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.
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!
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.
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:
Ps: Do you notice that we’re smiling in these photos? Although infertility really sucks, it does not take away from the fact that I still love my life. I have an amazing husband, dog, family, friends, job, live in an incredible city and country, and I still have lots of amazing experiences in my life! Infertility does not discount that and it does not define me. But at the same time, just because I have a good life, it does not make infertility any easier. In my mind, there is no “at least”... because growing our family is what we want most in this world. But with that said, don’t worry about us too much - we are good to go! I just wanted to explain how much infertility can really suck, even if life appears to still be all sunshine and rainbows in all other aspects.
As you you know, the 2nd annual Butterfly Run Ottawa/Gatineau is scheduled for Saturday October 13, 2018. In keeping with last year's tradition, we've chosen to honour new families for this year's Run. As you most likely remember, last year's Run was Aaron's Butterfly Run, in honour of Rachel and Rob Samulack's son Aaron who passed away 100 minutes after birth. This year, we will be honouring babies Charlotte and Théo, along with their families, and of course, all other butterfly babies who were lost too soon. So please join us on Saturday October 13, 2018, for Charlotte and Théo's Butterfly Run / La course Papillon de Théo et Charlotte.
Charlotte's mother Anne-Marie Warren and Théo's mother Claire Pagé will be the Co-Chairs on our Executive Committee for the 2018 Run. Both Anne-Marie and Claire have chosen to share their stories about their beautiful babies gone too soon, in hopes of raising awareness around perinatal loss and supporting other families in our community.
Thank you Anne-Marie and Claire, for sharing your babies with us, and for helping us remember all butterfly babies who were gone too soon.
Special thanks to our graphic design partners:
It’s sad but it’s true, and a hard lesson to learn for those who experience it. A positive pregnancy test does not always end with a happy, healthy baby 9 months later. In fact, 1 in 4 pregnancies in Canada end in miscarriage and 1 in 6 Canadian couples experience infertility.
So this brings us to present day...
This current miscarriage might sting a little more than our last one because it follows an initially successful IVF treatment. Going through 3 years of infertility, with only 2 pregnancies and 2 missed miscarriages, is not an easy road. Being pregnant or experiencing a miscarriage for 80% of 2017 is not fun, especially when you have no baby to show for it. Life isn’t always fair and not every infertility road has a happy ending - at least that's how we're feeling at the moment. IVF is not always a miracle solution as miscarriages are just as likely as they are with a natural pregnancy. This is the unfortunate reality that I’m trying to accept right now.
No matter how hard we work, we cannot control our life when it comes to fertility. This has been a hard lesson to learn, since my husband and I have been people who have been told and who’ve learned that when you work hard, and if you work hard enough and for long enough, you can achieve your dreams. Unfortunately it seems that this is rarely this case with infertility and recurrent miscarriages. Or maybe we are just jaded and in a negative space at the moment... But these are our current sentiments. Unfortunately, words of hope and prayers get wasted on us at the moment - we feel we are more resilient and prepared when we are realistic and prepared for the worst. All we need is for people to say “that really sucks”. At this point in our lives, words of encouragement or hopefulness are more hurtful than they are helpful because we feel that we can not realistically live up to those hopes and prayers. Sometimes I miss our past happy-go lucky, everything is sunshine and butterflies, younger selves...
Other than the physical challenges of pregnancy and missed miscarriages, the emotional rollercoaster can be rough. Due dates like October 22nd and June 16th will always be difficult for us. Pregnancy announcements, baby showers, and even socializing with our peer group often surrounded by their babies is very difficult. We often feel left alone or left behind to fend for ourselves. And thinking about trying again is not as easy as it might initially seem. This will likely involve more testing from our fertility clinic in hopes to ensure I don’t have scar tissue or complications from the procedures I’ve needed to treat our missed miscarriages, genetic testing to see if these two back-to-back miscarriages are just bad luck or if there is another problem going on, a frozen embryo transfer (or a final 3rd transfer - we only had 3 embryos from IVF), and the stress and anxiety of it working or not working - all of these processes and scenarios are equally stressful for different reasons and this process can take months.
Although this miscarriage this time might have stung a little more because it was after IVF, at the same time, it was a tiny bit easier because I was empowered. I knew what resources existed in my community to help me get through this and I knew what to expect. I was not alone and I had knowledge. Knowledge really is power. This was the exact opposite experience I had with our 1st miscarriage. At that time, I felt like I was in the dark and our medical professionals didn’t provide us with any information to support us.
