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.
Thank you so much to everyone who volunteered and participated in Aaron's Butterfly Run on October 14 2017. With your support and donations, we raised over $30,000 for pregnancy and infant loss programs at Roger Neilson House. There were over 400 participants at the event! We are so grateful to our sponsors, volunteers, volunteer photographers, speakers and partners for making this event possible. It truly was an amazing community event. Rob and I could not have pulled this off without the support of our amazing organizing committee. Photos from the day will be coming soon. I (Rachel) was so overwhelmed by everyone who came to the event and remembered their butterfly babies. Thank you from the bottom of our hearts for all of your support.
At Aaron's Butterfly Run, one of our goals is to highlight and share local pregnancy and infant loss resources. You may have noticed our resources tab which includes information on a variety of support groups and infertility, pregnancy and infant loss resources in Ottawa/Gatineau. We are always adding to the list, so please email us if you come across any resources that you have found useful during your grief journey.
While Rob and I were pregnant with Aaron, we were contacted by a lovely woman named Deanna. A dear friend from church had requested a Hope Box for our family after Aaron's diagnosis. Deanna coordinates The Hope Box program in Ottawa and the surrounding area. Hope Boxes are a faith based resource filled with items and healing tools intended to support those who are grieving after losing a pregnancy or after the loss of an infant. They are made available for free to anyone who may benefit from receiving one (any age or stage of life). There are also Hope Boxes that can be tailored for subsequent pregnancy after loss. The Hope Box program started in the United States through an organization called Hope Mommies and the first Hope Box program in Ontario was started at Riverside Community Church in Swastika, Ontario. The Hope Box is now in Cobden, Kingston, Ottawa, Oxford-Brant and Swastika.
I (Rachel) was privileged to share Aaron's story at a Hope Box fundraiser this spring. The Hope Box program in Ottawa and area is holding a Ladies Hope Box info night on September 22 at 7:00pm at 35 Rob Way in Kemptville, Ontario. You can RSVP to this event at email@example.com
You can learn more about the Hope Box program on their website. You can also request to join their closed Facebook group to find out more information about this great resource. They will also be attending Aaron's Butterfly Run with a Hope Box, so be sure to check them out!
Yesterday, Aaron's Butterfly Run Ottawa/Gatineau was featured on Daytime Ottawa Rogers TV. Rachel Samulack (Aaron's mom and lead coordinator of Aaron's Butterfly Run) and Amanda DeGrace (one of our volunteers) spoke to Dylan Black about pregnancy and infant loss.
Rachel and Amanda highlighted some of the resources that are available to individuals and families in our community who experience such losses. For example, thanks to Mom Friends and Just Change Ottawa, our region will now have Butterfly Boxes - boxes filled with information and resources for those who experience miscarriage or infant loss. The Butterfly Box will be officially launched this evening from 7-9 PM at the Heart & Crown in the market. We would love it if you could join us to celebrate and learn more about the Butterfly Box.
They also highlighted the upcoming run on Saturday October 14th. You can register here.
You can view the full interview segment below.
Thank you Dylan Black, Daytime Ottawa and Rogers TV for your support!
If you think you can volunteer, please e-mail us at firstname.lastname@example.org or feel free to send us a message via our social media accounts!
Thank you so much!!!
The Butterfly Boxes of Ottawa/Gatineau will:
Our goals are to:
But we still need your help!
We would love the help of community to spread the word about these boxes so that families who are experiencing a loss will be able to access them. Thanks for telling others!
We are also looking for help from some key stakeholders to see this project through:
Please e-mail Mom Friends and let them know how you can help!
In addition to day-to-day operations, Mom Friends is working hard to launch the Butterfly Box Ottawa/Gatineau sometime this fall. We’ll keep you posted on a formal launch date, and provide more details about the Boxes as they come together.
Thank you SO much to our partners at Mom Friends and JustChange for making this happen!
And lets celebrate!
Please join us for #JustDrinks on September 19th at the Heart & Crown in the Byward Market from 7-9 PM to celebrate this $1,000 grant! Here is a link to the Facebook event.
I (Rachel) read a great article this week in Still Standing Magazine on body image and self-love after pregnancy loss. It’s (another) topic that is rarely discussed after loss, but it is something that some women struggle with. The first few weeks and months after Aaron’s death were difficult because I was emotionally and physically recovering. The physical reminders of what should have been were there every day. My milk came in the day of his memorial service. This was a painful reminder that my body was ready to nourish the life that it had carried for eight months. Two weeks after Aaron’s birth, a baby cried at the grocery store and my milk came down. I struggled into clothes that were too small because I couldn’t stand wearing my maternity clothes. At three weeks post-partum, I had someone look at my (empty) belly and ask when our baby was due. A few weeks later at a wedding, we were asked when we were going to have another baby by someone who didn’t know our story. I stood there with empty arms, my heart crushed by grief and my eyes overflowing with tears. I mumbled something and quickly ran away.
