Bereaved But Still Me

Landscape of Loss

Jen Burgard Season 7 Episode 1

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How can a mother handle losing a baby? What happened to Jen Burgard after she lost her son, Henry? Why did Jen start a podcast?
 
 This episode features Jen Burgard...
 
 A native of the upper Midwest, Jen Burgard is a mom to two living children and one who lives solely in her heart. Her titles include loss mom, living mom, wife, founder, podcaster, director, and most proudly - survivor. 

Upon the death of her second child, she set out to fill a gap in accessibility to resources, support and community for others also experiencing trauma. With personal experience of her own and her newly formed network she launched Haven as a service to grieving parents in and around her region. 

Today, Haven has touched each of the 50 states with their healing gifts, podcast content, and online grief workshops. With a goal to bring awareness and understanding not only to child loss, but our grief culture in general, we are creating and building conversations around the vast Landscape of Loss. 

Jen’s Links:

www.havenmidwest.org

facebook.com/havenmidwest

instagram.com/havenmidwest

jen@havenmidwest.org


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Jen Burgard:

We did everything we could in that one single day. Every memory, memorized his face memorized his scent, how he felt in our arms, and just gave him kisses and hugs. And he took his last breath just in my arms.

Michael Liben:

Welcome to"Bereaved But Still Me". Our purpose is to empower members of our community. I'm Michael Liben, and the father of three children: Idan, Sapir, and Liel. Liel, my youngest daughter, was born with a heart defect and later developed autism and epilepsy. Losing her 15 is what has brought me here to be the host of this program. Sometimes loss or trauma can spur us on to great things. Today our guest is Jen Burgard. Jen is one of those people who rose from her grief, empowered to help others learn from her experience, and to reach out a hand to those who seek help. A native of the Upper Midwest, Jen Burgard is a mom to two living children, and one who lives solely in her heart. Her titles include loss mom, living mom, life founder, podcaster, director, and, most proudly, survivor. Upon the death of her second child, she set out to fill a gap in accessibility to resources, support, and community for others also experiencing trauma. With personal experience of her own, and her newly formed network, she launched "Haven" as a service to grieving parents in and around her region. Today, Haven has touched each of the 50 states with their healing gifts, podcast content, and online grief workshops. With a goal to bring awareness and understanding not only to child loss, but our grief culture in general. They are creating and building conversations surrounding the vast landscape of loss. Jen Burgard, thank you so much for joining us on"Bereaved But Still Me".

Jen Burgard:

Thank you so much for having me.

Michael Liben:

Why don't we start off by you telling us a little bit about your son, Henry.

Jen Burgard:

In 2016, I was pregnant, eagerly looking forward to having my second child, a little boy, thinking I'm completing my little nuclear family. And it was a relatively normal pregnancy and I did the room, I did the nursery, I had all the clothes laid out, and all the specific months and everything set up. I had our birth pictures setup, ready to roll and then the morning of April 4th of 2017, I was exactly 39 weeks pregnant and I had a routine office visit with my physician just a couple hours away. And I was getting my daughter breakfast, and I felt tired and I just sat down to take a rest because you know, at 39 weeks, it's it's a lot. And I was tired.

Michael Liben:

I'll take your word for it.

Jen Burgard:

Yeah. But as soon as I sat down, I just felt, oh, that's better, that's what I needed to do. But moments later, I looked up at my husband, I said, "Oh my gosh, my water broke, my water broke". This is it! Oh my gosh, I was so excited, right? Because I was gonna get to go into labor naturally and that's what I really wanted. And it wasn't until I went into the bathroom when I realized what had happened. And there was just a lot more blood than I thought should have been present and I actually ended up passing out. And a lot happened between that moment and getting to the hospital, of course, we rushed to there. And we were checked in and got everything set up and they they started to look at what was going on with baby and I said, "I'm just, I'm not feeling well, I'm losing consciousness and this is odd". And they found a flicker of a heartbeat, they said, on the ultrasound. And so within minutes, I was rushed to an emergency C section. And I actually will never forget this moment in such a traumatic event, it was honestly comical to me because as I was laying there on the stretcher in the operating room, a place I'd never been in my life and I'm laying there and they're prepping me for surgery and everyone's running around. The surgeon said, "Is she asleep? Are we going?" Right?

