Bereaved But Still Me

Phyllis Renfrow and Amy’s House

Phyllis Renfrow Season 7 Episode 3

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What is Amy’s House? Where can someone needing a place to stay while receiving a transplant in Central Texas? What can you do to help someone receiving a transplant?

Phyllis Renfrow is the executive director of Amy’s House. Amy's House is a Medical Lodging Facility in Temple Texas, just minutes away from Baylor Scott and White Health Center. Transplant recipients are able to stay at Amy’s House free of charge.

Phyllis graduated from the University of Central Texas with a graduate degree in

Counseling in December of 1997. She has served in many roles over the course of her career to include 17 years as a director at Baylor Scott and White Health, but it was an accident over a July 4th weekend in 2013 that actually led her to discover her passion for the transplant world and the people on both sides of that process. She lost her 13-year-old granddaughter, Monika, in a car accident when a distracted driver ran up on her daughter's vehicle as they were sitting stopped in traffic. 

In today’s program, we're going to learn more about Phyllis, Amy’s House, and some advice from Phyllis on how to help others dealing with transplant..

Links related to Amy's House:

https://www.amyshouse-temple.org/


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Phyllis Renfrow:

When you're going through a situation like a transplant, you want to be there with your family. You shouldn't have to be worrying about those things. I don't think anybody should ever have to go hungry or sleep in their car so they have a place to stay.

Michael Liben:

What is Amy's House? Where can someone find a place to stay while receiving a transplant in central Texas? What can you do to help someone receiving the transplant? Welcome to "Bereaved But Still Me". Our purpose is to empower members of our community. I am Michael Liben, and the father of three children; Idan, Sapir, and Liel. Liel, my youngest daughter, was born with a heart defect and later she developed autism and epilepsy. Losing her at 15 is what has brought me here to be the host of this program. Our guest today is Phyllis Renfrow. She is the executive director of Amy's House, which is located in Temple, Texas just minutes away from Baylor Scott and White Health Center. Transplant recipients are able to stay at Amy's House free of charge. Phyllis graduated from the University of Central Texas with a graduate degree in counseling in December of 1997. She has served in many roles over the course of her career, including 17 years as director at Baylor Scott and White Health, but it was an accident over the July 4th weekend in 2013 that actually led her to discover her passion for the transplant world and the people on both sides of that process. She lost her 13 year old granddaughter, Monica, in a car accident when a distracted driver ran up on her daughter's vehicle as they were sitting stopped in traffic. In today's program, we're going to learn more about Phyllis, Amy's House, and some advice from Phyllis on how to help others dealing with transplants. Phyllis, welcome to the program.

Phyllis Renfrow:

Thanks for having me, Michael. I'm happy to be here today.

Michael Liben:

Let's start with learning more about you. Can you tell us about your family, your children, and your grandchildren?

Phyllis Renfrow:

Absolutely, I'd love to. I have three grown children and my husband also has three grown children. So we have half a dozen together. I have 10 grandchildren. My husband Joe lost his late wife to a heart attack and donated her organs. And about that same time we lost my granddaughter and donated her organs, Monica at the age of 13. And so that's what brought Joe and I together was going through that mutual loss. Tell me more about Monica. Monica was awesome. She was 13 when she died. But she was smart, funny, kind of shy. She loved working with children who had disabilities. She was a poet, she loved to saying she had five brothers. And I can remember her calling me saying, "Gaga can I come over to your house this day? I just have to have a little fun way from the boys".

Michael Liben:

I like that. What was Monica like growing up?

Phyllis Renfrow:

Monica was a really good kid growing up, she was a little bit shy. But having five brothers, she was always on her toes. She liked to do so many things. She was just stellar in school. She was a cheerleader when her brothers were playing football, and always had a great time, had lots of friends. But a couple of things that really struck me the most Monica was just the kindness within her. I often say Monica was an old soul, because her wisdom and her intellect, I think went far beyond her years.

Michael Liben:

How did you see that? What makes you decide when somebody's an "old soul", I love that term? How do you see that?