Our bodies are amazing – they can carry life, and sometimes life thrives against all odds. Over a year later, sometimes it is hard to remember what being pregnant felt like. Other times, I find that Aaron’s loss is still so fresh. While I was pregnant with Aaron, I received a care kit from a charity called String of Pearls which is based in the United States. String of Pearls was created to provide a nurturing and safe place for families as they navigate the path following a fatal prenatal diagnosis that will result in the death of their baby prior to, or shortly after birth. The keepsake box that they sent was lovingly packed with materials to make handprints and footprints, a beautiful storybook and memory making suggestions. It also included book called “A Gift of Time: Continuting Your Pregnancy When Your Baby's Life is Expected to Be Brief” by Amy Kuebelbeck and Deborah L. Davis that discusses perinatal palliative care. The kit also included (among other items) a cream with cabbage leaves in it to help ease the physical discomfort associated with milk coming in after birth. In Ottawa, Mom Friends have created a post-partum care package for new moms that would also be helpful for the physical recovery of childbirth for moms who have experienced a late term pregnancy loss.
It’s hard living with the grief of pregnancy and infant loss. I still find living in my post-partum body difficult. From the outside, you likely wouldn't guess that I have body image issues. It doesn't help that as a society, it is expected that women will have flat tummies immediately after giving birth and no stretch marks. I have been trying to be kind to myself, but it doesn't always happen. Three pregnancies in three years has changed me both physically and emotionally. The scars are there both inside and outside. I have been going to counselling which has helped immensely. I have one beautiful living child and for that I am so grateful. However, I still wish that my other two butterfly babies could be here with us. Until that time, “I'll find you in the morning sun, and when the night is new, I'll be looking at the moon, but I'll be seeing you.” Sammy Fain
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For all the details, and to register, click here.
This summer, I (Rachel) had the privilege of co-authoring an article with doula and fellow bereaved mom Sarah Mcilwham for the Ottawa-based magazine From Belly to Baby. We shared some ideas about how to support friends and family members through pregnancy or infant loss. Rob and I are so blessed to have thoughtful friends who purchased a tree in memory of Aaron through the City of Ottawa Commemorative tree program. Aaron’s tree is planted in a park close to our home and we visit it often. Gabriel always waves at the tree when we drive past the park and it has become part of our routine to visit the tree. Sarah and I have included some ideas in the article below for ways that you can support a friend or family member who has or will experience pregnancy or infant loss.
Providing Support After Pregnancy or Infant Loss
Although the majority of pregnancies end with the birth of a healthy baby, it is estimated that one in four pregnancies ends in miscarriage (loss up to 20 weeks of pregnancy), and approximately 7 in every 1,000 pregnancies end in stillbirth (loss after 20 weeks of pregnancy). With this level of frequency, it is very likely that either you or someone close to you have experienced this traumatic event in their lives. Other families and individuals experience the devastating loss of a newborn or infant. These types of losses are shocking, and are rarely openly discussed in today’s society, which can leave those who want to support their family member, friend, colleague, etc. feeling a bit lost and unsure how they can best support their loved ones.
Simply being present for someone, to quietly witness their grief, can be so important for the person who has experienced the loss. They will encounter so many people who will feel the need to say something, anything in an effort to help the grieving parent to feel better. In many cases, it is most helpful to listen, witness and acknowledge their grief, and let them know that they have a safe place to express all their emotions and feelings. In the first couple of weeks and months, they may feel supported by their community, but it is also important to be there in the many months and years to follow.
The intensity of their grief will lessen in time, but the grief and love they feel for their child will never leave them. Walking with someone beside them in their grief can be a very valuable part of their healing journey. In addition to being there to witness someone in their grief, many people will want to provide support in a more practical and tangible way. Here are some practical ways to support someone who has experienced a pregnancy or infant loss, in the immediate time after their loss, and in the months and years to follow. These ideas will help the individual or family during their struggle to stay afloat when it feels like the waves of grief keep crashing down.
Bring a Bite to Eat. People often say “If you need anything, just ask.” Chances are that they will not ask. Bring over dinner, mow their lawn or clean their house. Do whatever it takes to make the daily grind more manageable. If you aren’t a cook, give a gift card to a restaurant like The Red Apron, which offers a home cooked meal with delivery in the Ottawa area. Quite often, people receive meals immediately after the loss but support is also needed after they return to the daily grind.
Say Their Name. The baby they lost is a person no matter how early the loss. Honour their baby. Some people just do not know how to act or what to say in these types of situations. Talking about the loss of their baby acknowledges the life that was gone to soon.
Remember the Milestones. Acknowledge tough days. Days like Mother’s Day/Father’s Day; diagnosis dates; due dates; the actual day the baby was born; their baby’s would-be birthday; all of these dates are hard. A small gesture of a card, phone call, or even a text, will go a long way to let them know that their baby is not forgotten and that you are thinking of them.
