The Butterfly Run Ottawa - Blog

Thank you to TD Canada trusT for being a spOnsor!

6/27/2017

Rachel and Rob Samulack, along with their son Gabriel, were absolutely thrilled to accept a $500 donation to Aaron's Butterfly Run Ottawa/Gatineau from TD Canada Trust!

Alison Nobbs, the bank manager at the Ottawa Kilborn branch (now relocated to Billings Bridge), presented the cheque to Rachel and Rob. Coincidentally, Anne Jones, a registered nurse from Roger Neilson House also happened to be at the bank and agreed to take a photo as well!

Thank you to TD Canada Trust for supporting parents facing pregnancy or infant loss and also for supporting the Children's Hospital of Eastern Ontario (CHEO)!

Join in on The Discussion about Grieving Fathers

6/23/2017

You might recall one of our posts before Father's Day, where we spoke about Kelly Farley, who is a published author of Grieving Dads: to the Brink and Back.

Kelly will be joining the Love & Loss Project on Sunday July 25 at 8 PM to talk more about the male experience of grief and the 2 years that he spent interviewing other men about their experiences of miscarriage, pregnancy and child loss.

So mark this on your calendars because you are all invited to join in the discussion with the Love & Loss Project and Grieving Dads on Sunday July 25th at 8 PM here.

Join the discussion here

Rachel's Letter to Aaron on his one-year birthday

6/19/2017

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.

A letter written to Aaron, left with him during his internment...

June 22, 2016

Dear Aaron,

Although your time on earth was short you are so loved. You were such a blessing to carry – even for such a short time.

Meeting you was the happiest and saddest day of my life. Happy because I had waited for what felt like a long time to meet you...and sad because the time was so short. You are such a beautiful baby and are so loved.

Gabriel, your dad and I were so happy to spend the 100 minutes that we had with you. You were so peaceful and beautiful. I know that you are not suffering now where you are but I miss you so much. I miss feeling you moving and touching you through my tummy. I miss the nights lying in bed and talking to you.

I love you so much.

Mommy.

A follow up letter written to Aaron, in honour of his birthday...

June 19, 2017

Dear Aaron,

A year has passed since you were born. 365 days. A year ago, I was in labour with you during the early morning hours, bathed in the light of a full moon. The morning dawned bright and sunny and the birds were singing. We had planned to go for a church picnic in the park and I had made cookies to bring along. You had other plans. It was Father’s Day – what a day to be born. Your birthday was filled with such joy and such sorrow.

According to the medical world, you were incompatible with life. You surprised everyone by spending 100 precious minutes with us after birth. You met your older brother Gabriel and squirmed when he poked your eyes and nose. You stayed with us for another 20 minutes when Jodi (our amazing doula) turned on some of our favourite worship music. Songs that you danced to while I was pregnant with you. You passed away in my arms, loved and wanted. I wanted to memorize every detail of your tiny body; your little fingers and toes, your strawberry blonde hair and your lovely lips.

Shelley (our wonderful nurse) and I gave you a bath and dressed you. We spent time holding you and Veronique from Now I Lay Me Down to Sleep came to take photographs. After being at the hospital all day, we gave your body to Shelley and prepared to go home. I heard a newborn baby cry in the delivery room next door and that’s when it hit me. You weren’t coming home with us. Leaving the hospital without you was one of the hardest moments of my life. I had carried you, birthed you, held you as you left this world, and buried you, Aaron Isaiah Robert, all within eight short months.

The life that I live now is different than the life I lived before you were born. It’s like the watercolour painting that Gabriel brought home from play group. There are the pinks and yellows of vivid sunsets, the joy that comes with being alive to experience them. There are days that are as dark and black as the velvety night sky where the stars don’t seem to shine. Grief sometimes blankets me in darkness when I least expect it. However, I also experience love. Love for all of our children. I miss the future that will never be. Seeing you eat your first birthday cake, wiping frosting from your hands and hair. We had balloons at your memorial service last year to celebrate your birthday. This year we will visit the cemetery and leave a little gift for you.

The last year has taught me to really appreciate the support we have been given. We have the most amazing friends and families. We have received such an outpouring of support after your death. We have had many meals made for us and cards sent to remind us that we are not alone. We love more deeply and realize how precious and short life is and hold each other close.

We love you and will continue to love you for all the days of our lives.

Yours always,

Mommy

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.