Michael Liben:

That's one of those things you don't really want to hear.

Jen Burgard:

I didn't want to hear that.

Michael Liben:

Oops tops the list. But you don't want to hear that. Yeah, yeah.

Jen Burgard:

And the anesthesiologist said, "I don't even have the mask on her" and I'm like oh my goodness, what is going on? And in moments the mask was on and I was out. I think back to that and I do laugh but I woke up alone in a recovery room. It felt like a closet, it was odd. You're groggy when you wake up from anesthesia if you've been there and finally I asked the nurse - she wasn't making any eye contact with me at all. So I just thought that was strange and so finally I said, "Where's my husband?" He said, "Well, we'll go get him we'll go get him". I said, "Okay". So they went and got him. He came back and he just said to me, "Honey, we're not going to get to take him home". That's it. I didn't know what that meant. I don't think I had the energy to even respond to that. I was in shock. And I was tired. And so I just laid my head back and I said,"Okay, what, what, what next?" Well, my son had been delivered, but he had not received enough oxygen during that time and so he wasn't going to make it. So they brought him to me and he was hooked up to all kinds of tubes and he was breathing with the help of that. But they said,"We know, every test, everything's been done, this isn't going to happen". And so...

Michael Liben:

Were they already talking about brain damage were they talking about brain damage with him?

Jen Burgard:

Yep, he had sustained incredible amounts of brain damage. And from what they could tell, there was no chance no hope. They said he could live for minutes or hours, it just depended. Finally, we did remove his breathing tubes, because it seemed to bothering him. And then he actually lived with us for over 12 hours. He was such a little fighter. And we just, we did everything we could in that one single day. Every memory, memorized his face, memorized his scent, how he felt in our arms, and just gave him kisses and hugs and he took his last breath just in my arms, and we cried. And that was it. And then we had to leave. And we had to leave him there. And it it was transformational. Because my entire world stopped. It stopped. I looked outside and I just thought, how was the sun shining? What? Why were people just walking around drinking iced coffees and driving. I just I was lost. And I remember thinking, you know, everyone kept saying this doesn't happen. This doesn't happen. That this is so rare. So sorry, we can't believe this happened. So I believed that, I believed that that was true. And so I went home with an empty car seat in the back of my car thinking, oh my God, I'm like the only person that has ever happened to? What? I mean, what year is it, from what I knew nothing was wrong. I found out later what had happened is I had a complete placental abruption, which is where your placenta detaches completely from your body.

Michael Liben:

I know it well, I know it well.

Jen Burgard:

It was devastating. And people kept telling me, you could have died, you could have died. We're just so grateful that you're here. But I wasn't, I was not grateful.

Michael Liben:

I want to talk about something for a second, because there are people who say things, and sometimes it comes from a good place. And they may not be saying the right thing, but they really mean it. I think unbalanced. The fact that you are here is a positive. I mean, it is a lucky thing. And it is a good thing. And it is something you can be thankful for you didn't make a trade, right? No one can also have it,

Jen Burgard:

It wasn't one for the other.

Michael Liben:

This is something where you really can say thank goodness, I'm here. You have a husband and another child.

Jen Burgard:

That's true. Now, I am grateful that I'm here, you know, and for my daughter and my husband and the rest of my family. Absolutely. But in the in that moment in that those first few days of confusion and shock and grief and everything is flowing through you, right anger, I mean, all of the all of the not attractive grief. Grief stages, right?

Michael Liben:

Are there attractive ones? I haven't found one yet. But ok.

Jen Burgard:

I don't know. I mean, I think just basic sadness, right? Just crying. They expect that from you. But yeah, that was difficult and then being thrown into, you know, now you need to plan a funeral. And you're going wait,"Wait, what? What? Okay". And that's just a lot.

Michael Liben:

Let me ask you this. You had to plan a funeral. So I assume you went to your church?

Jen Burgard:

I did. Yes. Yeah. I did.

Michael Liben:

It wasn't necessarily the most pleasant experience. Do you want to talk about that?

