By Mike Wheeler, a sad dad​

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

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

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

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

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

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

And I wrote this blog post!

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

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

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

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

Sad dads and bummed mums.

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

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

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

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

Moms and dads: the same but different?

I think that this all comes from two places:

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

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

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

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.

- Leah

In hopes of supporting other families in their grief, we make an effort to share personal loss stories from our Committee and members of our community. Today Melina, a local member of our community, shares her story about the  loss of her daughter Rosa. Please read her story, in her words:

Our Angel Baby

​The minute I found out I was pregnant for the first time, I was in love. Words cannot describe how happy my husband and I were. My first pregnancy, a baby girl, healthy, strong, and very active! We named her Rosa Leia as in Princess Leia.

For the first month we didn’t tell anyone because we wanted to wait for Christmas to surprise just our immediate families. So for my family we were all sitting down for Christmas eve dinner, I stand up saying I want to take a picture of everyone. They ask what about you? I say well I like taking pictures not being in them. So they let that go and little did they know I was videotaping. Now that everyone’s ready, I say everybody say Melina’s pregnant. Everyone went silent, and then they freaked out once they realized what I said and that it wasn’t a joke. Lots of excitement! For my husband’s family it wasn’t the greatest situation as we were with his family at his grandmother’s funeral. We didn’t want to say anything right then because we didn’t want to take any focus off of her. But my mother in law was too excited and she made an announcement, but it brought a smile to their faces.

Everything was perfect, three months in we are in the clear yyayyy!!! (So we thought) So we announced it to all of our friends and family on Facebook. We did Facebook live for the gender reveal even though my husband and I already knew, it was a surprise for everyone else. She was very active in the ultrasounds, and her heart was very strong. She was still too small for me to really feel her though, only once I felt butterflies and one time I felt a kick, so it was nice to see her move in the ultrasounds.

Everything was going well until nineteen weeks. We had an ultrasound and she was active and healthy but little did we know until a couple weeks later, (it was so long due to poor paper work at the ultrasound office.) We found out that she was behind in several measurements, so I was told to book a follow up ultrasound at The Civic hospital which is where they send you when they are worried about the baby, which I didn’t find out until afterwards. So I was worried but didn’t think anything too bad and I pushed the fears as far down as I could so I wouldn’t stress. I talked to several moms and they said their babies were smaller on the scales as well and they came out perfectly healthy. Also I kept feeling her move, well what I thought was her moving at the time ended up that it was just her tiny little body moving downwards as my body I guess knew that she was supposed to come out. So sitting in the waiting room for our ultrasound, I rub my belly and say I know you are ok, everything’s ok. So we finally get called in and we were asked why we were there, so we tell her because her measurements were behind, but we didn’t find out until weeks later due to poor paper work otherwise we would have come in earlier. She says ok no problem let’s take a look. So she puts the screen on and starts moving the camera around and she’s not saying anything but she had just started. I asked oh is that her femor, she is still silent and in a low voice, yes it is. She clicks a few buttons, takes a measurement, I think looking back now taking the measurement was just for show. She says I’ll be right back I have to go get the doctor so she can talk to you. And I ask is everything ok? She says the doctor will go over everything with you. My husband instantly says something is wrong, I just kept say no no, everythings ok. So we ended up having to wait over an hour or so for the doctor to come talk to us. So  the doctor arrives and she sits down and the nurse closes the door. She looks at me and says I’m sorry I have to tell you this but your baby doesn’t have a heartbeat. I looked at her and said what do you mean, she says it looks like she has been gone for a while. I was in complete shock, then boom I lost my mind and cried like crazy. My husband hugged me and rubbed my back and I just couldn’t breathe properly because I was crying so hard. Once I finally calmed down a little, I asked what happened to her. The doctor couldn’t answer that since you can only see so much in an ultrasound. She said once they do an autopsy they will hopefully be able to tell you what happened. I was past 20 weeks so I had to give birth to her. She then asked me if I wanted to wait or get induced right away. I said right away as I felt she did not belong in my belly anymore. So I was to be induced the next morning. After we left the hospital, I started calling my immediate family, so one by one I said the same thing. “We lost the baby.” I was so numb, yet couldn’t stop crying. We stopped in to see a family friend who we know had a miscarriage many years ago, to get hugs and a little advice.  When we got home my sister was already at our house, I went straight to my room with the first teddy bear we bought for Rosa and just squeezed it and laid on the bed crying while my sister rubbed my back. All I could say was why would God give her to me and wait so long before taking her from me. She was healthy, what happened? I don’t understand, I’m so angry!! What did we do to deserve this? I just don’t understand! The rest of my family came over to show support and give big hugs, thankfully we have a very good support system.