How Aaron's butterfly run Ottawa/Gatineau came to be

6/16/2017

Rachel and Rob Samulack discussed organizing a walk in Ottawa for pregnancy and infant loss awareness after the loss of their son Aaron 100 minutes after birth on June 19, 2016 and the loss of their first pregnancy at 10 weeks in 2013.
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Rachel says "the goal was to have it be a community walk in Old Ottawa South from Sunnyside Wesleyan Church. We would walk with our friends and family members in October 2017 for Pregnancy and Infant Loss Awareness month. We asked a couple of friends who had also experienced this type of loss if they would be interested in organizing this type of event, they answered with a resounding yes. Our plan was to have a low key event... we would just tell people what time to show up and Rob and I would provide a couple of pizzas. We would walk to celebrate the lives of all of our children, those who are with us on earth and those who are with us in spirit. It was supposed to be something easy to organize."
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Fast forward to October 2016. Rachel found out about The Butterfly Run Quinte while sharing Aaron’s story on the Pregnancy and Infant Loss (PAIL) Network website. The run was organized to raise awareness about pregnancy and infant loss by bereaved moms Loralee, Beth and Barb in Belleville, Ontario. They received such an outpouring of support from their community. They raised over $75,000 for pregnancy and infant loss programs and resources in Quinte in their inaugural year of the run in 2016. And in 2017, Quinte hosted their second run and Peterborough, Ontario hosted their first! After hearing about the other Butterfly Runs, Aaron’s Butterfly Run Ottawa/Gatineau was created in January 2017. This year, the Butterfly Run Quinte raised over $100,000 for pregnancy and infant loss resources in Quinte and Rachel was able to participate in the run. It was quite the event to behold. It was so well organized and amazing to see the community rallying behind such an amazing cause.
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The organizing committee for Aaron's Butterfly Run decided to raise funds in 2017 for Roger Neilson House and we have been asked several times why we chose to have the funds go there. While there are other fundraising events for Roger Neilson House, the Perinatal Hospice and Perinatal Loss Support Group are one of only a handful of Perinatal Hospice and Perinatal Loss Support Groups in Canada. The Perinatal Hospice and the Perinatal Loss Support Group are services that have been offered since 2007 at Roger Neilson House at no cost for parents in Ottawa/Gatineau.
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Perinatal hospice (or perinatal palliative care) supports individuals and families who receive a life-limiting or life-ending diagnosis while pregnant by helping them plan for the baby’s birth, making preliminary medical decisions about care for the baby after delivery, providing emotional support for the individual/family, and assisting with memory-making such as photography. Palliative care follows the baby’s lead and can also include medical treatments to improve the baby’s life during pregnancy and after birth.
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The Perinatal hospice program first took place at Roger Neilson House in 2007 when a baby girl, known by her parents to have a chromosomal abnormality, was born with a life-limiting diagnosis and an expectation of death in early infancy. This family, referred to the palliative care team at Roger Neilson House, was cared for over months, in hospital, hospice and at home. She died in her parents arms on Christmas Eve. Her parents who had struggled in isolation during their pregnancy after receiving the devastating news could only say “we wish we had known about your program earlier”. 55 families have been referred through the Perinatal Hospice program since 2007. As one of the families who have benefited immensely from this program, Rob and Rachel wanted to find a way to say thank you to the team at Roger Neilson House for their ongoing support. Aaron’s Butterfly Run Ottawa/Gatineau is a labour of love.
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The Perinatal Loss Parent Bereavement Support Group is available to parents who have lost an infant to a stillbirth (over 20 weeks gestation), neonatal death up to the first 28 days of life, or medical termination or induction where a palliative diagnosis/pregnancy existed for the infant/mother. The group is facilitated by two Registered Social Work staff and takes place over eight weeks. The Perinatal Hospice and Perinatal Loss Bereavement Support groups have been offered without any additional budgetary support. The palliative care team provides care activities over many weeks and months and is available around the clock, 7 days a week, awaiting the birth of their precious patients and the professional work that is offered graciously often in the middle of the night to new parents, siblings and families. Roger Neilson House also holds events throughout the year to support parents - they offer yoga classes once a month and drop-in coffee sessions. The support that is offered by this team is truly amazing and we are so blessed to have a program like this in our community, available for families/individuals who need it.
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Rachel comments: "I’ll be honest. I would much rather be planning a first birthday party for Aaron than be organizing Aaron’s Butterfly Run. There are days where it is so hard to share our story. It’s still so fresh. There are still some days when I hide in the washroom and cry. Rob and I couldn’t have made it through the last year and a half without our amazing network of friends, family members and the team at Roger Neilson House. Our network has kept us fed, loved and supported both physically and emotionally. The run would not be happening without our amazing organizing committee. They have spent hours organizing the Film Night, Silent Auction, Paint Nite, and meeting to discuss logistics for the actual run. A big thank you to all of our supporters as Aaron’s Butterfly Run raises awareness for pregnancy and infant loss resources and programs in Ottawa/Gatineau."
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"Being a bereaved parent is not easy. It’s isolating and people are uncomfortable talking about it. Both sets of my grandparents lost children, one at ten days old and the other one as a toddler. One of my grandmothers also experienced multiple pregnancy losses and one of my aunts experienced a stillbirth. When they experienced their losses, there were no resources available to them and it’s something that was swept under the carpet. All of the members of our organizing committee have been affected by pregnancy and infant loss is some way. Unfortunately, pregnancy and infant loss happens. Aaron’s Butterfly Run is more than a fundraiser for Roger Neilson House. It’s a space for bereaved parents to find the resources and community that they so desperately need in the days and years that follow their loss(es). We are so blessed to have access to a place like Roger Neilson House and Rob and I are truly honored to be able to share Aaron’s story with anyone who is willing to listen. We can only hope that we have provided support and resources to others who will need it in the future."
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As Aaron’s birthday approaches, Rob and Rachel have created "Team Aaron" as part of Aaron's Butterfly Run Ottawa/Gatineau to raise funds for the Perinatal Hospice and Perinatal Loss Support Group at Roger Neilson House. You could support Team Aaron here: https://osf.akaraisin.com/pledge/Participant/Home.aspx?seid=14130&mid=9&pid=3366988
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Please consider registering for the run on Saturday, October 14th 2017 or donating in memory of a butterfly baby: www.butterflyrunottawa.ca/sign-up
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Thank you!
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#miscarriage #infantloss #1in4 #aaronsbutterflyrun #butterflyrun #thebutterflyrun #butterflybabies #myottawa #ottawa #gatineau #grief #loss #perinatalloss #perinatalhospice #pregnancyloss #miscarriagesucks #infertilitysucks #infertility #1in6 #run #runottawa #runottawa2017 #fathersday #bereavedfather