Jen Burgard:

Sure. Absolutely. I mean, I think people in general can get a lot of comfort from their church and from those who guide them spiritually. And I was hoping for that I really was. And I went to my church with my husband a couple days after our son had passed, and said, "All right, we're here". We were just very, very nervous. Basically, I was broken physically, mentally, emotionally. And I was really hopeful that this priest would help me, you know, guide me a little bit. In a lot of ways he did, but I will never forget when I walked in, he said, "Oh, what are we here for?" I said,"Well, we're here to plan you know, my son's funeral". "Oh, that's right". You know, it's like, okay, because you know, you are so lucky. I looked at him, and I was like, wait, what? Did he not hear me? Did... but what? And he just said, "You're so lucky, because you have someone that loves you in Heaven with our Lord". And I thought, yeah, okay. I don't feel that way today. That's not where I'm at today.

Michael Liben:

And I'm here and he's not.

Jen Burgard:

Right. I mean, those are those first days, right? That's the bad stuff, right? Yeah. And so it was really, it made me sad, because I chose that priest on purpose, because I remembered him from my childhood. So I chose him on purpose and said, if anyone's gonna be able to help me, it's going to be him. And it wasn't, and it wasn't helpful. And there were so many things about that interaction, that just didn't feel helpful, because he was not sitting in that place with me. Because what you really need is someone to just sit with you and let you be sad, you know, encourage you to keep going on. Right? But don't be sad. Because that was tough. And it did challenge me because ever since then, I've had a strained relationship with the church in general. And it's been hard for me it is unfortunate and I have been searching for a way to get back into religion and to find the church as a comfort. But I haven't been able to do it yet. So it's something, it's something that I deal with and I think something that other people deal with too.

Anna Jaworski:

You're listening to "Bereaved But Still Me". If you have a question or comment that you would like addressed on our program, please send an email to Michael Liben at michael@bereavedbutstillmeme.com. That's michael@bereavedbutstillme.com. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearrts Unite the Globe, but of the hosts and guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Michael Liben:

Jen, how did your perspective change after the loss of your son, Henry?

Jen Burgard:

My perspective changed pretty abruptly. And immediately. Before my son passed away, I felt like I'm a decent person, a good person.

Michael Liben:

To find good and bad, because those are concepts that fail me at moments like this.

Jen Burgard:

Yeah. Define good and bad. Yeah, absolutely. I was kind to others, right. I tried not to lie or deceive, or certainly didn't steal or any of those things, right? That, what are the 10 commandments, right? I followed those.

Michael Liben:

If anybody's asking, I will certify, Jen's a good person.

Jen Burgard:

Well, thank you. You know, once he passed away, and I understood, oh, my gosh, this happens, this happens to so many other people, right? I mean, it does 24,000 In the US alone per year. And then that's not including other bad stuff, right? I'm talking to you, you know, and your daughter passed away. And it's all of this bad stuff that can happen and does happen to people. And so we as a society, at least here, don't talk about it much. We do the things we go to the funeral and we we say thoughts and prayers, and then we move on with our lives. And if someone's healing well, if they're doing it, right, they move on too and they're happy, and they're fine and they'll get through this, right?

Michael Liben:

Oh, wait a minute, are they really though? That's the thing everybody says they are because they're supposed to say they are. I'm not convinced of that. And I think you're not convinced of that either. Yeah.

Jen Burgard:

Right. Exactly. And I think my perspective shifted, because now I understood that I can actually be a better person. I can now look at my fellow human, whoever that is, and recognize -you know what? They have, or will or are going through something really hard. How can I sit with them in that, and be there for them in that moment, rather than just, you know, throwing sandwiches at them? Or my thoughts and prayers, right? How do I actually engage, right? And so, it got me thinking about just how I experience the world around me, and how can I do that better? How can I be a better sister, mom, wife, friend, neighbor, community member, right? All of these things I could probably do better, simply by being human right with them and being honest about my feelings, and being honest about what their feelings are looking like and feeling like and presenting like, and how can I help? You know, and really, how can I help? It really changed my perspective. And the other big thing is that I had to go back to work. I went back to my job, which was pretty supportive. I mean, considering, I've heard some rough stories of people going back to work, and mine was pretty good.

Michael Liben:

We have a collection of those here.