Phyllis Renfrow:

I can remember one time in particular, when I was talking about a child that was in our family and how they were being terrible. And Monica said, "Gaga, they won't be little forever. One of these days, they'll be grown up". But she was funny. I can remember taking her out one day and I used to always take her out to have her nails done and her toes done. And there was some kids there and they were acting up and she said, "Gaga, he'd beat us half to death if we acted like that." And I said, "Yes, he would".

Michael Liben:

Only halfway that's good. She sounds like she was a real pleasure to be around.

Phyllis Renfrow:

She was just joyful. And she mixed with children, she mixed with adults. She just was a kind soul.

Michael Liben:

Kids sometimes are like that. I noticed that especially with my older daughter. She was maybe five years old, seven years old. And depending on who she was with, she would become them. So suddenly she was an adult and she'd sit upright with her legs crossed, and her hands would flop. And she was like being older. I am assuming that you saw that with Monica from time to time.

Phyllis Renfrow:

Absolutely, absolutely. I did. And I said she's kind of like a chameleon, but always very appropriate. When we would go to school with the boys and they would be talking about how boys were acting out in class. So we would say, "Does Monica talk?" and they would say,"Appropriately".

Michael Liben:

What was it like being around with her just in general, I assume that you get to babysit everybody and all those boys and her. What's that kind of like? When they're all together in one place?

Phyllis Renfrow:

I did, actually when Monica was young, their family lived with me. And so she lived with me when she was born, she came home to my house from the hospital. Yeah, we had a different relationship. But she was just the type of child, she never wanted to hurt anybody's feelings. She didn't want anybody to be left out. It was in a lot of the poems that she wrote, she would talk about those things. And she would talk about helping people to study and some of the most fun things I remember is, I would take her shopping and buy her clothes. And her teacher would say, "Oh, let me see, you look so nice". And she would say, "You have to thank my Gaga because she's the one that picks out all my clothes".

Michael Liben:

Is that maybe getting ready to blame somebody if it doesn't work?

Phyllis Renfrow:

Maybe it was, could have been.

Michael Liben:

I like that. What was she like with her brothers? Did they tell her more boy like, or did she try to act girly around the boys just to sort of be a contrast?

Phyllis Renfrow:

Yeah, she wasn't a girly girl. I think that is because when you have five brothers, you're not a girly girl.

Michael Liben:

You don't see it anywhere. Yeah.

Phyllis Renfrow:

She mixed in with her brothers fine. She would get frustrated with them, of course. And those are times after they had moved out and they were living in their own houses. She would call me and say, "Gaga, can you come over and get me?" and sometimes she would be crying. She'd be so frustrated. And I would say,"Yeah, is everything okay?" And she said, "Yes, but I just can't deal with the boys anymore". I remember one time, Monica's cat was dying, and it was really sick. And she called me one morning on the phone, it was probably like six in the morning and she was crying and she said, "Gaga, can I borrow$90?" And I said, "Yes, but what do you need $90 for?" And she said, "Because look, he's really sick, Gaga". So my daughter to Monica and her cat to the vet that morning before she took them to school. And the vet's like, "Well, we could do this but the cat's probably got cancer, but we could do some tests on it". And my daughter shaking her head no. And Monica says, "Okay, thank you. That would be great".

Michael Liben:

Yep, as a parent and a dog owner, I know exactly where your daughter was on that moment.

Phyllis Renfrow:

I know my daughter said, "Oh my gosh", she said, "I wanted to just choke the vet to death, because they were saying these things. And there was no way I could tell my baby girl who's standing there crying. No, we're not going to do this".

Michael Liben:

Yeah, we had a very similar experience. My dog, she had tumors, which they decided to remove, which was, I guess, okay with you. But I said we weren't going to do any more than that. No more surgeries after that. And certainly no more debilitating treatments. If anything were to happen. Well, that was years ago, and she's fine. But I remember what it was like when the kids were saying like, "You're going to fix this,

Phyllis Renfrow:

One Saturday, we went to the vet and I was right?" going to take my cat in to have his shots given to it. It was a new kitten. And when you go to the pound, you never get one. You always go home with two animals. And so -

Michael Liben:

Really? No one told me that

Phyllis Renfrow:

You can't leave the brother or sister there by themself. And so we went into the vet and this particular veterinarian's office, the dogs and the cats went in the same door. And so of course, as soon as we got in, the cat's back was arching and she was hissing. And Monica said, "Gaga, you better let me hold her. She's fixin to tear you up.