Guys & Grief

6/15/2017

Father's Day is coming up on Sunday June 18th, 2017. To all the bereaved fathers, we're thinking of you.

In advance of that, we wanted to share with you a recent article written by the Love & Loss Project about "Guys and Grief" - the Love & Loss Project shares 3 tips for supporting bereaved fathers.

To come up with these 3 tips, the Love & Loss Project interviewed Mr. Kelly Farley, author of Grieving Dads: to the Brink and Back. After experiencing 2 of his own losses through miscarriage, Kelly interviewed almost 1,000 other bereaved fathers to better understand the male experience of grief.

"I often talk about the invisibility surrounding women’s experience of losing a baby. However, I believe this invisibility is even more extreme for fathers. Their experience of grief within their social circles is often reduced down to the role of the supporter for their partner, where often the discussion with friends and family focuses on the female partner, 'how she is doing' and encouraging him to 'take care of her'."

Thank you to the Love & Loss Project and Grieving Dads for raising awareness about pregnancy and infant loss, and not forgetting about the male experience.

Recap of our Paint Nite

6/12/2017

Sparkling conversation, splashes of paint, and savouring sweet treats were the perfect combination for a night out on Monday, June 12th, 2017! It was also an opportunity to support the estimated one in four women in Ottawa/Gatineau who have or will experience pregnancy or infant loss.

Thank you to everyone who joined us for this sold-out event. From your support, we were able to raise $600 to directly support the cost of the Run. We're fundraising to support the cost of the Run itself (to cover the cost of things like race kits), because 100% of your registration to the Run on October 14th will go directly to Roger Neilson House, a program of the Children's Hospital of Eastern Ontario (CHEO).

Thank you to our awesome instructor, Ena Lucia Mariaca, who led us through a very fun evening of painting! Thank you also to Oh So Good Dessert and Coffee House at 261 Richmond Road where in between brush strokes, were were able to nibble on our favourite goodies from their wide selection of delicious desserts!

