement session and I were able to see a social worker together as a couple. We didn't know how to talk to each about Trevor and I was starting to notice the strain this was putting on our marriage. Our social work was absolutely amazing she helped us is so many ways and ways we didn't even know we needed help.
A star ceremony was held, and a star for Trevor was added to the wall. Every Christmas we go now for the tree ceremony and our two girls, one our rainbow baby and one the big sister make decorations for the tree and then get to place them on the tree.
Even now I will periodically email back and forth with our social worker or I pop in to see Trevor's star on the wall. I hope our oldest will be able to attend the sibling program when she is a little bigger. She is starting to talk about Trevor a lot even though she was only 13 months old when he was born.
RNH has become such an important place in our families lives. I support them and the Butterfly Run so that no family experiencing loss has to be alone and has access to such an amazing resource and community.”
Sarah Dykstra, Trevor’s mom and Fundraising Director for Charlotte & Théo’s Butterfly Run Ottawa/Gatineau
Thank you for supporting Charlotte & Théo’s Butterfly Run. It is our hope that through fundraising and awareness building, we can better support individuals and families who experience miscarriage, the loss of a child, or infertility.