Send a Care Package. Hamilton-based Tenth Moon Mothercare has created a Mama’s Heart care package to help soothe the hearts of women who experience pregnancy or infant loss. A portion of proceeds from the sale of this package support the Pregnancy and Infant Loss (PAIL) network. Cornerstone Wesleyan Church in North Gower has a faith-based Hope Box program in Ottawa/Gatineau for individuals and families who have lost a baby through any type of pregnancy or infant loss. The purchase of this box includes a charitable receipt.
Give them Information on Support Groups. Talking with other parents who have experienced a similar type of loss can be an important part of healing for the family. There are many support groups for individuals or families experiencing pregnancy and infant loss in the Ottawa / Gatineau area. Roger Neilson House offers a Perinatal Loss Support Group for individuals and families who have lost a baby over 20 weeks gestation as well as a group for siblings and grandparents. The Ottawa chapter of Bereaved Families of Ontario offers a monthly Support and Share night for any pregnancy or infant loss (first Tuesday evening of every month). Empty Arms, Open Heart is a support group for any pregnancy and perinatal loss that meets monthly (second Thursday of each month). The Center for Family Intervention Studies and Research (CÉRIF) offers a free French support group meeting for parents who have experienced a perinatal loss and they also offer a pregnancy after loss group in French at the Université du Québec en Outaouais. There is an infertility support group the last Saturday of every month at the Ottawa Fertility Centre. MotherWit Doula Care Ottawa also offers a monthly (3rd Friday evening of each month) pregnancy and infant loss support group.
Make a Donation in memory of their baby to an organization that supports bereaved families and individuals. Roger Neilson House, Bereaved Families of Ottawa and the Pregnancy and Infant Loss Network all provide services for families and individuals who have experienced this type of loss.
Help plan a memorial to remember their baby. There are several things you can do including planting a commemorative tree or garden, organizing a birthday celebration at a park, etc. The City of Ottawa Commemorative Tree Program people who wish to have a tree planted in a City park in remembrance or to commemorate a loved one who has passed away.
Walk to remember their baby during Pregnancy and Infant Loss Awareness Month in October. On October 14th, 2017, Aaron’s Butterfly Run Ottawa/Gatineau will be taking place to support families and individuals who have experienced pregnancy and infant loss. The run is being coordinated by a small group of volunteers who have personally experienced the pain of pregnancy and infant loss. The 2017 run is being organized in honour of baby Aaron, a patient of the Perinatal Hospice at Roger Neilson House who spent 100 precious minutes with his family after birth. Butterfly Wings for children are for sale as a fundraiser for the run at The Three Sisters Bakeshop (2211 Arch Street). More information on the run can be found at www.butterflyrunottawa.ca.
The support of friends and family can help to alleviate some of the feelings of isolation that often accompany a pregnancy or infant loss. Of course, no matter how much you want to, you can’t take your friend’s pain away. This loss will stay with them forever. However, you can do the next best thing: you can be there for them while they navigate their journey through grief and can provide support when they need it most.
One of our goals for Aaron's Butterfly Run Ottawa/Gatineau is to raise awareness and share resources that touch on the topics of miscarriage, infant loss, and infertility. There is a relatively new documentary that does just that. It may be a controversial documentary, as the film dabbles into the realm of a social media experiment; but at the same time, the couples in the film are highly relatable to those who've experienced miscarriage, infant loss, and/or infertility. As a volunteer for Aaron's Butterfly Run Ottawa/Gatineau, and as someone who's experienced infertility for almost 3 years, a first-trimester miscarriage during the 1 and only time I was pregnant, and as someone who is about to undergo IVF, I found this film to be extremely relatable.
Here is how the producers of the film would describe it:
Some think an in-vitro fertilization (IVF) contest sounds crazy, but countless Americans desperate to start a family believe this social media experiment is their only hope. Oscar-nominated director Amanda Micheli’s provocative documentary follows several aspiring parents who desperately want to have a baby but are struggling with miscarriage, infant loss, infertility, and the high cost of infertility treatments. They place themselves in the hands of a Las Vegas doctor and his annual contest, which offers a prize of a free round of IVF — with no guarantee of success. Contestants post their video entries on YouTube, counting on the votes of strangers to make their dreams of parenthood come true.
Despite the fact that nearly 1 in 6 couples worldwide are unable to naturally conceive and carry a baby to term, for fear of judgment or heartache or both, infertility stories are largely kept secret. While exposing private pain online to win a contest is a brutal proposition, IVF is rarely covered by insurance in the U.S., so many infertile couples consider this a gamble worth taking. Through this controversial contest, VEGAS BABY navigates the complexities of America’s burgeoning fertility industry and unveils the class disparity within a topic that is often clouded by judgment and stereotypes. Micheli explores universal themes of desire and loss through her intimate portrait of the diverse individuals – from a devoutly Catholic Latino couple in Texas to a lesbian Lady Gaga Impersonator in New York – determined to have a baby against all odds.