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.
. 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." . 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. . 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. . 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. . 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. . 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. . 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." . "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." . 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 . Please consider registering for the run on Saturday, October 14th 2017 or donating in memory of a butterfly baby: www.butterflyrunottawa.ca/sign-up . Thank you! .⠀ .⠀ .⠀ .⠀ #miscarriage #infantloss #1in4 #aaronsbutterflyrun #butterflyrun #thebutterflyrun #butterflybabies #myottawa #ottawa #gatineau #grief #loss #perinatalloss #perinatalhospice #pregnancyloss #miscarriagesucks #infertilitysucks #infertility #1in6 #run #runottawa #runottawa2017 #fathersday #bereavedfather Comments are closed.
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