The Grief That Never Goes Away: Two Mothers Share Their Stories of Losing a Child | Butterfly Wings

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Butterfly Perinatal Bereavement Services. Today we have Angel and Julie here in the studio with us. They are both team members of Butterfly. And good to see you. Good to see you. Okay. Angel, how did you get(...) started? What's your story?

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Well, my story is I(...) had a beautiful little girl named Tia.

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She was born with hydrogen and cephalae. So without my knowledge, she had an immunod but to our surprise, she lived for 21 days. Okay.

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So you got to spend time with her for 21 days and then(...) that was the end of her short life? Short life.

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How did that affect you?

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How(...) did that affect your family?

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It was pretty tough on the whole family, on my husband and I. Yeah.

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We had a two-year-old son at home. Okay. When she passed away, though,(...) for me, I was very thankful to have him because(...) of him. I had to get up every morning to take care of him.

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I'm not sure(...) what would have happened if I didn't have him.

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My husband at the beginning would, you know,(...) encourage me to get out of bed, get out of the house, and just,(...) you know, just not sit there and think about it all the time, which is really hard not to do.

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I threw myself into books and to trying to find a reason of the why. Why did it happen? Why did she have a stroke? Did I cause this with the stress I was living through, the pregnancy? Was this my fault? So all these questions go through your mind when you lose a(...) baby.

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Julie, how did you get(...) into the Butterfly Perennial Bereavement Services organization? So I suffered my last 10 years ago. My son's name was Parker, and he was diagnosed with mvalecil, which is a birth defect of the stomach, when I was five months pregnant. But we were assured through multiple visits to sick kids and with professionals that they'd dealt with this before. And it would be a long process, but that he would survive and everything would be fine.

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So unfortunately, that's not what happened. And when he became in distress at one point, a tube was placed in a stroke that was too big for him. And so unfortunately, it damaged his lungs, and a week later, he passed away.

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And so,(...) Rajal actually received the email because all of my staff members were at work, and they knew that we were in hospital and stuff like that. And she was told not to open her email because it could be a trigger for her. But she did. And I'm thankful that she did and that she's the one who kind of took the lead on that. And she came to see me after to bring me a very thoughtful gift, a very appropriate gift, a necklace, and something for my daughter to wear, and my husband as well. And she's the one who introduced me to butterfly wings by saying, hey, you know, like, if you're feeling up to it, there's this group called butterfly wings. And I'm going to be going to a meeting soon. So if you want to join me, you know, we can go together.

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I wasn't sure at first if that's something that I wanted to do. It was still very fresh and I was still just trying to navigate, you know, daily life. But I took her up on it and I'm glad that I did because it was really what I needed without knowing it at the time. Although that first session, I do have to say the entire time I was half off my chair. I don't know if I can do this. This is very intimate. These people are saying some things. I don't know. Like, you know, this is really tough. And I just want to cry right now. And it's embarrassing. But then I realized as time went on, I was like, this is exactly where I need to be because there's nobody in this room that is judging me. There's nobody in this room that's going to say things that are going to be hurtful or that are going to tell me to get over it because we're all living the exact same thing.(...) And it's what I needed because I was surrounded by people in my environment that weren't promoting that type of message. That, you know, we're saying we just get up and move on and get over it. And I wasn't in any kind of shape to be doing that.

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Did you go alone or did you go with any other family members? No, I went and found out.(...) And she and I became that support for each other for multiple years now. And it's become something that we do together as two proud moms who just want to, you know,(...) promote this wonderful organization that is here to help everybody and to just continue to keep the love alive for our children.

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So the(...) support was basically, it was paramount to you being able to(...) work through your feelings and your emotions and everything else(...) that(...) was actually happening.(...) Yeah, so I don't know them by heart, but there are stages of grief.

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You know, you're angry at first and then you put the blame on other people or...

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Yeah, there's so many ways. Just there to(...) help each other go through those stages. Like, it's okay to be angry. You know, people would come in and say, like, I'm angry. I'm angry at the world. But that's okay. You need to go through those stages(...) to be able to(...) become your new self.

