The Butterfly Run Ottawa/Gatineau - Blog

Thank you to our 1st caterpillar sponsor of 2018!

4/13/2018

THANK YOU so much to National Capital Doulas for sponsoring Charlotte & Théo's Butterfly Run Ottawa/Gatineau 2018!

We wanted to send them a big shout out of thanks, especially since we're excited to announce that they are our first official sponsor this year!

Want to know more about National Capital Doulas?
National Capital Doulas provide support during pregnancy, labour, birth, and parenting. Their professional teams work together in pairs to provide seamless support to women and their families in Ottawa and the surrounding area. With National Capital Doulas, you can expect the best in in-depth education, professional birth doula support, reliable rentals, caring postpartum doula services, and safe placenta encapsulation. They are modern doulas for the modern family. For more information, check them out on social media or on their website.

Interested in sponsoring Charlotte & Théo's Butterfly Run Ottawa/Gatineau 2018? Check out our sponsorship opportunities.

SPINNING FUNDRAISER

4/7/2018

We are so excited to announce that for the months of April and May, SPINCO Ottawa, an indoor cycling studio offering full-body spin classes, has offered to donate proceeds from their weekly "Spin-it-forward" class to the Butterfly Run Ottawa/Gatineau.

Come join us every Monday night at 6:30 PM for a 50 minute Spin-it-forward class! This class is $10/person and all of the proceeds will be donated to the Butterfly Run Ottawa/Gatineau.

Some of our Committee members plan on attending the class, and we promise you that not all of us have spin experience! So whether you are an avid spinner or new to spinning, come join us for a fun workout that also supports the Butterfly Run!

SPIN-IT-FORWARD

Monday nights at 6:30 PM
$10 per class/ per person.
Purchase tickets and book online at www.spinco.ca (studios/Ottawa)

Thank you SPINCO Ottawa! We are SO excited for some awesome spin classes! If you haven't checked out SPINCO Ottawa yet, visit them on Facebook at SPINCO OTTAWA or on their website at: www.spinco.ca

Announcing: "Charlotte & Théo's Butterfly Run" / <<La course papillon de Théo et Charlotte>>

3/25/2018

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.

Anne-Marie recently suffered the loss of her sweet daughter Charlotte Anne. Anne-Marie, her husband Tom and Baby Charlotte went from CHEO's NICU department to Roger Neilson House; thinking they would only be there for a couple of hours, they were blessed to live there for 38 days. Anne-Marie hopes to keep Charlotte's memory alive by supporting others who have suffered pregnancy and/or infant loss and by giving back to Roger Neilson House for their continued love and support.

Claire’s beautiful baby boy Théo was born with a Congenital Diaphragmatic Hernia (CDH). Sadly, he passed shortly after his birth, due to complications related to CDH. Since then, Roger Neilson House has been a huge support to Claire and her husband François, through their Perinatal Loss Bereavement Support Group. Claire hopes to honour her son’s life by raising awareness about pregnancy and infant loss, as well as giving back to Roger Neilson House.

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:

Thank you to hereness & thereness for designing our original Butterfly Run Ottawa/Gatineau logo and graphics:

Thank you to Chloe B. Design for updating our Butterfly Run Ottawa/Gatineau logo for this year:

Research alert: pregnancy after loss

3/2/2018

Roger Neilson House is seeking feedback from members of the community on their experience with pregnancy following a perinatal loss. Their aim is to gather data that they will use to inform support services specifically developed to serve this population of parents.

Who can participate?
Participation is voluntary. Any parent can participate who is considering pregnancy, currently pregnant, or has been pregnant following the loss of a child and has completed a bereavement group at Roger Neilson House.

What is involved in participating?
You will be contacted via phone to answer questions regarding your loss and current status on your journey to have more children, which should take roughly 10-15 min. Following this phone questionnaire, you will be assigned to a focus group with other parents who are at similar points in their parenting journey.

If you are interested in participating in this research study, please contact:
Carol Chevalier
613-523-6300 ext. 622
cchevalier@cheo.on.ca

Volunteer Photographers needed to support now I lay me down to sleep (nilmdts) ottawa

2/28/2018

The precious moments that Rob and I (Rachel) spent with Aaron after his loss were lovingly captured by Véronique Lalonde, one of the volunteer photographers from Now I Lay Me Down To Sleep (NILMDTS).

NILMDTS is a U.S.-based non-profit organization that operates in more than 40 countries. It was formed in 2005 by Cheryl Haggard, a Colorado mother whose son Maddux died six days after birth; and Sandy Puc', a professional photographer contacted by Haggard’s husband to take photos of Maddux. Those tender photographs documenting Maddux’s eternal connection with his parents inspired Cheryl and Sandy to begin a nonprofit organization that has provided thousands of families of babies who are stillborn or are at risk of dying as newborns with free professional portraits with their baby.

More information on NILMDTS in Ottawa is available in this article from the Ottawa Citizen.

Véronique captured intimate moments including our nurse Shelley and I dressing Aaron for the first and last time. She photographed his hands and feet and Rob and I holding him. I cherish these photographs as they are a physical reminder that Aaron was here, if only for a brief moment. Annie Carrier, one of the volunteer photographers who photographed Aaron's Butterfly Run in 2017, is also a NILMDTS volunteer.

NILMDTS in Ottawa is looking for more volunteer photographers as they are currently very short on volunteers. Last week, February 21st 2018, marked nine babies photographed in eleven days by Ottawa NILMDTS photographers. If you are interested in becoming a volunteer photographer, please join the NILMDTS Prospective Photographers Facebook Group. They will also be holding an in-person information session in Ottawa on Saturday, March 3 2018 at 12:00pm.