Jen Burgard:

I bet you do. Yeah. Yeah. And so you know, they allowed me to come back part time right away and ease into it. And I was open with them. And I said, "Look, I'm going to just pop into one of these conference rooms and break down crying every once in a while. And I just want everyone to know, it's not about them. It's about me, okay". They didn't say anything. You know, and again, I was very honest about what I was feeling, because I had honestly read a couple books that really helped me ahead of that, and kind of prepare me for that. And that really guided my way. But I found that they responded so well, when I just told them what I needed. I reminded them that it's not about you, it's not about you, I love you, but it's on me, and you are not making me cry by talking about my son. I was always in tears, and I always am in tears. So just don't worry about it. You know, please ask me about him.

Michael Liben:

I appreciate that because a lot of people, that's the first thing they'll do is shut up. They won't mention it, because they don't want to get you going. And they think they're being nice. And they mean, well by that. And we have to respect that. What I think what we really want to do as parents who've lost children is we want to hear their names spoken by other people.

Jen Burgard:

Exactly, exactly. And I think so what really was a pivotal moment for me in that after loss perspective changing experience was, I was working in the field of interior design, right? I went to college for it, I loved it. I did it for 12 years, and I had a client get so upset with me about the color of his chair. And it came in the wrong color, it was a manufacturing error. And I said,"Well, we'll get you the right color. Of course, you know, it's gonna take unfortunately, like three more weeks" and he was beside himself for three weeks. I said, "Well, you have this other chair to sit on, you know, I'm not asking you to sit on the floor", right? I mean, it's just a chair. And it's just a color. And he just couldn't, he couldn't. And then after that moment, I couldn't. So no.

Michael Liben:

But you want to grab them sometimes by the shoulders and say, yes, there's so many things that are much more important than this. Get over it. And you'll get your chair in the end, right? It's not like we're not going to give

Jen Burgard:

You don't even have to pay extra for it. You're it to you, you'll get it. gonna get you ordered with the same price. It's just going to

Michael Liben:

I'm not sure I would put it quite that way, but take a minute longer. And I, I, it's those moments, right? You want to shake someone. Because I know, in those those that first year, right, there's like, I wish I could wear a badge that said, My kid died", right? yes. But yeah, you want them to know, you want them to know that you're not at your best.

Jen Burgard:

Yeah, you're not at your best and bad stuff happens. And we should all just be kind, right? I mean, I'm not asking you to be treated specially by any means. Right? But also, bad stuff happens. And your chair is not important. That's not bad stuff.

Michael Liben:

There's a way around that. I think you can say to them, "If your chair being the wrong color is the worst thing that's happened to you. God bless you. Yeah, you are so lucky".

Jen Burgard:

You know, right. They are they are.

Michael Liben:

And make them feel, you don't have to feel, make them feel guilty. Just make them see there's so many things that this just isn't it. It's just not it. I want to ask you, you said you read some books, and they were guiding you. What books would you offer to parents who've lost a child?

Jen Burgard:

Yeah, the two specific books I would offer. Specifically. The first one I read was, "It's Okay to Laugh: (Crying is Cool Too)" by Nora McInerny is her name. It's been I mean, it's in the title. Right? That one's great. And it did actually make me feel okay about laughing again, right? Because we, as parents, I think when the worst happens, you feel guilty for laughing about anything, right? Like, oh, I can't I'm supposed to be sad. But I, I have to laugh. I don't know. It's very, it's all very confusing, right. The other one I would recommend is by Megan Devine and it is called, "It's okay That You're Not Okay". And really talks about grief in our culture. And she really opened up the door for me to understand that it's okay to talk about this. And it's actually we should, we should talk about it. So

Michael Liben:

Why do you suppose it is that in our

Jen Burgard:

There's so many facets to the answer, I think, number one, it's being invited to have that conversation by someone. But on the flip side, if you don't feel like you can invite someone into that, because you're supposed to be society or Western society in general, we're told to sort of strong, and they'll look at you and say, "I don't know how you keep these things quiet. Nobody's interested in your do it", which they're saying it so kindly and thoughtfully, issue. Nobody wants to hear about it. Because I'm not sure because they believe that's true. They believe you are strong, and they don't believe they could actually go through either. I'm not sure that's true. I think people do want to that and survive, be interested in you, but they feel that you have to open up

Michael Liben:

Yeah. But I think people who say that have not been in this position.