Michael Liben:

Somewhat more somber note, Monica and her mother had a special interaction that foreshadows her destiny. Can you tell us about that?

Phyllis Renfrow:

Absolutely. A couple of things happened actually, before Monica got in the accident that day. First of all, she wrote a letter to her friend on Facebook. And she said, "I dreamed that I had an accident and I was killed". And her friend said, "Didn't that scare you?" And she said, "No. I dreamed that I died saving BB which was the highest honor". And in fact that morning, we gone on a family vacation, we rented two cars, and when we left the boys were fighting. And so she had traded places with Brendon to separate the boys. And he wanted to trade places back but she wouldn't let him trade. And she was where he had been previously sitting. And then the second thing is she wrote a poem about death. And you know, it was just one of the strangest things that she did that before we went on vacation, and it said, "I lay silently down for a slumber I will not awake. I know people will mourn for a loss of a loved one, but I will fly in the sky outside watch. People suffer and I wish they would not grieve, I loved them so much. And I hope that they live life to the fullest, smile when they think of me, laugh instead of cry, succeed in life before they die" And I just found that really insightful. Of course, these things, we didn't see all of these things until after she had passed away. And then the next thing that happened was she had left a list of music. And it was actually the songs that we had played ather memorial and they were slogans that were very appropriate for such an occasion. But probably the most ironic thing was my daughter had gotten her new driver's license just before we took that vacation. And Monica was looking at it and she said, "Mom, what does it mean to be an organ donor?" Because my daughter was a donor. And my daughter said,"It means that if you die, other people might benefit from your organs". And Monica told her then she said, "I think I would like to do that". And little did we know that just a few weeks later, our daughter would be making the decision to honor Monica's wishes to donate her organs.

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@bereavedbutstillme.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 Hearts 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:

Phyllis, we were talking about how your granddaughter passed away from a car accident, and how she'd already told your daughter that she wanted to be an organ donor. Can you tell us why it was important to your daughter to decide to be an organ donor and whether or not your family was touched by transplant prior to Monica's passing?

Phyllis Renfrow:

You know, we never really talked about it that I can recall. And I don't know if anybody in our family, whoever had a transplant or needed one. But I'm really not surprised that Laurie was a donor. I know I've always been a donor and it was a big deal when I worked at the hospital so it never occurred to me to not be a donor. And I think my kids probably felt the same way. Why not share something that you're never going to need again, when you die. It's like the ultimate act of kindness.

Michael Liben:

Was it the kind of thing that you talked about as a family? If you heard it on the news, somebody had something positive to say, some kind of reinforcement going on? Or did she just out of the blue, did your daughter decided that she wanted to be a donor?

Phyllis Renfrow:

I really think it was probably out of the blue. We talked about things from time to time. And of course, you hear stories of people that have donated organs, but I don't really remember as necessarily promoting it. It just seemed like something that everybody did. And my family all became organ donors on their driver's license.

Michael Liben:

That's really interesting that you say that, because from my experience, I don't assume that everybody has, from my experience, I assume that most people really don't want to do it. I know that when we donated my daughter's organs, the doctor and the organ transplant coordinator fell on the floor, quite literally, because we said, "Wait a minute, we want to do that". And they had come ready with speeches and explanations and everything you need to know. And they didn't need any of that. So in my experience it's been very rare that people want to do it. Now you come in contact with families every day, do you feel that there's that something is holding them back where they're just really ready to go?