May 24, 2017 exactly three months before Rosa’s official due date, we go into the hospital at 10 am to be induced which wasn’t until 12. As we walk in on our door was a picture of Angel wings so people knew not to just walk in and disturb us. My parents met us there and spent the whole day with us. My sister, brother, sister in law and one of my closest cousins came to support us. Contractions were pretty far apart and pretty easy for quite a while, but at one point I had to get shot for the pain cause they were getting pretty strong. As everyone was still there with us, the nurse came in and asked if I wanted to hold her once I delivered her, I looked over and my cousin started crying and left the room, everyone else started crying. I said I am going to go with your experience/judgment call. If you think she looks so bad that you think it would scar us for life (because well we weren’t quite sure how long she was gone for so we didn’t know how she would look.) If you think it’ll be ok for us to see her then I definitely want to hold her. As my contractions started to get stronger everyone left, except my parents. It got to the point the pain was very intense so the nurse called for an epidural but it was too late. It was one big contraction, so my mom ran to tell the nurse its time. The nurse cancelled the epidural came in with what she needed and she had enough time to put that pad to catch liquids under me, and turned the light off and closed the curtain, as she sat down I gave a good push and out came my baby girl. Still in the sac. The nurse had to break the sac to examine Rosa which took a bit of time but I couldn’t see anything cause my legs were still up. The nurse said she looks really good do you want to hold her, and I shot my hands out to grab her. The first thing I did was cry really hard and just tell her how sorry I was for not being able to protect her like I felt I should of; I was her house and I felt like I didn’t do the one thing I was supposed to be able to do. Then once my eyes dried up and I really looked at her, she was absolutely beautiful. Even though I knew she was gone I had stopped crying and I was content in that moment holding my daughter. I stared at her and looked at my husband and I said “she has your nose”. I had to convince my father to come around the curtain to see her as he was so hesitant to, but he did and he said she looked like my husband. She was absolutely perfect. Physically there was nothing wrong with her, she was just tiny 1lb, 11 inches long. And already had thick black hair. No wonder I had heart burn. The nurse took pictures of her and took her hand and foot prints for us. I held her for 12 hours and all I could do was stare at her all night. I was so scared something would happened to her, so I kept her cuddled in my arms and I continued to stare.

In the morning they asked if we wanted someone to come in like a priest. We had a minister come in to say some words to send her little soul to heaven.  I looked at my husband and said you need to give me a time we need to leave otherwise I will not be able to let her go. The nurses said we could take all the time we needed. But we knew the longer she was out of me the faster she wouldn’t look like herself. So he said 1pm, so as it got close I put her down for a minute so I could go to the bathroom and get changed. Even that one moment hurt my heart being away from her. Once I came back out I held her in my arms again staring at every single inch of her body. Wiggling her toes and kissing her nose. My husband held me as I held her and we both told her we loved her so very much and that we will miss her and that we would see her again one day and hoped that she would look over us. As I was crying again I kissed her several times and put her down so the nurse could take her away. The nurse asked if we were sure we were ready and I said yes cause if it’s not now I’ll never leave. The nurse took her out of the room, my husband and I just held each other and cried. We left the hospital and went straight to the funeral home to choose an urn for her. Once we were down there, we stopped at a plant nursery and we choose a beautiful baby lilac tree, so it’ll  grow over the years as Rosa would have, we also bought an angel statue for our garden.