I have been volunteering for the Butterfly Run Ottawa/Gatineau this year. In case you don't personally know me, I’ve been the one behind the computer - taking care of most of our website and social media. And if you attended the Run, you probably met me at our Run Registration during race kit picks ups or on the day of the Run at our registration booth! I can truly thank the Butterfly Run Ottawa/Gatineau for arming me with this power of knowledge, this sense of pride, and this feeling of community. Without the Butterfly Run, I would not feel as strong as I do under these circumstances. It is for this reason that I’m choosing to share our story. I hope that by sharing our story, another person might feel less alone in their journey.
Because of the positive experiences Ive gained through the Butterfly Run, here are some scenarios you might consider if you're going through something similar to me. These are just suggestions, based on what I feel has helped me quite a bit this year:
My hope is that no other people feel alone, afraid, or in the dark when they miscarry or find out that a miscarriage is imminent.
Also, I wanted to caveat this post, or end this post rather, with saying Im sorry if I share my feelings bluntly or if they are not the most positive thoughts at the moment... I don't mean to share these negative sentiments to offer the cruel realities of infertility and miscarriage (perhaps the first half of my post was a little dark and dreary). If you are going through this, or something like this, and feeling hopeful or positive, I do not want to take that away from you. Please continue to feel anything you are feeling! Every journey is different, and our feelings can change throughout this journey. Unfortunately, my personal feelings are not as positive at the moment, but I still feel they are important to share. By sharing these feelings, I do not want to take away your hope, but if by chance you are also feeling something similar to me, I would like you to know that there is someone who you can relate to.
If you're interested in reading more about our journey, here are some other stories/snipits I've shared during our journey (writing and sharing has also been helpful for me):
XO Thanks for listening! And hugs to you if you’ve been through or are currently experiencing infertility and/or miscarriage. It’s not an easy road but hopefully we can make it a smoother and clearer road together.
After Aaron’s birth and death, I (Rachel, Aaron's mom) began re-reading the Anne of Green Gables series by beloved Canadian author L.M. Montgomery. I had completely forgotten that in Anne’s House of Dreams, Anne loses her first baby Joyce on the day that she is born. The scene is so poignant and heart wrenching to those of us who have experienced the loss of a pregnancy, infant or child. L.M. Montgomery knew all too well the pain of losing a child at birth. Her second born son, Hugh Alexander MacDonald was born still on August 13, 1914.
An excerpt from Anne’s House of Dreams:
Though it is 100 years since L.M. Montgomery penned these words in 1917, they still ring true in my heart. Marilla was right – it won’t always hurt so much. However, we live in a world where there is both joy and sorrow. I have learned so much about life in the past year.
Sometimes, grief comes crashing down like the waves of the ocean. However, in the last year I have learned that I will not drown. As much as the salty tears flow down my face, I wipe them away and I will continue to rise above the waves. It's hard, but life is still beautiful.
Today marks one year since Rachel and Rob Samulack's son Aaron was born and passed away.
Today, Rachel shares with us a letter she wrote to Aaron that she left with him during his internment and a follow-up letter she wrote to him this year in honour of his birthday on June 19, 2017.
Thank you Rachel for sharing such personal and heartfelt messages, and for everything you do to raise awareness about perinatal loss and support others who are experiencing something similar.
Rachel and Rob Samulack chose to coordinate Aaron's Butterfly Run Ottawa/Gatineau in honour of baby Aaron and in support of all other individuals and families who've experienced loss of a pregnancy, loss of an infant, or infertility. The Run will happen on Saturday October 14, 2017 during pregnancy and infant loss awareness month.
One of our goals for Aaron's Butterfly Run Ottawa/Gatineau is to break the stigma around talking about miscarriage and infant loss. As part of our vision, we wanted to encourage a dialogue and raise awareness about perinatal loss.
With that vision in mind, Margaret Sambol, one of the volunteers for Aaron's Butterfly Run, decided to share her personal loss story about the loss of her son Matthew. This is a letter she wrote to Matthew:
Dear Matthew David Sambol,
I first thought of you when I fell in love with your father in the year 2000, but it wasn’t until January 2009 that we began trying for a baby. When I had the first positive pregnancy test, we were so nervous and excited and we began to imagine what you might be like. Just a week later, I began to bleed and I felt certain I was having a miscarriage. Our family doctor booked an ultrasound to be sure.
The technician asked me if I had wanted to be pregnant.
“Yes, I was really excited about it,” I responded.
