Grieving the Firsts That Never Came | Butterfly Wings and the Loss of a Baby

Hello, everyone. It's Eric here from Love the North, and today we have Colleen and Annie from(...) Butterfly Wings, Perinatal Bereavement Services. Good to see you this morning. Thank you for having us. Good morning. No problem.

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Okay. So, the next question is,(...) what is Butterfly, Perinatal Bereavement Services, and who's it for? So, Butterfly Wings, Perinatal Bereavement Services, we're a nonprofit organization. We've been in several for about 15 years. We provide grief support services and education. We create awareness for pregnancy and infant loss. So, for families that have experienced the death of a baby through early pregnancy loss, stillbirth, and infant death. Okay.

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What inspired the creation?

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I was the founder of the organization. I started it after I had a lot of my own losses. My husband and I, we had eight losses.

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Most were early losses, so that's within the first 20 weeks of pregnancy. So, within the first trimester? We had a second trimester loss.

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It was during those times, some were pretty traumatic.(...) There was one, it was a 24-hour period that was absolutely horrible. We did see our baby.

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We had been given hope during that day that everything was going to work out six hours later. It didn't work out.(...) The next day, I just remember being at home and I just felt so alone, so isolated.

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The idea started from there, just gradually(...) decided that families in subgroups should have some type of support, some place to go to be with other families experiencing losses. Right. Okay.

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So, who can access it and how do they access it, the support?

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Anyone that's experienced a loss, so again, early pregnancy loss, stillbirth, infant death,

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families, members, sometimes there's grandparents, some of the siblings, aunts and uncles, anyone can(...) access it if they're needing support, if they're struggling with the grieving process or if they just want to be around other families that understand that type of loss. So, it's not just for the mother and partner itself, it's for the whole family? Absolutely. Okay.

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When(...) it comes to losing a baby, what do you wish more people would actually understand?

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That's a really good question. That's a good question. I think one of the things is a lot of times(...) people minimize the loss, they think, "Well, you didn't know your baby so." Right. It's not a big deal. They'll think, "Well, the life was so short, so(...) you really shouldn't breathe for that long." And I think what people don't understand is when you lose a baby, we call it at our organization, you're grieving forward. So, you're grieving everything you didn't get to have with that child. Okay. So, you don't get that first smile, that first step, that first birthday, first day of school. First everything. First everything. So, parents are grieving forward lifelong. So, they never forget about the baby. Their baby's never gone from their thoughts and their life is significantly impacted. They're changed. Well, it's a part of them. It's part of the mother, so when you,(...) let alone you lose anything, you're losing a part of yourself.

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Absolutely. And I think it's one of the hardest losses that people can(...) endure.

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So, you usually see life before and after. It becomes this traumatic,(...) this hard line of "by life before and then everything's changed." And then we, you know, because of our lived experience, we like to guide them into how to navigate that life after. Because it's not easy and it's not talked about that openly.

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So,(...) when a loss happens in early pregnancy, what do parents feel that others don't always understand? Like, you know, the loss is...(...) It's huge. It's huge. But(...) I think it's probably like you said that not everyone(...) looks at the bigger picture and the connection between mother and child. And father. And father. And grandparents. All of them have different connections to that child. Yeah, and especially, like you said, if(...) you're grieving forward, you're losing out on what you had wanted, that first of everything. Throughout that child's life.

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When people first reach out to you,(...) what happens when a parent first reaches out and makes contact?

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Well,(...) usually myself, I'll be the one that will call them. We'll talk to them. We'll discuss what exactly they're looking for. Because everyone's different in the type of support they want. Some want individual support.(...) Some want group support. Some will only attend our events. They want to be around some of the events. We try to create opportunities for families to gather together. So, we always go with where the parent is at and what they're looking for and what kind of support they want. Now, isn't there an event today? There is. Today is October 15th, which is pregnancy and infant loss awareness day. Okay. So, there's something called the International Wave of Light. It happens in all countries, all over the world. Between 7 and 8 o'clock in each time zone, people are asked to light a candle. And that will represent the babies that are gone too soon. So, tonight we have our wave of light. Probably when this is airing, it will be going on.(...) And families will gather tonight with us. And we'll light a candle between 7 and 8 o'clock. We have speakers. And then for us, we end our wave of light with a memorial video. So, it gives parents the opportunity to have their baby shine that night. So, we have a video. Right now we have about 125 slides. Uh-huh. We have. And each slide represents a baby. And people, parents can send in pictures or whatever they want. And we have a mom who creates the most beautiful slides to honor these babies. And that's how we end the night with(...) our memorial slide. So, where is this event happening?