Liz Bradley, another volunteer photographer with NILMDTS shared the following post on Facebook on February 17:

Tonight marks seven babies in one week that Ottawa NILMDTS photographers have photographed. My heart hurts.
It’s been a hell of a week with more calls than usual, and because we are short on volunteers, a few of us took two or more of those calls, myself included.
If you are a photographer in Ottawa who is even just a little on the fence about joining Now I Lay Me Down To Sleep, PLEASE let me take you for a coffee to chat about it. It’s such an amazing gift that we, as photographers, can give, and it’s not as difficult as you may think it will be. We NEED you. We really, really do.
The more photographers we have to call on, the less each individual photographer has to take on, which helps us as a whole. Having time between these calls is important to heal ourselves.
I realize this is asking a lot as we are asking you to share in someone else’s grief. It’s vulnerable and terrible, but it is also humbling. What we give these families is beautiful images of their babies - the ones that make them parents, that make their children siblings, that make their parents into grandparents. What we give them helps their healing and it is the most fulfilling charity work I’ve ever done.
So let me take you to coffee. Let me chat to you about my experiences within the hospital rooms and with these families who really need us on the worst day of their life.

If you are a local photographer, please consider joining the Facebook group and/or attending the in-person information session to learn more.

Greeting Cards for the hard times in life

2/23/2018

Do you ever wonder what to say to someone suffering a miscarriage, experiencing infertility, or losing a child?

Sometimes it is difficult to know what to say, or what to do, even if you've experienced similar losses of your own.

Katelyn Wooley at The Noble Paperie created greeting cards intended not only for the happy moments in life, but also cards for the struggles we battle through. The Noble Paperie's mission is to spread joy and hope to those with a mama's heart: who are struggling through miscarriage, infertility, and other pregnancy-related issues. They believe that becoming a mother starts when you prepare your heart to have children - not the actual manifestation of a child. A portion of their sales are donated to Miracle Babies.

Check out their greeting cards at The Noble Paperie.

Personal Loss Story: Amanda's Experience through Infertility and Miscarriage

11/14/2017

One of our volunteers, Amanda, has recently experienced her 2nd missed miscarriage, after 3 years of dealing with infertility. She’s chosen to share her current thoughts on our blog today.

Amanda says...

of Canadians who experience infertility

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.

Here we go again (or at least this is what we're thinking), while we experience our 2nd miscarriage this year...

But how did we get here? Here's a bit of our story, before we get to the present day sentiments:

In 2015, we tried for a year on our own, with no success. We were referred by our family doctor to the Ottawa Fertility Centre (OFC) where I was eventually diagnosed with Polycystic Ovarian Syndrome (PCOS) and hypothyroidism. 1 in 10 women in Canada have PCOS. It can prevent women from ovulating naturally, among having many other difficult side effects (weight gain, acne, the list goes on...).
During 2016, while under treatment with OFC, I took ovulation-inducing medication for 12 months. Unfortunately, all that those medications came with was a year of crappy side effects.
In January 2017, after 2+ years of trying to conceive, we had our first attempt at Intrauterine Insemination (IUI) with super-ovulation (SO). It worked and we FINALLY got pregnant! We were ELATED, to say the least. Unfortunately, during our 7 week early dating ultrasound, we found out that the pregnancy was not progressing normally. It took 3 more ultrasounds and by 10 weeks, the doctor confirmed that we had a "missed miscarriage". We were obviously devastated and we were given options of what to do next. Initially I tried taking misoprostol to medically induce a miscarriage, however after 2 failed rounds of misoprostol and another 2 months passing by, we realized there were still retained products of conception and I needed a medical procedure to finalize the miscarriage. Finally, in May of 2017 (after 5 months of the worst roller coaster ride yet) I had a Manual Vacuum Aspiration (MVA). As our fortune would have it, this didn't work either, and I ended up having a D&C which was finally successful to terminate the non-viable pregnancy.
Needless to say, we needed to take a break during the summer of 2017.
In August 2017, we received a call from OFC that we were next in line for the Ontario government-funded In-Vitro Fertilization (IVF) program. This meant that most of the costs of the procedure were covered under OHIP (things like medication were not covered). We did IVF in September and it worked, and we were pregnant, again! After all that effort and pain, it was initially reassuring to know IVF seemed to have worked. We were cautiously optimistic and thought that after all our troubles, this pregnancy was sure to work out. However, all that reassurance came crashing down when we experienced déjà-vu and were diagnosed with our 2nd missed miscarriage of 2017. It took about a month of repeat ultrasounds to receive the official diagnosis, but we ended up having a MVA at 9 weeks and 4 days (of pregnancy) to treat the missed miscarriage in November 2017.
Both of these missed miscarriages (or "silent miscarriages") were first-trimester “early” losses, but still heartbreaking nonetheless, especially following all of our struggles with 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:

If you want to be armed with a wealth of supportive resources to help you in your journey of infertility, miscarriage or infant loss, please check out the Resource section on our website and feel free to reach out to us!
If you are longing for a sense of more pride and are interested in volunteering to support other families experiencing infertility, miscarriage or infertility, feel free to connect with us and consider volunteering. We can always use more help!
If you are looking for a sense of community, feel free to message me (via our e-mail or any social media platforms) and check out our support groups listed on our Resources page

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.

The Butterfly run recap

11/6/2017

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.

resource feature: THE HOPE BOX

9/20/2017

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 cwchopebox@gmail.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!

Aaron's Butterfly Run Featured on Daytime ottawa tv

9/18/2017

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!