Phyllis Renfrow:

The thing was, that I come in contact with, I think, have a lot of guilt, because they almost feel like they're taking something away that someone's going to need back. And they're always hesitant to write the families and to say thank you. But that was such a healing process for us with Monica the night after the accident happened. And incidentally, and ironically, there were two paramedics about two cars up in front of my daughter when the accident happened, and had they not gone back and been doing CPR on Monica, we probably wouldn't have been able to donate her heart. But we donated everything except the lungs. And that was because the lungs were too damaged from the accident to be able to be donated. But we donated everything that we could. And the heart was the most important thing to us. Because for us that was the most special thing about Monica,

Michael Liben:

Have you had any communication with the organ recipients?

Phyllis Renfrow:

We have we've heard from, I think probably every one of them at one time or another. It was about a year after the accident before we heard from them. And we were anxious because it felt like we were keeping a piece of Monica around by donating those organs. When we started hearing from people we heard from a girl and the muscles in her legs had deteriorated and she was able to receive some donation from Monica and regain her mobility and be able to be active in school. There was a young man who was sick and he got some organs from Monica. But it was really the lady that got the heart that kind of touched us so much and we've stayed in contact with her for nine years now. She was actually a trauma care nurse in Hawaii. The first person that was supposed to have received Monica's heart, that fell through. And so we said, "oh, we've got to give the heart or we're just not going to give any organs", which I don't know that we would have done that. But at that time, we were wanting them to keep Monica on life support for as long as they could, because you just think if I can pray hard enough, if I can wait, hold her hand long enough, surely, we're going to see that this is a terrible mistake. You think if you are a good enough family, that those things don't happen to you, but we know that death can happen to anybody. And we waited for them to find another recipient. And it just happened to be a lady named Leslie that is a trauma care nurse in Hawaii. And she had spent her whole life taking care of families like ours. We felt Monica's, all of her organs would go to a child because she was 13. But she weighed 100 pounds even. And Leslie weighed about 100 pounds and so she received Monica's heart. And I realize now that was the best thing that could have ever happened. She was the perfect recipient, she takes great care of herself.

Michael Liben:

I really liked the poetry of her heart going to a nurse who dealt with other people and probably took care of heart patients and who knows what. And I think that's, it's deserving in its way, don't you think?

Phyllis Renfrow:

I do. I do. I think that nobody could have deserved that heart more unless it was Monica herself. But it was funny because we were talking one day and she said,"Phyllis", she said, "I don't know why Monica had to die for me to live". But Leslie would have died had she not received that transplant. And I don't feel that way. I don't feel like Monica died for Leslie to live. I feel like it was just a way for Monica to be able to be a hero. And she always wanted to do good things and to do something great and wise. And so I feel like Leslie receiving that was a way that she was able

Michael Liben:

I want to share something similar. About a year to give back. after my daughter died, I got a phone call from a woman I didn't know, sounded like an older woman. And she started telling me her story and I realized this was the woman who received my daughter's lungs. And she was, I think 66 when she received them. And for that moment, it hit me that every breath she took, and every word she spoke originated in my daughter's lungs. And that was a very difficult moment for me. But she said she called me because she felt the need to apologize, she felt bad that she was living because my daughter had died. And I explained to her that my daughter had already died, and there was nothing else we could do and this was a very simple decision for us and although we wish we weren't in that position once we were happy to help other people live. And she said, "My family told me that, the social worker told me that, my rabbi told me that, but until I heard it from you it didn't work. Thank you".

Phyllis Renfrow:

That's powerful

Michael Liben:

It is. And did you run into survivor's guilt on the part of other people?

Phyllis Renfrow:

My grandson, Brenden, had survivor guilt really bad, because he was the one that was originally sitting where Monica ended up sitting when the accident happened. And I can remember one day, he was staying the night with me. And after the accident, I traded in my small car and I bought a Hummer, which now gets six miles per gallon I might add,and Brenden was sitting in the backseat and he just burst out into tears, and he said, "Gaga, it shouldn't have been Monica that died. It should have been me. Because she was good at everything,she was so perfect". And he was like nine years old. And I said, "Brenden, I don't know why Monica died. But I can tell you that if you're still here, it's because God has something for you to do in your life. And he said, "Well, what do you think it is?" So I said,"I don't know Brenden". But I said, "Maybe you're going to be the president, maybe you're going to be a lawyer, maybe you're gonna be a doctor. I don't know. We just have to wait and see". And when we got home that night and got passed everything. And then about two or three days later, he called me and he says, "What do you think it is?" And I said, "I don't know". You know, he's graduating high school this year. And I still don't know what he's gonna end up being. I just believe that everybody that lives, they have work that's not finished yet. And I have to believe that's the case with him as well. But he did have survivor's guilt. And I had a little bit of survivor guilt too. Because that morning before we left to come home, Monica had wanted to ride home with us. And I said, "No", that we would catch up when we got into town. And I think you always look back and you think, "Gosh, what if things had been a little bit different? If one thing could have happened differently, would it have changed everything?"

