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a home away from home

10/3/2021

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Throughout the month of October, we'll be hearing from various community members about how the Butterfly Run has impacted them. The first is from Carol Openshaw, MSW RSW, a palliative care paediatric social worker at Roger Neilson House.
​When I first began working at RNH ten years ago, I was told “we are a home away from home”. When I think of home, just some of the words that come to my mind are:
  • Love and comfort
  • Acceptance and nurturing
  • Fostering innovation and growth in those we love
  • community and encouragement
Sure, sure… but this is just a job right? How can a workplace be like home? Well, as I reflect on those ten years, those words have resonated especially throughout the past seven of which I have spent developing and growing the perinatal hospice and bereavement program alongside my teammates, most notably Lesley Sabourin, Perinatal Hospice Coordinator.

Since opening, RNH has always offered bereavement support for families experiencing perinatal loss- but the only way families found out about our program is if they happened to cross our paths, and generally if their baby was born alive and then died. These parents attended the same parent group and counselling program as families who had lost 18 year olds. Inevitably I would hear from our perinatal families “I didn’t know my baby that long- I don’t feel like I should be here- after all, those families are grieving a lifetime of memories” (interestingly, the families of older children would say to me “I can’t imagine the pain these families feel after losing a baby-thank god I had 18 years!”).

I believed we could do better by our perinatal community, so I approached my director Megan
Wright. I asked- can I please do some research in this area and create a perinatal loss support
group? We can try it out and see how it goes? My request was met with a resounding “YES! What do you need from us?” because families foster innovation and growth, and RNH is a home away from home.
I was afforded dedicated time to research the needs of parents who had lost babies, created a program model, and ran two back to back trial groups….and the rest is history. Since its inception, there has only been one season early on where a group was not run due to lack of parents. A season is 3 months. In 7 years, only one season had no group. In 7 years, we have in some months run concurrent groups due to high demand. And counselling, counselling, counselling!

Early in this journey I met Julia. Julia was my first parent who had lost a full term baby in stillbirth and reached out herself for support- she happened to hear about RNH from a friend who worked at CHEO and knew we were trying to grow this area. But stillbirth? This was new for me. I connected with my management- “Can I include the stillbirth population on my caseload? My research shows these parents need support and are experiencing significant grief”… the answer? “Of course! Let us know what you need!” …because families honour community, and RNH is a home away from home.

Julia shared with me the devastating story of losing her first son Carter at 38 weeks- imagine
reaching the finish line and then having your world collapse, after you did everything right.
Julia left the hospital with a suicide prevention pamphlet and the message that a “social worker
will call you”. Julia and I spent months establishing her new role as a mom doing the hardest parenting job of them all-parenting her baby in grief.

Then Julia discovered the Butterfly Run- in her words, “I found my people”. She became determined that no parent should ever live her experience of a pamphlet in hand, and that all families who need community should have access to it.

What has the Butterfly run accomplished? Crucial funding to continue to allow RNH to grow and develop our perinatal program. My role is now almost entirely dedicated to perinatal bereavement, to ensure I have the bandwidth to take on as many families that I can. We have expanded our program to include the families who have lost a baby through medical termination/early induction following a palliative diagnosis.
We have for three years been facilitating a Pregnancy After Loss Support group, to ensure that families are well supported in the next journey in their lives- because families provide comfort and nurturing… and RNH is a home away from home.

Thank you Butterfly Run for an incredible 5 years. I have attended every run, and am the proud
captain for the second year in a row of the RNH East Enders team! Because families are all about
encouragement, and RNH is a home away from home :)
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Grieving your old life