“Well, good, because there’s still a heartbeat,” she said.
I could see your little heart flickering on the screen and I was so relieved and shocked.
Despite this early scare, the pregnancy seemed to be going well. I was feeling healthy and fit and never had any morning sickness.
On May 22, we had our morphology ultrasound and we were delighted to see your hands and feet and spine and the flicker of your heartbeat. However, the technician said he was having trouble seeing some of your organs because you were small. Another technician was called in, but she couldn’t see either. They said we would have to come back for another ultrasound next week and we didn’t get the photo of you that we requested. We were worried, but told ourselves that it was okay that you were small. Some babies are just small, we said.
Later that night, our doctor called and he told us that variations in sizes of babies happen after 35 weeks and that it is very unusual for a baby to be small at this point. He said that it could mean that you had a chromosomal disorder. Joe and I came up with a little chant – grow baby, grow baby, grow – and we would sing that to you and rub my tummy and hope that you were getting bigger.
We had a follow-up ultrasound at the high-risk clinic at the Civic Hospital the next week. When we went in the technician still had a hard time seeing all the organs she needed to because of your small size. The high-risk specialist recommended that amniocentesis to determine if you did have a chromosomal disorder. I asked about treatment options and was told the only option would be an abortion. We told the doctor we didn’t want to risk losing you with an amnio if the information was not helpful for treatment and we didn’t want an abortion.
We had genetic counselling at the Children’s Hospital of Eastern Ontario the following week. She told us that the doctors who had looked at our file thought the issue might be something with my placenta not feeding you properly, rather than something with your chromosomes. After leaving CHEO, we felt a little better because we at least felt that the situation had been explained to us somewhat, but there were still a lot of tears flowing that night.
At our next ultrasound the following week, there was no amniotic fluid and I was put on immediate blood rest. We were also transferred to the high-risk clinic at the General Hospital. When we went home, I just tried to lie on my side as much as I could to improve the blood flow to you.
At our next ultrasound at the General, they confirmed that you still had no amniotic fluid. And the technician spent a lot of time looking at blood flow within you and through the umbilical cord. The next day, we met with maternal-fetal specialist, who explained a lot of things and offered us a lot of compassion. She explained that they were seeing a lot of resistance in my umbilical artery. Normally blood flows constantly through the artery even between beats of my heart. There’s a peak and then it slowly drops off, but it never reaches the zero line, it just settles in parallel to it. With me, they were seeing blood flow during the heartbeat to a peak, but it was quickly dropping off to zero. This means that the artery is constricted so blood can only flow through when it is under pressure. It also meant that you were not getting nearly enough blood and nutrients. Your body was compensating by re-directing blood to your brain, which is critical for development. Since my placenta was providing some removal of toxins, one of the places you were redirecting blood from was your kidney. This meant that you could not produce urine and it turns out that amniotic fluid is mostly made from baby’s urine. Without amniotic fluid your lungs could not develop properly and you were also vulnerable to bumps and shocks to my body. You also did not have the reserves needed to survive birth and you were too small for the life support equipment.
The doctor explained that if our baby was a normal size at 24 weeks they would take you out of me right away in a C-section. Since you were so small there was nothing they could do to save your life outside of me.
In that meeting we also talked about what it would be like to give birth to a stillborn baby and that waiting until you died within might be the best option for us right now, because there was nothing that could be done to save your life. The doctor and the nurse explained that I would be induced by putting a pill next to my cervix to soften it. It would still be labour and it would hurt but they would do whatever they could to reduce the pain. I would be allowed to hold you as long as I wanted and they encouraged me to name you.
I wasn’t feeling any fetal movement, so I wouldn’t know if it stopped. We decided to continue with regular ultrasounds to know when you died.
As our appointment approached on Thursday, June 25, I grew more nervous. That morning I just had this sick feeling in my stomach. I kept telling Joe how worried I was that they wouldn’t see a heartbeat.
When we got into the ultrasound room, my fears were confirmed. I couldn’t see your heartbeat and the technician stopped about 30 seconds in to go get a doctor. She came back with a doctor who looked at the ultrasound for about 10 seconds before saying, “I’m afraid we’re not seeing a heartbeat today.”
I knew it was coming and all the same it tore my heart out to hear that. I started to bawl and I grabbed on to Joe. I was vaguely aware that the technician had cleaned the jelly off my tummy. I was crying so hard, I started to hyperventilate and the doctor had to me sit up.