Once we received our daughters ashes, we planned a memorial service in our back yard in front of her tree with the same minister that sent her soul to heaven. Lots of friends and family came to support us to say hello and goodbye to our Rosa Leia. Once we finished outside everyone followed my husband, Rosa, and I as I was holding her little heart urn. We stood in front of the fire place and had everyone light a candle that laid out to spell her initials. The light ceremony would light the way so she knew where she could come to visit us.  As the last words were spoken by the minister, I was numb the rest of the day, just going through the motions. Thankful for everyone who came, we were also glad that it was just us now. Be able to mourn without people saying how sorry they were, and their “advice” and “comforting words”. I told everyone to tell everyone to not message or call us until we were ready because we did the memorial for Rosa to say goodbye but too also be able to get all that out in one day and not have to deal with the sorrys constantly every day. Well that didn’t work, everyone finding out wanted to pass on their condolences and their “advices” anyways. We knew that it was all coming from their hearts and loving place but when you are so sad/hurt/angry you don’t’ want to hear any of it. Especially that “Oh you can have another one” “Oh I know someone who had ex amount of miscarriages and now they have healthy babies” Well good for them, at this point I don’t care I’m sad and nothing anyone says will change that I lost my daughter, she is not an accessory that I can just go buy another one. I created that beautiful girl and she is no longer with us and I don’t understand. “Oh shouldn’t you have known, did you feel her stop moving, did you this or that” If I for one second thought there was something wrong with my baby girl I would have been straight to the emergency room. As I did at 6ish weeks when I had a major cramp that scared me, so I freaked out and we went to the hospital. So thank you for making me feel worse then I already do because you didn’t take the time to really think about the words that are coming out of your mouth, and take into consideration of what my husband and I are going through. I have gone through every minute of my pregnancy through my head, trying to figure out what I think I may of done wrong or could have done wrong or could have done differently through the process. Over and over again, so I’m putting myself through enough punishment on top of my mourning, I don’t need people that have never experienced what we are going through putting their two senses in. I know that seems harsh but that’s exactly how I felt at the time. But I know I followed everything to the book, the doctor said I did nothing wrong and she was healthy, so I’d still like to know why would all of a sudden God would take her from me, maybe one day we will know.

We went to the doctor’s to find out the results of the autopsy, and results from my blood work. We were lucky and I say that cause I know there are many people who don’t find out what happened to their babies. It ended up being what the doctor said was like winning the lottery in a bad way, it was a very rare occurrence that happened. The umbilical cord was longer than normal and because she was so active and so small and had so much room to move around, she ended up twisting the umbilical cord into a small knot somewhere along the cord to the point that she was no longer able to receive what she needed. Also the doctor reassured me there was nothing I could have done, and that I did nothing wrong. My blood work was all perfect, I didn’t pass anything on to her, it was just pure bad luck. No matter how much the doctor told me, and science told me I did nothing wrong, and there was nothing I could of done to avoid the situation, it still didn’t take away the feeling of guilt. I felt like I should have been able to save her, to protect her. Still to this day over a year after her passing I still feel like something could have been done to save her, especially if we received the results from the ultrasound at 19 weeks when she was still alive. I truly believe we could have at bare minimum had a fighting chance to save her.

Two weeks after giving birth to Rosa I went to see my psychologist to let everything out and to make sure I was dealing and mourning in a healthy way. I was so very numb and went through crying spells every day. I didn’t want to talk to anyone or see anyone, I just wanted my baby girl. Our first grocery trip was pretty bad, we were good until we past the baby section and I just completely broke down. Then seeing people with their babies for the longest time just killed me and I would just cry and want to scream. As much as everyone close to me wanted to make things better they couldn’t, I just had to emotionally and mentally get to a place that I could think about Rosa and be sad but be able to start moving forward with life. My husband kept telling me she wouldn’t want us to be sad all the time because it’ll make her sad. I think about her every day. She stole a piece of my heart and took it with her to Heaven.