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Can you pronounce the name of the tree? I would, I would not do a good job. You'd probably butcher it? St. Anne de Payne? St. Anne de Payne. And where is that? That is downtown. It's on Beach Street. Beach Street. Oh, that's right by the mall. Yes, right behind the line. Okay. Yeah, where the stairs go up. Yeah. Pine trees. Yeah. And this event is just, it's like the kindest thing that we can do for ourselves to have this community come together and just live that grief openly and to be able to cry and not feel like we'll be judged or you know, get those messages of, well, it's been six months. You should be over it. Oh, that might, no. Or you can try again. So, we believe there's no timeline to this kind of grief. Yeah. But to have the community together is such a powerful, the MGA is so beautiful. And we even have people from the community that come in. We have funeral directors and(...) things like that. So, to bring everyone together for this one time is such a powerful thing because of the rest of the time, they are mainly grieving by themselves in silence. And a lot of the times, our grief makes other people uncomfortable. You know, so to have that opportunity offered to our families for us is just the biggest gift we can give them. And our wave of light has really grown. Our first one, Annie was part of our first one. We had borrowed a chef's(...) little office space in the basement of a place. There was 10 of us. Yeah. And now we're over 100. Okay. That's been an event. So, what would you say to someone who feels that their loss doesn't qualify, like they feel like their loss doesn't qualify? What would you say to them?(...) Every life matters. Every baby matters. Their grief is important. Their grief matters. And we see that a lot with families that have experienced an early pregnancy loss. They sometimes go, "Well, this person had a stillbirth. This person, you know, gave birth." And they'll minimize their own losses. And what we're trying to teach them is know your grief matters. Your baby was wanted. The minute you can see that line on a pregnancy test, you have that whole future. Yeah. And your whole life changes. Yeah. Coming back to that first birthday, first day of school, first diaper change. Exactly. You know, holding the baby against the mother's skin. Mm-hmm. You know, everything right from the very first of everything. Yeah.

When it comes to the grieving, are there any comments that well-meaning people should have? Or should really avoid? That could be a trigger.

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We have a special jar in our groups, and I won't give you the name of it. It's probably not good to say it on here. But we do have a special jar that if comments are made... We expect cliches. But we're in a better place now. God, we did another angel. Right.

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We just tend to kind of dismiss them. Sometimes people make comments that just we don't even know how they can say such a thing. It really hurts, and it further traumatizes the parent to hear those things. Like, let's say you were working too hard, or you didn't eat the right things. Like, just... Oh, yeah. It's not based in any scientific research. You know, it's just things that we say as a reflect.

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But if we were to be curious as to what happened instead of coming from a place of judgment or criticism, we would understand that this is very common, right? The stats are one out of every four pregnancy ends in the lost. So, you know, there's three of us here, so right there, you know, it's just to say it's something that happens quite a bit. But those comments can be very, very negatively impacting those people. And it's just to, you know, if you don't know what to say, it's better not to say anything than to just try to make them feel better and maybe miss that mark and further hurt them. And they bring those comments to group, and they'll write them out, they'll put them in our special jar, and we will burn them. Okay. That's my goal, if you do that.

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How can partners support each other while, you know, when grieving for the loss of either, you know, an unborn child, a stillborn, or even a child that loses, you know, doesn't make it to the first year mark? How can they support each other? That's very tough for partners to support each other, especially if they're both experiencing the grief. I think it's important that both recognize that they're going to grief differently.

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If the grief is too overwhelming, sometimes they need to get support outside of their marriage because they're not in a position to support each other. But I think it's mostly(...) validating just being there for one another,(...) helping each other, listening.

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Yeah, yeah. Talking about it. Talking about it. Having that free space to be able to talk about your baby, say their names. Right.(...) That can(...) be really powerful, especially if you had a name(...) or two or three picked out, and then, you know, especially looking forward to all those moments. Yes. Yeah.

So when moving on, what emotional challenges can occur when(...) considering another pregnancy?

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There can be lots of challenges. We do provide that support for people that have a subsequent pregnancy. There tends to be a lot of anxiety. And the innocence of pregnancy is gone. So people around them may expect them to be happy in celebrating that they're pregnant, but a lot of times they are full of fear. So we try to help and support them through that pregnancy. There's really not a lot people can do to take away that fear from them, but just to be there, support them, listen to them.

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You know, in a naive kind of way, it's like that bicycle. When you're driving your bike, you fall off as a kid, you got to get right back on. But, you know, this is a much more deeper subject than just riding a bike. Well, I think I would add, like Colleen was saying, her situation was very traumatic, and so was mine too. With my loss, I almost also did not survive. So then you're thinking, you know, to try again potentially means, you know, having some sort of our own safety being jeopardized if we already have children or, you know. So there's just the mother's health needs to be looked after very carefully. And that's also part of the, you know, the medical system, the doctors, midwives and so on. We are hoping that with our health, they'll be also aware of keeping a close eye on those parents to look at their mental health and seeing how do they need to be supported.(...) So that's where we are also very able to say, this is how you advocate for yourself. Because that's important in a situation where you've had no control over the outcome to after saying, okay, I'm going to, you know, give this another try, but then be able to advocate for yourself. So huge, right? So what does pregnancy and infant loss awareness day mean(...) to those families that you support?