9/3/2021

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I read a post a few months ago titled Who Was I Before This Grief? written by a Still Standing Magazine contributor, Lindsay Henke, and I felt everything she was saying. She writes about being two different people before and after the death of her daughter.
She recognizes the person she sees in the mirror as her old self, but she doesn’t feel like that person anymore. She feels as if two people are inhabiting her body, her “old self”, prior to her daughter’s passing and her “new self”. She paints a very vivid and heartbreaking picture of her “new self” asking her “old self” if she will ever come home, to which her “old self” replies “no, not this time.” After reading that line, I cried so much that I was barely able to finish the post. I, like Lindsay, miss who I used to be before I experienced stillbirth. Today, I am not only grieving my daughter’s death but also grieving my old life. A life where I didn’t know that babies died in the womb. A life where I was carefree and not triggered by certain questions, posts on social media, or scenes in movies. A life when I was genuinely happy for those who announced their pregnancy, not filled with anxiety for them. I wish I still naively believed that a pregnancy means always bringing a baby home. I wish I didn’t get jealous of every mother who has a baby girl or envious of pregnant women fully enjoying their pregnancies, announcing their pregnancies, and buying stuff for the baby in the first trimester, certain they will meet their baby in the coming months. I miss people around me treating me like a normal person. I miss how much I used to laugh and how happy I was on a regular basis.

The pain, the sadness, the grief, and the misery that I feel now is my new normal and I wish it wasn't. I too, have an “old me” and a “new me” and as the post says, the “new me” carries all the memories of my daughter. Without her, I wouldn’t be who I am now. I try to tell myself that I will be okay eventually and that although I miss the old me, there is no going back to who I was before my daughter died and I am where I am meant to be today.
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I hope that this article helps you find a little bit of peace as it did for me.
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today is national rainbow baby day

8/22/2021

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Before I begin, I want to preface that I know this post may not be for everyone. I also know it may be important and informative to others (myself included!) to learn more about this national day, what it means to others and how my rainbow baby has impacted my grief journey. 
I had not heard about the term “rainbow baby” until after my daughter was stillborn. A rainbow baby is a baby born after a loss. Therefore my son, who was born 1 year and 8 days later, is considered a rainbow baby. The pregnancy for my son was extremely difficult emotionally. During much of it, I worried constantly about every little thing and took all of them as signs my son wouldn't be coming home. I became so detached from my son that a counselor asked me if I was willing to give him up for adoption because he deserved to be loved. Wow, that shocked me. I couldn’t help the way I was feeling, I knew deep down it was my way of protecting myself from the devastation of another loss (or at least I thought it was!. But I also knew that I loved him and even though I felt this way now, I knew as soon as he was here and I heard him cry that the bond would be formed and, thankfully, I was right. My life changed in a very beautiful and positive way when my son was born on Christmas Eve in 2020.  His smiles, laughs, and even his cries bring joy to my life every day. He truly is my rainbow after a storm.

I have to admit, though, there are times when I feel overwhelmed taking care of him. These feelings quickly turn into guilt because I feel like I should love every single moment with him, even the difficult ones. I always tell myself that I would rather be going through these moments with him than not having him. I prayed and prayed for him to be healthy and for us to take him home so I shouldn’t complain about things such as being sleep deprived. Honestly, I have struggled with this a lot.

I am extremely overprotective of my son, even with my husband. I am very cautious with him and spent the first few months of his life constantly making sure he was breathing and checking his temperature. Although I don’t do it as often now, I still catch myself staring at his chest while he sleeps, making sure I see it rise and fall. I am also scared to leave him alone with anyone. What if they feed him and he chokes to death? What if they drop him? What if they give him a bath and he drowns? I am always terrified every moment will be my last moment with him.  These fears may seem irrational to a lot of people, but to me, someone who has experienced a baby’s death, it is the first place my mind goes. I really wish it didn’t.

On top of worrying about my son, I am still grieving my daughter’s death, which is extremely difficult. Sometimes I can’t help but wonder if he would be here if Zalayah were still alive. I would have been on maternity leave with her, and I would not have been planning a second baby so soon. Although my son is alive and well, I still cry for my daughter. I still go through her clothes and hold them close to me while sobbing. I still talk to her. I still buy her things. I still wish she was here. I still picture how she would be at 20 months old. I still miss her deeply. Just because my son is here, does not mean that my pain is gone, or that I am no longer grieving my daughter.