Losing Rosa was not only difficult for my husband and I but both our families as well and we all mourn differently. I went to see my psychologist to make sure I was mourning in a healthy way, and just having that ear to talk to that isn’t part of the situation made things a little easier, having his advice opened my eyes a little more. So I wrote Rosa a letter and made keep sakes, for instance I have a necklace with her last ultrasound picture on it with her name with a little angel wing. I also bought a ring with her name and birthstone, I also bought a second urn so when we decide to, we can bury one and keep the other. I also created a memory box, to put the keepsakes, and first things we bought for her. Signing up for a run, Aaron’s Butterfly run, to help raise money for other families like ours was absolutely amazing. Not only did we help raise money but we walked for Rosa and her memory as we are doing again this year and every year the run is on. Soon once I am officially done breast feeding I am going to get a tattoo in her memory, she will always be in my heart but I want to where something proudly every day for the rest of my life to represent her beautiful life. I’d rather have her then keepsakes but if that’s what I have and I can do to make it easier for myself I will do it. I am doing and will continue to do what’s best for myself to get through the day without my daughter. Everyone will have their opinion about when you should be done mourning, or when you should be moving on, or how you should be mourning but you know what, you do what’s best for you and it may take longer from someone to be “ok” then it was for me but it’s no one’s business to tell that person to move on before they are ready to. It's all about learning to live a new normal. My life will never be the same and nothing will fill the void. So all I can do is continue doing the things I have doing like making her birthday special each year.

Rosa’s first birthday was this past May 24th 2018, we went outside and stood in front of her beautiful lilac tree and wished her a very Happy birthday and told her how much we miss her and love her. We bought her a little cake and on it one candle lit. As I was holding her little brother who was 6 days old, my husband got me to blow out the candle. We put the candle in front of her urn that sits on our fireplace and as I looked into my son’s eyes I broke down and cried. He has my husband’s nose as Rosa did, so when I look at his nose I think of her. We will continue do make her birthday special no matter how much time has past.

When people ask is this your first, talking about my rainbow baby. I look at them and say my first living baby, I delivered my daughter stillborn last year. To be honest I don’t care if it makes other people sad or uncomfortable, they asked how many children I have and I have two. One is an Angel baby and the other is a rainbow baby. My daughter will never be forgotten, I will make sure to make her passing mean something. I will not sweep this under the rug as it never happened, I will talk about her proudly and I will make sure her little brother, knows all about his big sister in Heaven.

Every day is hard because I’m missing a piece of my life, a piece of my heart. There are days I still break down, and just hug my husband and say I want her back. When I am in the kitchen I always stare out at her lilac tree, and it always make me smile. No matter where I go or do I think I would have loved bringing her here, and this would have been her first this or that. I wonder all the time what her personality would be like and who she’d end up looking like. All the things I’ll be able to do with my son I will always think I would have loved to be able to do this with her. My son keeps me busy but in no way has he replaced Rosa, but without her, my son may never have come to be. God has a plan and I know Rosa is looking over Landon as his guardian Angel. I still and will forever love her unconditionally and miss her so very much. I have my moments where I break down and cry because I want her here with me but it makes it a little easier knowing she is with lots of loved ones in heaven that are taking care of her and keeping her safe.
 
To my baby girl Rosa Leia,
I never thought I could feel so heart broken. As I watched my tummy grow and felt the little butterflies, my love for you grew stronger and stronger. I delivered you at 10:40pm on May 24, 2017 and once you were put into my arms I couldn’t let you go. You have your Papa’s nose, such a cute little nose. I wiggled your tiny fingers and tiny toes. I’ve never felt so content in a moment as much as the moment I first held you. I feel so empty without you. But just know Mama misses you and loves you with every fibre of her body and soul. God has a greater plan for you even though I don’t understand nor do I like it. I have faith that you are in good hands in Heaven with all your family and friends. As you were so loved here on earth you are so loved in heaven. Please watch over us baby girl. Until we meet again my sweet daughter, my beautiful Rosa Leia!