Michael Liben:

If you've enjoyed listening to this program, please visit our website heartsunitetheglobe.org make a contribution. This program is a presentation of Hearts Unite the Globe. And as 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. Phyllis, you are now the executive director of Amy's House tell us more about what this nonprofit organization is and how it came to be.

Phyllis Renfrow:

Thanks Michael. Amy's House is actually named after Amy Henderson-Firth, who died in November of 2012. She was 38 years old and had two children. And she had a blood clot that went to her brain and was declared brain dead. And they donated the organs. And it was actually the person that received Amy's lungs that wrote her parents and said thank you for letting me live to see my children grow up. And when they received that letter, they were so touched by it, that initially they bought a travel trailer and they put it out over at the Baylor Scott and White they have a little RV park. And they realized we need to do more, this is not enough. And the city donated the lot that Amy's House is on and JLH Corporation funded building the house. And they built this beautiful facility that has eight different pods or different rooms in it and we can accommodate up to eight families at a time. And people can stay based on donation, we don't get any funding from the government. But we do get donations from people that are do-gooders and want to help out with the cause and it's a beautiful thing. I know when I first got here, they told me stories about how people would sleep in their car because they couldn't afford to go to a hotel, but they wanted to be near their loved one. And then, probably the first week we were here, there was a gentleman and he had gotten a hamburger deal where you get two hamburgers for the price of one. And he ate one the first day and he was putting it away, save it, so he wouldn't go hungry the second day. When you're going through a situation like a transplant, you want to be there with your family, you shouldn't have to be worrying about those things. I don't think anybody should ever have to go hungry or sleep in their car, so they have a place to stay. But Amy's house, we provide medical lodging and all of the transplant patients have to be on medications for the rest of their life, it's anti rejection drugs. And so because of that they have to have a sterile facility and a Amy's House is sterile. It's got a home environment, it's a communal living circumstance. It's comfortable, it's high quality, it's highly sanitized in so patients, caregivers, people that are giving them transportation, can stay here, it's strictly based on donation. Some families make a donation, some families can't afford to, but nobody is ever turned away. We have little refrigerators in each room where they can keep their medications cold and keep them good while they're going through the process. And they can stay here anytime from when they go through the initial evaluation up until after the transplant has happened. And they're coming back for follow up visits, so anything related to their transplant.

Michael Liben:

That's wonderful work that you do, I'm really proud of that. I know that we got to stay in a little shack, which was not particularly comfortable. But it did take the edge off. It was a way for us to go and be by ourselves. It had a refrigerator and a small kitchenette, and we could take care of our needs there. Not deluxe, but it's what we needed. And I'm happy to see that other places are doing it better and that somebody is thinking ahead about the family. That's super important. How can people learn more about Amy's House, tell us about where we can find you on the web, and maybe possibly make donations.

Phyllis Renfrow:

Under Central Texas TRIO on Facebook, we have a site. But we also have a YouTube video, which shows the virtual tour of Amy's facilities. And we encourage and invite people to go out, I think they're gonna put that in the notes at the end of the podcast. The big thing is, I think people live our lives, all of us, like we have forever but sometimes we just don't realize that forever ends just minutes or hours from them. And we have to do the best we can do. And I think that's what we're trying to do here at Amy's House. We're just trying to do the best we can to let people live in the moment and be with their family and value that time. So all on Facebook, there's been Central Texas TRIO, it's not under Amy's House, it's under Central Texas TRIO. And then right now we have a donation button out on that side. And people can donate if they choose to. And we always appreciate those donations. Because we do provide food here, we don't provide meals, because transplant patients all have a different diet. But we do provide snacks. And we have food that the families can go in there if they need to. And they can prepare it themselves according to their diet. And that's a wonderful thing.