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I think it's a day where they can feel even more free to be able to share their baby. Even this morning, I could see a lot of our families, we're worried away they're posting pictures of their baby. They're telling their stories of their baby. So it's almost like they feel like society today is giving them permission. Right. Whereas we want to obviously break that. We want them to be able to feel they can talk about their babies all the time whenever they want. Yeah, yeah, it's,(...) you know, I think of it as it's still a family member, whether they're with you or maybe not with you. It's still still part of the family.(...) And they can feel like(...) the world like with the wave of light, they'll feel like communities are honoring their babies too. So are there any other events during the year where,(...) you know, they can remember their their their young child(...) other than on October the 15th? That's the official pregnancy and infant loss awareness day. We try to create opportunities for parents. Like there's not another day that's specifically recognized.(...) We do have bereaved Mother's Day, which is the Sunday before(...) Mother's Day. Okay. We do flower deliveries. So if we have somebody's name and address and we know they've had a loss, they will receive a little flower from us that day.

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We do our remembrance height note so that families can gather together. Remember their baby, walk through some beautiful trails. Yeah. We do a butterfly release. So again, that's another opportunity for families to gather. Remember their baby publicly.(...) There's been so much fun stuff. We do Family Bolding Day just to get families together. Yeah. Yeah. To help them(...) through their process, through their journey. Yeah. And then families are really good at creating ways to honor and remember their babies. A lot of them will have weighted bears. Annie actually has a little shot that makes them. They'll go get the bears made in the weight of their baby at birth. So they'll find those ways. And then we have one family that will buy clothes and just always just make sure that baby's part of the family. Yeah. To just birthdays. Oh, tattoos are huge. Tattoos. We all have our own. Okay. The butterflies, there they are.

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But like the birthdays. Birthdays. We celebrate the birthday or the angel first tree or. Yeah. Yeah. Every month at group, we honor the babies that were born that month with birthday cake and we sing.

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Okay.

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To anyone that's quietly grieving alone, what would you say to them? What would you want to say to them?

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They're not alone. That there is support. They can reach out. Some people do choose to grieve silently. Like there will be people that will be at home watching our live stream tonight. Right. Because they don't want to come into that a big formal setting. Yeah. But if they do need that support, that help to reach out. They don't have to walk this path alone. So how are you getting your message out to everyone? We can help you get the message out.

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Aside from that, how have in the past, how have you been able to get your message out to those who are grieving and let them know that your organization is there to help them?

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Usually through social media. Yeah. And we will share our information with the local medical professionals. Okay. So the hospital. Yeah. Yeah. Female homes.

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Absolutely.

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What's the best way to contact(...) Butterfly Wings? Is it pick up the phone, send an email, maybe send a message on social media? What's the best way? I think all three of those work. All three? Anyone? Three of them are fine. Yeah. Okay.

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In wrapping up, any last words that you want to cover and let everyone know?

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Oh, yes. This is the candle that we will be lighting tonight at our wave of light. Okay. Every year, you'll see there's a little charm on this candle. Yeah. This one this year is going to be a ladybug. What we do is if families want to put their name in for a random draw once a year, this candle represents the baby. Each family usually has some type of symbol that they use to represent the baby. It could be a dragonfly, a star, a heart. We've had moons. We've had ... So each year, they get a charm that's attached to it, and we give them a bracelet, and they just collect the charms each year. So this year, we have a ladybug. And so everyone in the community, if you've experienced a loss or if you know someone that's experienced a loss, if you could light a candle tonight between seven and eight in your time zone to honor and remember those little lives. Okay. Annie, any last words? No, same thing just along the way, along the lines too, is to include the whole family of your age. Yeah. Children too. I think a big part of our message is to also teach proper grieving strategies to children, and that there's ... You're not going to go through life without experiencing grief at some point. Right. As a pet, a loved one, etc. So to have the children part of that is okay, and it usually helps them grow and become even more compassionate little people. Right. So the candle lighting involved the children, often they're doing little crafts at the same time. They have their own little ways, their own little relationships sometimes with the soul or the baby that's past.

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For us, it's just as much as that grief can be witnessed, it's one of the things we know in psychotherapy too. Grief needs to be witnessed to be able to be processed and healed and integrated. So as much as possible to find a safe, trusted person to walk that with you.

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Okay. Well, Colleen, Annie, thanks for joining us from(...) Butterfly Wings Perinatal Bereavement Services. And we'll get this out as soon as

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