Love Mama

Thank you Melina for sharing your story with us. xo

Please join us on Saturday October 13th, 2018 to honour Théo and all other butterfly babies gone too soon. 

Today on the blog, one of our Committee members, Rachel Samulack (who was last year's co-Chair along with her husband Rob for Aaron's Butterfly Run), shares her thoughts on pregnancy after loss...

When Rob and I (Rachel) organized Aaron’s Butterfly Run in 2017, the committee wanted the run to be sustainable.  Rob and I feel passionate about sharing Aaron’s story, but we know that there are many other parents out there who would like to share their butterfly babies. Our vision was that the run would have new chairs every year.  This year, the Butterfly Run Ottawa/Gatineau is being held in honour of babies Charlotte and Théo. We are happy to see the run continue and the organizing committee is doing an amazing job of pulling the run together. 

We lost our first pregnancy at 10 weeks in 2013.  I first heard the term “rainbow baby” during our second pregnancy with our son Gabriel in 2014.  What does the term rainbow baby mean?  According to The Bump, "a rainbow baby is a baby born shortly after the loss of a previous baby due to miscarriage, stillbirth, or death in infancy. This term is given to these special rainbow babies because a rainbow typically follows a storm, giving us hope of what’s to come."  

It took Rob and I time to decide to have another baby after Aaron’s loss shortly after birth in June 2016.  We focused much of our grief and energy into Aaron’s Butterfly Run in October 2017, which was amazing as we met so many other bereaved parents and community was formed to support those experiencing infertility, pregnancy or infant loss.  After the run was over, I experienced another early pregnancy loss in November.  These losses have changed my life in more ways than I could have imagined.

Rob and I are now expecting another rainbow baby who is due in early October.  I am conflicted about using the term “rainbow baby” with this pregnancy because I don’t think that Aaron’s life and death was a storm.  My little boy taught me that we can love deeply without regret.  He taught me that life can be hard, but that a mother’s love for her child transcends life on earth.  I learned that we live in a balance.  Life is so fragile and precious.  Aaron was held and loved as he left this earth, which is all that any of us can ask for in our final moments. Gabriel asks about his little brother often and knows that they are both loved. 

As I feel the flutters of our new rainbow baby, I am both scared and excited for the future.  We went into our 20 week ultrasound with baited breath. The ultrasound technician knew about Aaron’s loss and quickly pointed out our baby’s kidneys (at 19 weeks' gestation we found out that Aaron was missing both kidneys which is incompatible with life after birth). The tears flowed down my cheeks for the rest of the ultrasound.  Gabriel has asked us repeatedly if we will get to keep this baby.  Honestly, I don’t know how to answer his questions.  

Pregnancy after loss is challenging. People expect that you will be “fixed” because of the subsequent pregnancy, but that is not how it works.  I have had a couple of people remark how happy we must be because we are now in the “safe zone.”  Through my experiences and those of other bereaved parents, I have learned that there is never a safe zone.  This pregnancy has been full of anxiety and I know that labour and delivery will have its own set of challenges.  We are so blessed to have our families and friends, amazing midwives, our doula and the social workers at Roger Neilson House who have been supporting us through this pregnancy.  

Carol Chevalier, one of the social workers at Roger Neilson House, along with students from the Master of Social Work program at Carleton University have recently completed a needs assessment on support for pregnancy after loss for bereaved parents who are considering pregnancy or are pregnant after perinatal loss. I have included an excerpt from the study below:

Amanda, our Director of Communications on our Executive Committee, has shared her story publicly a few times before. You may recall some of her past posts which you could check out here, here, here and here, if you’d like to catch up on her story.

Here’s what she more recently had to say: