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 firstname.lastname@example.org
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 email@example.com 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
DIY Style Co. will have all the supplies on hand and show you how to make these gorgeous wall hangings using yarn and dowel. Choose the colour and style you want – they will have lots of options to choose from!
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.
This weekend, it was five years since Rob and I (Rachel) were married on an exceedingly hot August day. A dear friend from university gave the following reading at our wedding:
Blessing of the Hands
These are the hands of your best friend, young and strong and full of love for you, that are holding yours on your wedding day, as you promise to love each other today, tomorrow, and forever.
These are the hands that will work alongside yours, as together you build your future.
These are the hands that will passionately love you and cherish you through the years, and with the slightest touch, will comfort you like no other.
These are the hands that will hold you when fear or grief fills your mind.
These are the hands that will countless times wipe the tears from your eyes; tears of sorrow, and tears of joy.
These are the hands that will tenderly hold your children.
These are the hands that will help you to hold your family as one.
These are the hands that will give you strength when you need it.
And lastly, these are the hands that even when wrinkled and aged, will still be reaching for yours, still giving you the same unspoken tenderness with just a touch.
Little did I know how true these words would be when we chose this reading for our wedding. The last five years have been full of both happiness and sorrow; of joy and of pain. We first experienced pregnancy loss in 2013 in the silence of a missing heartbeat at our ten week ultrasound. We held hands in that dark room as the doctor told us that our baby had no heartbeat. We experienced the sheer joy that came with the birth of our son Gabriel in 2014. We held him and rocked him; this little miracle whose hands we now hold tightly as we guide him through life. Our hands held our newborn son Aaron as he entered and left this world so quickly. These hands have wiped away many tears of disappointment, sorrow and joy in the past five years.
The hands of our friends and families have also been integral to keeping our marriage together over the past five years. The hands of these people have prepared many meals for us, written or typed notes of encouragement and have lifted us up in prayer. The hands of these family members and friends have helped us organize Aaron’s Butterfly Run, sewn butterfly wings and have lifted up when we couldn’t stand.
As we celebrate our anniversary, we are so thankful for the past eight years together. They have been hard and amazing years and we are so blessed to have each other. I won't sugarcoat the truth. These past five years have been the most challenging years of my life. Loss has dramatically changed both Rob and I. Parenting a toddler is more difficult than I had ever imagined, but is so rewarding. The help from our friends, families and counselling services from Roger Neilson House have helped get me back on my feet through this grief journey.
Matt from Green Tea Photography did an amazing job with our our wedding day photos and we wanted five year anniversary photos in the same spot. Ariane DL Photographe generously donated a photography package to the Silent Auction which we won. She beautifully captured our family including an ultrasound photo of Aaron and a butterfly in memory of our first pregnancy lost at 10 weeks. It was important to me to incorporate all of the members of our family in the photos.
The Pregnancy and Infant Loss (PAIL) network has announced that it's moving from its Facebook page to a Facebook group! This new change will allow PAIL to foster an interactive and inclusive online space where members will be able to engage more directly with PAIL Network and members of our community.
When PAIL surveyed its members back in 2016, members said that they wanted more opportunities to connect with other families online. Moving from a Facebook page to a group is a step in this direction, as it will allow members to more easily communicate with each other, and with PAIL.
This change means that, effective August 7, 2017, the current PAIL Network Facebook page will become inactive. If you would like to continue receiving updates from PAIL Network, and contributing to the PAIL Facebook community, please request to join the new Facebook group.
Please help us spread the word by sharing this information, and inviting friends and family who have been affected by pregnancy and infant loss to join the new group. See you there!