Jen Burgard:

And that's why they can say that is because I can't that gate and let them come in. Because they don't want to barge imagine what you're going through. But if you actually sit in on their own, they'll feel that they're hurting you. The down and take a minute and imagine going through it? It's connection between people is what makes us different than the animals both sides of that conversation want to be there. mortifying, right. It's so hard. That's some hard introspective So why is it do you think that we, we don't get there? Is it work. And that takes time and effort. And we applaud strength, because they don't ask or we're afraid of showing emotion in so much, right? Look at what they've done in adversity, look public? What? What do you think that is? at what they've done. No one talks about the person who just crumbled in a puddle. Everyone talks about the person who rises up out of the ashes, and does these incredible things with with their pain and, you know, creates purpose, which, gosh, you know, I believe in, right, and that maybe the purpose of that is to help us keep going, because that's what we do. It's complicated, because we also talk about, you know, pull yourself up by your bootstraps, you know, and get back to it. And when actually, that's physically impossible, right? Like, the phrase is so silly.

Michael Liben:

Jen, when we come back, we're going to talk exactly about this point, and how sometimes people do find strength and people do rise up even if it's not from their bootstraps.

Jen Burgard:

Even if it's not by the bootstraps. Yeah.

Michael Liben:

If you've enjoyed listening to this program please visit our website, heartsunitetheglobe.org, and make a contribution. This program is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to educate, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at congenitalheartdefects.com for information about CHD, hospitals that treat CHD survivors, summer camps for CHD families, and much, much more. One of the things that we've learned from doing this podcast for years is a term called "Post Traumatic Growth" which is where someone has a traumatic experience but the person actually grows from the tragedy. It seems as though the trauma of losing Henry has helped you, in that way, in what you do today. Let's talk a little bit about how you came to the decision to start your organization, Haven.

Jen Burgard:

In starting Haven, I really, it started as honestly like a craft project. Because I wanted to do something that mattered. So I talked about those two books that were important to me. And I wanted other people to get those books in their hands. And there were so many amazing people, right, I had a great support system, I will say that I had a fantastic family and friend network. And they did great things for me. And what I wanted to do is to channel that and take all the great things and all the great resources that I got that took me months and months and months to collect and give them right away, giving right away to these parents that are experiencing a loss like this. So whether it's miscarriage, whether it's stillbirth, whether it's SIDS, anything, right, any kind of child loss, how can I make sure they are getting the best of the best of the things that I got? And so I started out wanting to just create these gifts, but how do I get them to them and all of this. And so, in 2017, I started in late end of the year, and I think I gave out like two gifts, right? November to December. And then in 2018, I was able to give out, like 29 gifts, so exciting. And you know, I started meeting with a hospital locally and talking to them about how can we integrate this for these families. But as it grew, and as more people learned about these gifts, which we provided at no cost to the families, so we're trying to raise some money to make this happen. And then we would meet these families and I would meet these other moms and I would just say gosh, like what else would be helpful, like getting together and talking and having coffee and it became really important that we offer more because a grief circle right, for lack of a better term is fine, right? Sitting in a church basement. Everyone goes around tells their story. Then we have like five minutes of casual conversation and then we all have cookies, lemonade and we're out. That's great. That's so great. But for me, I felt like connecting organically to other parents through activities I would have I would actually enjoy doing is more natural because it's more natural friendships right you're creating natural friendships and connection. They don't feel forced, because, hey, we're both in the sad club where our kids died. But instead, like, what else do we have in common? What? What are you doing to honor your child with your living children? So we started hosting things like floral workshops for moms and hand lettering classes, and coffee meetups and yoga classes that were focused on grief healing. And so these were just more natural ways for for these people to find connection and to find other friends. And now they have, they found these lifelong friendships now, through this group through organic meeting, and it snowballed after that. And then it was like, well, what else? What else do people want, you know? And so we went that way for years, myself and the board. And finally, just this past year, we thought we talk a lot about accessibility and a resource to parents. And a friend of mine specifically had said, "When my son died, I went on YouTube, to try to find people recording their stories of their child and, and how their experience was and how they were surviving. And I was desperate for any information, you know, I was looking on Facebook groups everywhere. I couldn't find much. And I thought parents want to talk about their kids. They want to share about their kids, they want to share about their stories, their grief, their perspective, how they've grown. But also they want to hear about how their loss and their child affects other people. Well, what if we just did a podcast?