You were one day shy of 26 weeks gestation, which turned out to be good because they wouldn’t have let us have your body to bury if you had been born before 24 weeks.
They gave us a few minutes alone to cry together and then we were moved to another room to talk to the nurse about what to expect next. We decided that we wanted to be induced right away, but the nurse told us that the labour and delivery department was completely full. We were put on the induction list and told to go home and wait for a call. They called us on Saturday morning (June 27) at 10 a.m. to get to the hospital. We were surprised by how big the room they gave us at the hospital was: the nurses called it the presidential suite.
Throughout the day, they gave me doses of a pill to open my cervix which caused increasingly bad cramps. By midnight, the contractions were too intense for me to sleep. We walked around and I had a hot tub to help with the pain. At 7 a.m. I asked for something to help with the pain and they gave me a dose of a painkiller that made me feel loopy and out of it, but I could still feel the contractions, which were now about a minute apart. I asked for an epidural at 9:30 a.m., but the doctor came in and told me I was ready to deliver so I never got it. I pushed with the next contraction and I felt a large, warm mass come out. You were born at 10 a.m. on Sunday, June 28. As soon as you were born, the pain stopped immediately. The doctor declared you were a boy and handed you to me on a blue hospital pad. She warned me that since you had been deceased inside me for several days, your skull had softened. You had tiny, perfect ears and beautifully shaped light brown eyebrows. Your limbs were long – it was clear you would have been tall, but you were so skinny.
Joe and I just held you and looked at you for a while. We got out the name list and chose Matthew David for you. The nurse helped us to bathe you and then you were weighed, just 200 grams, and dressed in a sweet white woolen cap and onesie. We spent several hours with you, but had to leave you at the hospital and go home alone.
My arms felt empty for not holding you. My breasts made milk that you would never drink. To say that I’m sad because you died doesn’t really express how much hope I had in you. I’m sad because I wanted to see your little chest rise and fall. I’m sad because I wanted to see your little eyelids flicker and your beautiful eyes look up at me in wonder. I wanted to feel your little hand grip my finger tight. I wanted to see your daddy be utterly in love with you. I wanted to nurse you and change your diapers and get up at 2 and 4 and 6 a.m. to meet your needs. I wanted to see your first smile and your first word, your first laugh and your first step. I wanted to teach you to swim and impart our love of reading. I wanted to see you go to school, make friends and fall in love. I wanted to have pancake breakfasts together as a family every Saturday morning. I wanted to know what interested you and help you with your homework and later maybe help you choose a career. I wanted to see you graduate, get married and have babies of your own.
I miss you so much and I love you beyond words.
With love from your mother,
July 9, 2009
Hello, I'd like to start by introducing myself. My name is Rachel Samulack and I am the mother to 3 children, but only 1 is here with me today. On June 19, 2016, I lost my son Aaron 100 minutes after birth. My husband Rob and I are organizing Aaron's Butterfly Run Ottawa/Gatineau in his memory. If you would like to learn more about Aaron and our time with him, you can read his story here.
Today, my son Aaron would be 10 months old. These milestones are hard. I think about all of the things that Aaron would be doing at 10 months old. He would likely be crawling all over our living room and eating all of the crumbs off the floor. He would have lots of teeth to try all sorts of new food as summer arrives. If he were anything like Gabriel at 10 months, I would be exhausted because he would still be nursing like crazy at night. Now I am exhausted because I am back at work, juggling work/life/being a wife. I would be washing double the amount of cloth diapers. Yikes. These milestones are hard. Some months, I completely forget and other months the 19th hits me like a brick wall. Last week also marked the due date of our first baby who we lost at 10 weeks in September 2013. Pregnancy and infant loss just suck.
The loss of Aaron has shaped the way that I think about the future and the present. I watch the children of friends who are the same ages as my two little ones. I watch their interactions with curiousity and amazement. I feel sad for Gabriel because I know how much fun it is to play (and fight) with younger siblings. I get sick of hearing "Oh, you have lots of time" or "Don't worry, you will have another one." I am so grateful for Gabriel, my lovely, wonderful little boy. However, Gabriel does not replace the loss of Aaron and the expectation that I had for our family when I found out we were expecting Aaron. As Aaron's one year birthday approaches, I have to figure out a way to mark another milestone. A milestone celebrating the joy of his life and the sorrow of his loss. Joy and sorrow are now firmly intertwined in my life. How do you mark these milestones? How do you celebrate your babies who are no longer with us on Earth? I would love to hear from you with the ways that you celebrate your butterfly babies.