For me, I am thankful that having my son after my daughter’s death has helped me in my healing, but it doesn’t take away the pain and sadness of losing her. Although my son has given me purpose and has reignited my will to live, parenting a rainbow baby is not easy. I know that I wouldn’t be as worried, anxious, or stressed with my son if my daughter was here with us. My mind wouldn’t immediately go to dark places. I’d still have my innocence and would be more trusting. I often envy those who haven’t experienced a loss. Their lack of experience and their blissful ignorance is something I wish I still had.

Here are some other things that parents wish people knew about rainbow babies (please see IG @pregnancyafterlosssupport for more comments). 

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'They are not replacement babies.'
'It doesn’t mean you forgot about the ones you lost'.
'S
ometimes they never come. Not everyone gets their rainbow'.
'Sometimes, being pregnant with a rainbow brings more worry than joy, and those feelings are valid.'
'It’s okay if you
 don’t immediately connect with your rainbow baby. I spent 9 months holding my breath.' 'When she was finally in my arms, I didn’t feel an immediate rush of love. All I felt was relief. That deep unconditional love came later and that’s okay.'
'They aren’t a “cure all” for the grief of the previous baby/babies lost and they are not a replacement, they come with a lot of anxiety and worry.'
'It is hard to relax when you are pregnant [with a rainbow baby]. Every little thing freaks you out and there is legitimately no relief until you heard that first little cry.'
'Sometimes rainbow babies die too.'
'You’ll never stop wondering how similar your angel baby would have been.'
'The innocence of celebrating pregnancy disappears.'
'
It hurts to be asked if this is your first when you know they have an older sibling that was born sleeping.'
'I wish people knew that a mother’s anxiety of losing her rainbow baby is very real. It lasts a lifetime. I’m forever worried and overprotective of my rainbow baby.'
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Dealing with negative family

7/31/2021

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After my daughter died, what shocked me the most was how negative some of my family members were. Some of them said hurtful things, even though they did not have bad intentions, the comments did not help me in my grief.
Others said nothing at all and removed themselves from my life which was more hurtful than the comments. And some would not acknowledge my baby and did not view me as a mother. Looking back, I wish I were prepared for how to handle the negativity from family members, particularly, the negative and hurtful comments. 

The first thing I will say is to be prepared for those comments. It is very likely that it will happen. Most people just do not know what to say to or how to act around someone who loses a baby. Some things that I have been told are: 

“You’re young, you can have more children.”
I realize that some people just do not get that although yes, I may be able to have another baby, it doesn’t erase the fact that I wanted my daughter and that I will grieve her death forever. Further, pregnancy after loss isn’t an easy and blissful experience. It is excruciatingly difficult and stressful. 

“It did not just happen to you; it happens to a lot of people.”
What happened to me is not common and even if it was, it does not take away the fact that my daughter is dead, I am upset about it and always will be. 

 “It was not meant to be.”
This is hurtful because it just dismisses my pain.  

“God doesn’t make mistakes.” 
Again, this just dismisses my grief 

“It was God’s plan.” 
Hearing this has never made me feel better at all, in fact it makes me feel worse and raises more questions like why us?

“Well, you should have known to go to the hospital earlier.” 
This one really hurt me. This was my first pregnancy. I voiced my concerns to my midwife and was always told “it’s normal”. So, no I did not know.
 

“At least you know you can get pregnant.”
My end goal in getting pregnant was to have a baby and to bring that baby home….this, once again, just dismisses my pain. 

What I have learned from this is people say stupid things and sometimes it is not to hurt us, they just do not know what to say so it is best to be prepared for it. 

To help mitigate some of the negative comments, I decided to educate my family members by informing them about stillbirth and the statistics around it. I discussed my emotions and feelings to normalize it and explained how I wanted to be treated and what I wanted to be told. Most family members embraced what I was saying, while others were very persistent in telling me that I should be over it and move on. If educating did not work, I would move to ignoring the negative remarks and would sometimes avoid people who did not get it. Prior to my daughter’s death, I was a people pleaser. I would keep people around and help them even if they were toxic in my life. I did this because I did not want to hurt their feelings. After Zalayah’s death, I purged those toxic people from my life. I had enough going on and I realized for once in my life, I needed to put myself first. My mantra became if they did not care about Zalayah and my feelings then they were simply not worth having in my life, especially during such a difficult and fragile time. For me to heal, I needed people who were on my side, who listened to what I needed and allowed me to speak openly about my daughter. 

As my inner circle began to shrink, I realized how important it was to find support from other people who understood my pain. Finding support within the loss community has helped me remarkably since they just get it. They are more aware of hurtful and negative comments and will support me no matter what. If you are feeling let down by your family, reach out to our community, chances are, you are not alone.


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art is helping me heal

7/18/2021

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In January of 2021, my baby was born prematurely at 23 weeks and unfortunately, he passed away. The dedicated care I received while at the Ottawa General was incredible. I was also introduced to the Roger Neilson House by a social worker while I was there, and that is how my husband and I joined their bereavement support program, which has helped us immensely. 
​My assigned nurse from the birthing unit even hand crafted a few keepsakes for us to bring home, which included a beautiful poster with a lovely butterfly sticker, a blue monarch. On my way home, I could not stop looking at that sticker, which led me to research the meaning of the butterfly and found that it symbolizes rebirth, souls of departed loved ones, and the fragility of life because of its short life span. 

As an artist, it felt natural for me to create art in order to process all my emotions. A few days after my return home, I sat down and painted the same blue monarch. While painting this butterfly, my mind was calm, and I somehow still felt close to my baby. This feeling inspired me to make it a daily practice. I set 100 days because the last week of my 100 days would also coincide with my baby's original due date. I called it The Ajisai Project, Ajisai being my artist name. The ajisai is a beautiful Japanese hydrangea that changes colour depending on its soil. I have some in my garden (planted recently) and it's also the name of one of my favourite inks (Pilot's iroshizuku brand). 

I posted everyday on Instagram to see my progress over time, but I was also hoping that maybe someone somewhere might relate or understand the meaning behind my portraits. Time in my studio varied from 5 mins to 6 hours daily. It wasn't always easy to find the motivation to create, since some days I was quite overwhelmed and emotional. Although, I always felt so much better after doing so. In fact, I would say that my sketchbook is my diary, and that every sketch was an entry of sorts. I want to add that my husband encouraged and took care of me throughout my entire journey, and that I couldn't have completed this "challenge" without his support. 

One thing that surprised me was that I wasn't inspired by the same thing anymore. All of a sudden, all I drew were portraits and butterflies, nothing else. I guess that makes sense though, since I don't think I'm the same person as I was before. My entire process was also really therapeutic, often starting as an overly saturated abstract ink wash (my favourite colours) and then becoming a more technical portrait drawing made with coloured pencils. These two levels of complexity kept me engaged. Through these portraits, my aim was to echo my emotions. 

Art is helping me heal. I get to spend time thinking about my blue butterfly and I still feel like I'm still creating memories with him. I truly believe in art therapy, and I hope my experience can inspire other loss moms to take on a similar journey. You don't have to be an artist and you don't need expensive material. All you really have to do is set a time everyday or even every week (even just as little as 5 minutes), ideally somewhere without too many distractions and create something with media that appeals to you. This can range from collage work, painting, drawing, mixed media, playing an instrument, etc. In my case it was coloured pencils and ink on paper, while listening to music. The point isn't to have a collection of finished/frame-worthy pieces of art, but rather it's the process that counts. Noticing what feelings come up is key and letting yourself go through these emotions is important as well (all emotions are valid). At the beginning, it was a lot of pain and sadness for me, these days it's resilience. 

Here are some of my favourite pieces.
Day 10
Day 72
Day 76
Day 82
Day 84
Day 92
Day 100
Thank you to Emilie for sharing her story and her beautiful artwork. Please visit her website at ajisaiproject.art and her Instagram at ajisai.8i8 for more information about Emilie and her art.
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Marriage after loss

7/4/2021

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Marriage after a loss can be very difficult. Dealing with one’s emotions while grieving is already a tough feat on its own. Add another person and their emotions to the mix and it can get messy
I honestly thought a devastating loss would bring my husband, Nick, and I closer together. We already had a bond but our daughter’s death, the trauma of it all, would hold us together because we are her parents. We were the only ones we knew who had experienced such a loss. I thought that we could talk to each other openly about her and without judgment. We truly understood each other, and it was us against the world. He was my support system. As I have mentioned before, Nick took on the role of being my protector, making sure I was okay. To maintain that role, he put his own grief aside.

As time went on, I noticed that we grieved differently. I desperately wanted to talk about Zalayah as much as I could, but Nick hardly ever brought her up. I wanted to go to counselling together but after the first few sessions, I ended up attending alone. I started to feel like we drifted apart due to the different ways we grieved our loss. Not only that, but we were also different people after her death and would never be the same again. I felt like I had to get to know Nick all over again, this time the version of him that was grieving. I often wondered why Nick did not seem as devastated as I was, why he did not break down in tears as often as I did or talk about her everyday. It angered and saddened me, and I started to resent him. I felt like he had moved past it, and I was unable to. I stopped talking about her as much as I wanted to because I thought I would upset him.

Eventually I became so consumed by my own grief, just trying to get through the day, that I no longer focused on Nick. I guess I could say I became selfish by focusing solely on myself. I could also look at it as I only had enough energy to help me survive each day doing the absolute minimum. I just could not take on relationship issues as well. I started to shut down and started living in my head.

While speaking with counsellors, I became more aware of what was happening in my relationship. Our communication had completely broken down. I searched online for similar stories to see if what we were going through was normal and I was shocked to find out that couples who had a miscarriage were 22% more likely to break up as opposed to couples who had a healthy baby at term. For those who experienced a stillbirth, the number was higher at 40% more likely. I read that many couples go down the same path that Nick and I had travelled with some couples deciding to split up and I could understand why some couples decided to do so because I was in that situation. Nick and I grieved very differently, and our communication was non-existent, two issues that have led to many couples in situations similar to ours splitting up.
​

We decided to go to counselling as a couple. Talking about our feelings has helped us reconnect. I know he is still grieving even though he has a very different way of showing it. If you are experiencing issues within your relationship after a loss, I encourage you to talk about it and seek support. It is quite common and there are ways to help resolve the issues (see below links).

Why Couples Fight After a Miscarriage, and What to Do About It | InStyle
Ending the Silence: How Miscarriage Impacts Your Relationship (healthline.com)
How to Keep Your Marriage Intact After a Miscarriage | RELEVANT (relevantmagazine.com)
Tips for a Healthy Marriage After Loss – UnspokenGrief.com
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Christina's Story

6/30/2021

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We started trying in the summer of 2016 and got pregnant the first month. At the same time, I had found a lump in my breast. The ultrasound came back, and I was told I needed a biopsy. 
Over the next two years, I had 4 miscarriages, all around 6-7 weeks, as well as a few chemical pregnancies. My mental health was getting worse and worse. There did not seem to be a reason why I was always miscarrying. We were being followed by the fertility clinic and given progesterone supplements. We were thankful to be there but also found it more stressful as they do early ultrasounds. We would always see our baby just before loosing it which made things so much harder. 

Every miscarriage I was told it’s common, 1 in 4 pregnancies end in miscarriage and I always knew other pregnant women and felt like I was doing something wrong, wondering why I was always that 1 in 4. I felt so alone. Some doctors that I saw would tell me a miscarriage is just like a period and to just take Tylenol. A miscarriage is nothing like a period. You get bad cramps and then mild contractions until the tissue is passed. Even at 6 -7 weeks it was very clear what tissue was the sac and cord. 

I had started doing my own research into recurring miscarriages. The fertility clinic could not find any reasons why I was miscarrying, and I wanted more information. After my 4th miscarriage, my mother found out she had celiac. I also did the blood test and was borderline celiac. The next pregnancy I tried to limit my gluten intake which was hard as that is what I craved with the nausea from the progesterone.

That 5th pregnancy/miscarriage was the one that made it fully to 7 weeks. We saw our Jellybean on a few ultrasounds. The last ultrasound the technician used what I thought to be too much pressure with the wand and her hand, she was trying to get a better view of my tubes. I started spotting immediately after and miscarried a few days later. I was told by my doctor that it was “for the best” as Jellybean was measuring a couple days behind. 

This miscarriage was my breaking point. I did not want to stop trying but felt like I could not handle any more miscarriages. Each ultrasound we saw Jellybean grow and were so hopeful it was the one to survive. When I spoke with the doctor after I asked more about my borderline celiac test, he agreed I should try going gluten free. I immediately cut out gluten and we took a couple months off trying. Then exactly 2 years after we started trying, I got pregnant with my rainbow baby Dylan. Throughout the pregnancy, I was so scared to lose him. Every time I went to the washroom, I crossed my fingers and had to check hoping for no blood. After loosing Jellybean, I was gifted a butterfly box. It had information about the Butterfly Run. We had only told a few family members about our miscarriages, we signed up for the run and asked them to sponsor us. We went to our first Butterfly Run when I was 8 weeks pregnant with Dylan. When I first got in the field house at Carleton and saw everyone there, I just cried as I no longer felt so alone. There were people who had similar experiences to me and would understand what it’s like. I wrote that we were running for the 5 Spearin babies on the banner which felt so good to acknowledge them. 

We waited for a while to buy anything for Dylan I was worried we would jinx it. At around 22 weeks we bought a car seat and stroller, that day I saw blood when I went to the washroom. I cried all the way to the hospital thinking the worst. He was fine as I found out it was a UTI, but I never felt he was safe. He is almost 2 years old now and we love him so much!!

I have family in Victoria, BC and saw that the cemetery where my grandmother is buried has a spirit garden for miscarried babies. One time when we were visiting, we decorated a spirit house to represent our 5 babies. It is such a beautiful spot in the trees with wind chimes and so close to my grandmother’s grave. 
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​We started to try for another, and I already had a chemical pregnancy/early miscarriage. I am still gluten free and have a typical celiac reaction if I eat gluten. I am in therapy and on medication now for my anxiety. We are not trying to think about it too much and hoping we can give Dylan an earth-side sibling. 

- A big thanks to Christina for her courage to share her story.
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​Perinatal loss Q&A: A father’s perspective

6/22/2021

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As another Father's Day passed, I sat down with my husband, Nick, to ask some questions about his experience during my pregnancy with Zalayah and after she died. Here are his answers.

Did you feel like a dad when I was pregnant with Zalayah?
No, I did not feel like a dad while you were pregnant, but I felt like it was coming. I guess it is different for dads since we do not experience pregnancy. I know for you, you felt like a mom during the pregnancy, especially around the time she started moving. I did feel like I was ready to be a dad and that as soon as Zalayah was born, and I saw and held her that I would feel like one.

Did that change when she was born?
Yes, it did change in a way, but it also did not. I realized that even though I could see her and hold her, she was not really with us, so I still did not really feel like a dad. I felt like a failure. I felt like because we were not taking her home and I would not be experiencing fatherhood like many other fathers do that I was not a dad. I still feel like that today. Even though I talk to her and think of her often, it just isn’t the same to me and it makes me really sad.

Did you feel like you had to hide your emotions after she died?
Yes, I did. I could see how much pain you were in and felt that if I put on a strong face, it would
somehow help. I felt that if you saw me sad or crying every day that it would just bring you down. As a man and husband, I felt like I was supposed to help you and support you and I could not do that if I showed you how sad and depressed I really felt. There were many days I did not want to do anything, but I had to. I knew that I had to be strong for the both of us for us to get through it.

Do you feel like we were treated differently by professionals after her death?
Yes, I do. I remember during some counseling sessions only being asked one or two questions over the hour and all the rest going to you. It seemed like it was difficult (not sure what word to use here) for the counselors to talk to me and ask me questions. I do not know if it is because in our society men are supposed to be strong, they are not supposed to cry or show emotions, so I felt like they did not want to force a reaction out of me by asking too many questions if that makes sense. It is messed up, but I guess that is the kind of world we live in. But in a way I feel with a loss like this, the mother suffers more. You carried her, you felt her growing, and when she was moving you knew what she was doing at every moment every day. I think you had more of a real connection with her and an actual bond than I did. I was just kind of there on the outside like a spectator, I guess. Yes, I got to feel her move by touching your stomach and I learned about her and her routine by what you would tell me but that does not really compare to what you had and went through. To me the father’s time comes after she is born, and it is really sad that I did not get that. So yes, I feel like you and I were treated differently in terms of the support and care we received after she died, but I am not upset about it. I felt like you needed more support in this difficult situation.

Would you have liked more time off?
I feel like I did have enough time off, but I think that is just because of my profession, my boss’
generosity and the timing of everything since she was born close to Christmas. As a mechanic, it is very slow for garages after Christmas, so my boss let me take as much time as I needed but it was unpaid. I ended up taking almost 3 months off. In general, though I do not think fathers are given enough time off. I was not entitled to parental leave since that is only given for living children. There should be some type of leave for bereaved parents where they can both get EI for a certain amount of time. I have heard people being forced to use vacation or sick days which I do not think is fair. Even 15 weeks (maternity leave) may not be enough time. I know it was hard for you when I went back to work, so you went back to work early just to be able to do something, but I know we both probably were not ready. They (the government) should really do something about that.

Did you feel like you received adequate support?
Despite everything I just said, I do feel like I had a good support system. The Roger Neilson House was very good, especially the group sessions where they made a point of asking everyone (mothers and fathers) the same questions. Looking back on it now, I honestly do not know how we would have gotten through all of this without them. In terms of the other services that were offered, I guess it would have been nice if there was something specifically for fathers as there was for mothers but again, I understand why it is mostly focused on mom in this situation.


Here's a great resource for fathers looking for additional support. Kelly Farley, is a father to two angel babies and has made it his mission to help other fathers cope with pregnancy loss. Please check out his story by TODAY on YouTube Father Breaks The Taboo Around Grieving A Pregnancy Loss | TODAY or on their website Fathers grieve for pregnancy loss as much but get no help (today.com). To read more about his story, read stories from other fathers and/or share your story please visit his page Grieving Dads – To the Brink and Back. 
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What does Father's Day mean to me?

6/4/2021

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​No matter what anyone says, Father’s Day is a sad day for me. It is a day on which I feel like a failure. Men are depicted in movies, on T.V. and in books as being big and strong, prepared to fight to the death for their friends, families, and loved ones, but when you lose a child to something you can’t even see then where does that leave you? 
There was nothing to fight against. There was no foe to defeat. There was no crazy situation to overcome. There is just a single moment when someone tells you “I’m sorry sir, there’s nothing we can do” and you must accept it no matter how much you do not want to. For me, that day was Sunday, December 15th, 2019. My wife and I were expecting our first baby, a girl, we decided to name Zalayah. On December 15th, 2019, my wife had just made it to term. We were expecting our daughter within the next week or two.