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We call it the new normal, that matter of fact, because it really, really turns you upside down. It really changes. And what you saw as normal before is no longer normal. Everything feels off.(...) If there's one thing I can say about this entire thing that's been extremely difficult is I'm a completely different person. And at one point, you know, I was so thick in the grief and it just felt like I was never going to see the light of day. And my husband even said at one point, like, I need my wife back. Like, what is happening? And I was like, I don't know. I don't know how to fix this. I don't know how to feel better. I don't know how to stop crying. I don't know how to not want to be in bed every day. And like, I'm so grateful. I had a three year old, three and a half year old daughter and she's what got me out of bed. Otherwise, I don't know that I would have had a reason to get out of bed. It was extremely traumatic. It was extremely,(...) you know, heartbreaking. And it left a gaping hole in my heart that will never be filled. You know, I can't ever fill that.(...) So, yeah, just(...) there's nothing like it. Like I've gone through other losses and it's stuff that has not.(...) I don't want to say it ruined my life, but it kind of ruined my life. Like, I don't want to say it like that, but everything kind of became tainted with gray. And even now, like I said, 10 years in, it's nothing for me to ball my eyes out. Just sitting there thinking about it. It'll still come in a huge wave because I still feel the exact same way. And it's like time stood still when they passed. The rest of the world keeps going. But it feels like just yesterday that we were holding them. Like I can still remember how he smells. I can remember the softness of his hair. I remember the harshness of the hospital lights, the beeping, that everything is still so vivid. And when I walk into a hospital, it floods me in a very negative way because it's still so raw. And I always thought time would be the thing that would help because normally that's what they tell you, right? Time's going to heal the wounds. It's going to get better. This is not like that at all. Very different. For me, I dread October. I hate the month of October.

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Matteo was born on the 10th(...) and she passed away on Halloween day.

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Halloween is tough. When you have(...) kids at home or you teach junior kindergarten, you need to be there on Halloween day for them. So it's really difficult.(...) My heart's in knots the whole month.

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So what would you want to say to other moms that have lost their little ones, whether in utero or(...) very shortly thereafter? What would you say to them about maybe being on the fence, about even reaching out for support that they desperately might need? It's a sense of community. We're a community. We're a family. Butterfly wings, we(...) are there to support one another, to listen to one another, to just sit beside one another when needed.

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Whether(...) it's doing a craft together or going on a hike or just being surrounded by people who understand you and not being judged.

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That's what butterfly wings is all about.

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I'd say for sure,(...) hesitate. Absolutely. I did.(...) There's something very vulnerable about putting yourself out there like that and sharing that kind of information. But I think the thing I appreciate the most about the organization is that there is no judgment. You're never going to get those comments that you get from people who don't understand. There's moms that have gone through this who are not going to come to you and be like, "Well, it's okay. You can have another one."(...) "Oh, well, at least you got to meet him." When I got that comment, I was just like, "Okay, well, you got to meet your kids. So let's pack a bag and let's send them up to heaven. All right, so are you good? Because I'm not." In that sense, you're not going to get comments like that. I think that's what feels good is that when you're in an environment where you don't know what the waters are like, you're kind of on edge as to what people are going to say if you bring it up. But when you bring it up with butterfly wings, people are going to want to talk to you about it. They're going to want to share their story. And it feels good to be able to say their name without getting looks of like, "Oh, she's still in that stage." Or, "It's been so much time. Really, she should be over it by now." You don't get that. And I think that's the important part is that sense of acceptance, that sense of, you know, "I'm in a safe place where I can be me and I can talk about my kid as much as I want and nobody's going to tell me to stop." That's right. We have this jar at butterfly wings. And I'm not going to say the name of the jar because it's not very(...) appropriate. But(...) when you receive a comment like that from a family member or a friend, you come to butterfly wings, you write this comment on this piece of paper, and you put it in the jar. And at the end of the year, at one point in the year, we will burn all these messages and they'll just... It's therapeutic. They'll be gone. And I mean, I don't want to take that the wrong. People are making these comments from a place of love. They are. They think that they're saying something that is supporting you. They do because they don't know what to say because it's such an awkward thing to say. And I appreciate that, but at the same time, sometimes I feel like I would rather just get a, "I'm so sorry for your loss," and a hug and let's call it a day. Because if I'm being honest, no matter how much you dig inside yourself, there's absolutely nothing that you can say to me that's going to take my pain away. There's nothing you can say that's going to bring him back, and there's nothing that's going to change my circumstance. So I would much rather have no comment than have a comment that jabs me, even though I know that's not your intent. It just leaves me with a sour taste in my mouth. And I just, I'd rather not have that comment.

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Anything you want to say in wrapping up?

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You know, for,(...) again, anyone who's wondering about coming in, because it seems to be quite a common occurrence out there,

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is it really one in four? One in four. Okay, and that's really high. So you look at all the munchkins that are running around out there, and you think there's another 25% that are missing. Yeah,(...) which is 25% of parents that are walking around with a gaping hole in their heart that you don't see. There's no little, imagine if we were walking around with little thought bubbles and all the broken hearts you would see if you were walking in the community. No, honestly, it would be overwhelming, right? And I think we learn to just live with it, hide it so well. Everybody's like, "Oh, they're doing really well." And I'm not saying we're not. I've always said that we would be the Emmy Award winners for, you know, for putting on the show. Oh, absolutely. We're great. Like, on the worst of days, we're so good at faking it. It's amazing. Oh, yeah, award winners.

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Julie, Angel, thanks for coming

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