Michael Liben:

I want to emphasize that anybody of any means can and should donate from the smallest amount to the largest amount. Nobody here has to be a great benefactor. But everybody should be a part of this.

Phyllis Renfrow:

I appreciate that. And if you can't donate, there's other ways you can help in one of the biggest ways is, if you can't donate to help Amy's House, donate your organs when you're not around. Because that's so important. And it doesn't cost a penny

Michael Liben:

That goes without saying everybody should sign that card.

Phyllis Renfrow:

It's so important. What a wonderful way to be able to pay it forward.

Michael Liben:

People have said to me over the years, oh, you're a hero. What a difficult decision. You know what? We had been making decisions of life and death for 15 years with my daughter. Donating organs was the easiest decision that we ever had to make about her. Because it was over, there was nothing left to do. We couldn't bring her back. But we could maybe find a way to get some meaningfulness. And we have three excellent reasons to donate organs and with your permission, I'll go through them.

Phyllis Renfrow:

Okay.

Michael Liben:

Number one, saving a life is the highest thing a human can do. If you save a life, it's as if you saved the world. That's one. Number two, there is no better way to memorialize somebody immediately, and so completely than to have those organs living in somebody else who otherwise might have died. And three, any part of your loved one that can still walk around on this earth should do so. That's it.

Phyllis Renfrow:

That touches me so deeply, Michael, because that's exactly how I feel. That's what brought me to Amy's House was we donated Monica's organs. And then when they were looking for somebody that had a counseling background, they said we love the fact that you have experienced this and you know what the families go through. But donating the organs is only part of that circle, because somebody has to donate them, and then it takes a whole team to be able to make those matches and to line everything up and have everything just in pristine condition. And then, it takes the person receiving the organs, taking great care of themselves, and appreciating the gifts they were given and making the most of that. So it's all such an important process. But I can't tell people enough how many people there are, that are waiting for organs, and how sad it is to hear somebody come in and say, "I've been waiting for a kidney for eight years" Because every moment that they're on dial, it's just it's just chipping away a little bit more of their lives. When people could be living good, meaningful lives. It's important.

Michael Liben:

Yeah, I totally agree with that I would share one last story. One of the women that we saved that night, we saved four women, one of the women we saved was a seven year old girl on dialysis, she needed a kidney. And the doctors had just told the mother, "It's just not going to happen for you. We don't have it, we're not going to find it". And they were getting ready to take her home and just love her and be with her, she was seven and a half years old. And they were going to say goodbye. But even then hope springs eternal and like the cavalry over the hill we came by. So you never know how these things will play out. You never know. Is there anything else that you want our listeners to know about transplants and specifically about Amy's House?

Phyllis Renfrow:

The main thing I want people to know is that we just encourage you to get involved, to watch what's going on at Amy's House, and even in other areas because Amy's House is the only place like this in the Central Texas area. And I'm sure there are other places that need homes exactly like this. I know we have a sister organization in Houston that has one. There are a lot of families that are really hurting in they need somebody to give them a hand up. And that's really what a Amy's House does. And that's what anybody out there can do. That we can all give somebody a hand up because we all need it from one time to another.

Michael Liben:

What you do is is a blessing to everybody involved. And I don't say that lightly. Amy's House and any other organization that does anything to help these families is, in my opinion, doing the work of God. And again, that's something I don't distribute lightly. So I thank you so much for the work that you do. And for Amy's House and any other place that does the same thing. These are people that we really need to help and to encourage. Phyllis, thank you so much for joining us on "Bereaved But Still Me".

Phyllis Renfrow:

Michael, it's my pleasure. Thanks for having me.

Michael Liben:

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

Anna Jaworski:

Thank you for joining us. We help 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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