My wife had gotten up that morning after having cramps the night before and said she could not feel our daughter moving. We called her midwife who told us to meet her at her office. She searched and searched for a heartbeat but could not find one, so she called an ambulance to rush us to the hospital. My wife was beginning to panic but I just kept telling her everything was going to be okay. Little did I know how wrong I was. The ambulance came and loaded her up. They told me I would have to follow behind in my car. That drive alone was the longest drive of my life even though I was speeding as fast as I could. By the time I found parking and ran up to the maternity ward, my wife had already been checked. The nurse met me and brought me down the hall to her room and up until that point I still managed to convince myself that everything was going to be okay. And then I heard the screams. It was like nothing I had ever heard before, screams of pure agony, screams of a broken heart. That is when the nurse spoke to me and all I can remember is “I’m sorry sir, there’s nothing we can do”. At that moment, my world fell apart. The rest of the day was a painful blur. Our daughter was born the next day and it was the saddest day of my life. I kept waiting to hear her first cry, but it never came, just pure terrible silence. My mind knew she was not going to make a sound but, in my heart, I pleaded with her to wake up, take a breath, open her eyes, anything. That day I cried more than I ever have in my life.

The next few months passed in a haze of sorrow and grief. Before I knew it, Father’s Day was just around the corner and I did not know how to feel about it.  Many people I spoke to told me I was indeed a father and that I should be celebrated but I did not feel that way because I did not have my daughter with me. I could not hold her, play with her, or give her kisses so I did not feel like a father. I debated telling my fiends and family not to bother doing anything for Father’s Day and to just treat it like any other day. In the end I decided against that idea and I let my loved ones do what they felt was best. Some wished me Happy Father’s Day, some did not. Regardless, for me, it just felt like another sad day like every other one since Zalayah died.

This year, Father’s Day may be a bit better. My wife and I were lucky enough to welcome our rainbow baby, Ezrah, on December 24th, 2020, the happiest day of my life. So, this year I will be able to spend it with my little boy which will surely be better than last year. I know, at the same time, I will be missing what could have been. My daughter Zalayah will always be in my heart. I speak to her everyday and this June 20th will be no different. It will surely bring tears to my eyes but this year at least my little Ezrah will be here to give me one of his beautiful baby smiles and I know that will make it a bit better.
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Book Reviews

5/28/2021

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Books were/are a major part of my grieving process as I needed guidance on how to navigate through the feelings I was feeling. I needed to hear stories from other grieving parents to be validated in what I was experiencing. This week we will look at two book reviews from community members. 
Both books are recommended to those who are grieving a loss as they provide guidance on how to cope from the perspective of two mothers who have travelled this journey.

The first book review is from @honouringaddison on Instagram, her first born, Addision, died during labour on November 10, 2020. The book is titled, 'The Baby Loss Guide' by Zoë Clark-Coates. Zoe is a baby loss support expert and has faced the loss of five babies. I personally follow Zoë on Instagram since she has many inspirational and relatable quotes on her page (@zoeadelle).​
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Book Review 1: 'The Baby Loss Guide' by ​@honouringaddison 
"My favourite part is the day-by-day readings. I do not know about other loss moms, but a lot of the time reading is exhausting. So, to have small sections to read is working very well for me. 
 
Each daily reading is accompanied with a quote and a task. The tasks often involve writing and there is space in the book to do so. Others are meditative, an emotion releasing activity, and self care.

Sometimes I stay on the same page for days because it is one that really hit home for me. Or when the task that is suggested with it is hard for me. I have found the more difficult ones have been most healing. I mark these pages and go back through them from time to time. 
 
I am only halfway through the daily readings. She touches on a wide variety of topics that have helped normalize a lot of emotions I have felt. Sometimes as I read it’s as if I’m having a revelation - she is describing a feeling or thought that I’d been having but hadn’t been able to make sense of it.”
 
Please visit The Baby Loss Guide - a book by Zoë Clark-Coates - The Baby Loss Guide for more information on this book and Zoe Clark-Coates’ Personal Story for Zoe’s personal story.
 
Our second review is by Myra, Silent Auction Director for the Butterfly Run Ottawa. Myra’s son Leo passed away shortly after being born prematurely at 22 weeks. The book Myra reviewed is called, 'Notes for the Everlost: A field guide to grief' by Kate Inglis. Kate’s twin boys were born prematurely; one survived, the other did not. Kate has used her experience to help many bereaved parents.
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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.
 
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