Thank You Mom Friends

6/9/2017

Yesterday, our friends at "Mom Friends" shared a blog post about their participation in our Silent Auction and the 100In1Day festival. We so very much appreciate businesses and community members who've adamantly supported our cause to raise awareness and proceeds for pregnancy loss, infant loss and infertility in Ottawa and Gatineau. Thank you Mom Friends!

Also, take a minute to check out the important work they do in our community - they provide postpartum care kits to new moms.

The Hardest QUestion

6/8/2017

You might remember our previous post, where Margaret, one of the volunteers for Aaron's Butterfly Run Ottawa/Gatineau, shared the letter she wrote to her son Matthew, who was stillborn at 26 weeks. Margaret also experienced two first trimester miscarriages before her last child was born.

Margaret shared with us some more of her thoughts around miscarriage and infant loss (also known as perinatal loss), which she summarizes as "the hardest question" - Read more below...

For the last eight years, the hardest question to answer has been, “how many children do you have?” It is so innocent. Such an icebreaker. Strangers ask me all the time in the grocery store line-up, at the park, the hairdresser, the dentist. All the smiling people looking at me with expectation while I do this mental calculation.
         ‘What mood am I in?’
         ‘Do I feel like being sad or making this person uncomfortable?’
         And more importantly: ‘Will I have to see them again?’

Frequently in the grocery store or other places where I expect to never see the person again, I answer “Three.” But I always feel like it is a betrayal of the truth, of my firstborn son, my Matthew, stillborn at 26 weeks, and the two first trimester miscarriages I had before my last was born.

Occasionally I tell the whole story, but I can’t always stand the pity and the awkwardness. Most of the time, I am just in a hurry. I need to get this chore done because the demands of my three living children keep me pretty busy.

The new complicating factor is my six-year-old daughter who is admirably dedicated to honesty. If she ever hears me answer, “three,” she corrects me, “No, mommy, four. What about Matthew?”

I’ve always told my children about their older brother. We visit his grave. We take care of the flowering bush we planted by his headstone and we pluck the dandelions that grow in the grass around his resting place. We do the little things we can instead of taking care of the child we wanted.

I do feel a responsibility to answer this question honestly because I felt so caught off guard when I learned my pregnancy wasn’t going well that first time. It was only after that bad news ultrasound that the stories of grief and loss came out. I had no idea that pregnancy and infant loss was so common and in a way I felt betrayed by that. If we had a more open conversation about loss, perhaps I wouldn’t have been so blindsided. When I deny the truth of my son and my grief, I am doing the same thing to the women and men around me. I am leaving them unprepared for the possibility of pregnancy and infant loss. I am abandoning them to a situation where they will feel alone, where they won’t know that resources exist, where they won’t know they have a friend to whom they can talk openly. Which is why if I think the person asking the question, “How many children do you have?” is someone I might see again, I try to tell them the truth in a way that lets them know it is common, it is a part of life and it isn’t fresh anymore so if you need to talk I actually feel like I have some capacity to do that now. If you want to talk, or if in the future you ever need to talk, you know you will have a compassionate, listening ear and you are not ever alone.

Thank you Margaret, for sharing your thoughts on perinatal loss.

Resource Highlight: The Love & Loss Project

6/1/2017

Experiencing the loss of pregnancy, a baby or a child is a devastating and life-altering experience, to say the least. As awful as the journey is, know that you are not alone and there are a variety of resources available to support you.

One of the great resources that recently came to our attention is The Love & Loss Project. The Love & Loss Project is a comfort and inspiration station for people who have lost a baby, pregnancy or child.

Services are offered by April Boyd, a Social Work Therapist from Belleville, Ontario. April has supported thousands of people over the past decade through grief, loss, trauma and tragedy, but her work took on new levels of meaning and purpose after her daughter Nora passed away unexpectedly when she was one day old. You can read more about April's story here.

April offers a variety of services to support those experiencing perinatal loss, including a Baby Loss Survival Guide.

Often times, the financial cost of support services can be a barrier to seeking help, but counselling services are often claimable/reimbursable via your workplace. April recommends checking with your Employee Assistance Program (EAP), but often, programs like this can be covered under your workplace EAP program or your workplace benefits.

Thank you April for donating to our Silent Auction in support of Aaron's Butterfly Run Ottawa/Gatineau! If you're interested in the Baby Loss Survival Guide, you can have a chance to bid on it during our online, Facebook-based, Silent Auction June 2-3, 2017.

For other perinatal loss and infertility support resources, check out our Resources page.