Michael Liben:

Well, that would have the reach

Jen Burgard:

And that's the idea. And the thing is, is that I think there's a beautiful intersection there of parents that want to share about their kids. And you know, other parents that want to hear those stories. But then bringing on professionals, providers, thought leaders in the community and beyond that have insight and experience and all of these things to offer, that maybe mom who lost baby can say, "Oh my gosh, yes, he's talking about the things that affect me. And that's healing for me. He's telling me that's normal". And that's so important to hear. And so I think that there's there's so many conversations that can happen around loss. And we talked about how we as a society, just don't talk about it enough. So why let's talk a little more, right.

Michael Liben:

Well, I see that that goes back to an earlier point, the fact that you and I can host podcasts, we don't have any shortage of guests and the people coming on that's the answer. People really do want to talk about this. And it turns out, there's a bunch of people who want to hear about it, because maybe they're not talkers. Or maybe they're a little shy to be out in public. But they need to know that they are not the only ones with this story. You know, my father taught me years ago, you can't have a problem that somebody didn't have before you, it just doesn't exist. And if you can come to a central location, like a podcast, which has years of guests and interviews, you'll find something that approaches where you are. That's important for people they want to know they're not the first people out there with this problem,

Jen Burgard:

Right? It's just like that first day when I lost my son, right when Henry died, and they said, "This never happens". But then I come to find out actually, it does. And actually, you can talk about it with all these people and feel better, and you can all survive together. Because it wasn't until I met other moms that had survived years before me and losing their children that I thought, oh my gosh, I can survive too. Because they did. And I can and I think that's so valuable.

Michael Liben:

So how does somebody who's in this position of grief right now go about receiving a gift from Haven? How do we find you?

Jen Burgard:

So we have a website, and it is called havenmidwest.org. And there is a tab for healing gift and there's a little request form, it just asked for some information. And that gets sent to us. And then all of our gifts are actually packed by other loss parents.

Michael Liben:

Is this only within the continental US or is this overseas?

Jen Burgard:

At this point we have shipped to Canada, we will traipse that hurdle when it arrives if we're shipping elsewhere. But I don't see an issue with that at this time.

Michael Liben:

Do you think your podcast is going hand in hand with Haven to really help get the word out and really move it around, do you notice that after the podcast you get more contact to Haven?

Jen Burgard:

I have noticed that especially upon promoting the podcast, I think promoting the podcast and then the episodes encouraging folks to go to the website and check it out. And to request a gift for a friend or a family member. I think we're getting more requests, which is fantastic. I did mention that in 2018 we shipped out 29 gifts. Just this year over 200 gifts. So it's been steady growth, which is great to see. And I think a big part of that and one of my big messages even in the podcast is I encourage folks to reach out, request a gift for someone and don't assume that someone else already did. Because it's so much better that five people request a gift for the same person. We'll still just send one, right? We'll still send one. But it's it's so much better if five people request it for that parent, then none.

Michael Liben:

I can stipulate for anybody who wants to know, as I said earlier, Jen Burghardt is a nice person. Oh, well, you know what, she's a wonderful person. She wants to give gifts to people. She wants to help people. She wants to share from her own experience so that you don't have to feel that you're cutting your way alone because you're really not. And so for that, Jen Burgard, I want to thank you so much for joining us on "Bereaved But Still Me".

Jen Burgard:

Thank you so much for having me. This is wonderful.

Michael Liben:

And that concludes this episode of"Bereaved But Still Me". I want to thank Jen Burgard for sharing her experience and her wisdom with us. Please join us at the beginning of the month for a brand new podcast. I'll talk with you soon but, until then, please remember moving forward is not moving away.

Anna Jaworski:

Thank you for joining us. We hope you have felt supported in your grief journey. "Bereaved But Still Me" is a monthly podcast and a new episode is released on the first Thursday of each month. You can hear our podcast anywhere you normally listen to podcasts at any time. Join us again next month for a brand new episode of"Bereaved but Still Me".

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