Living with Loss after Loss

This episode of "Heart to Heart with Michael" features returning Guests Jackie Renfrow and her mother Wilodene Gist. Featured in July, this mother-daughter duo talked to Michael about losing loved ones to a misdiagnosis. In today's episode this dynamic duo talk to Michael about what it means to suffer loss after loss generation after generation. They talk about what helps them to continue even after their loved ones are gone and they also talk about what survival means to them.

Transcript

spk_1:   0:03
Welcome harder with Michael Future in your host Michael. Even our program is designed to empower the bereaved community with information and stories from those who have suffered the most terrible loss. Michael, himself a bereaved father, will be meeting with people from around the world to share and to draw hope from their experiences. And now here is Michael even.

spk_2:   0:27
Welcome to the eighth episode of the first season of Heart to Heart with Michael, a program for the Braves community. Our purpose is to empower members of our community with resource is support and advocacy information. Today's show is living with loss after loss. Here with us today to discuss this topic are Jackie Rep prone with Nadine Guest. For those of you who listened to last month's program, this show will give you the rest of the story. Last month we talked to Jackie and Will Uddin about losing loved ones to a misdiagnosis, and today we're going to talk to them about what it has been like for them living with loss after loss and I'll say after loss again. Jackie is a mother and a grandmother of Children who have had or currently have long Q T syndrome. Will Indian, Jackie's mother grew up in the shadow of a lost A long Q T syndrome because her father died from this genetic heart problem, Jackie's grandfather, Will Odin's father, had seizures and died unexpectedly in his sleep. Jackie's mother also started experiencing seizures at a young age when Jackie had her Children, Jimmy and Chrissy. No one expected both of them to also die at a young age. Since her devastating losses, Jackie has been raising awareness of long Q T syndrome and having her family and others tested for it. Jackie's granddaughters were currently being treated at Riley Hospital, and several family members are also going through genetic testing now. So welcome back to heart to heart with Michael, Jackie and well, Nadine. Pleasure to see you.

spk_4:   1:48
I'm Michel. Thanks for having this back.

spk_2:   1:50
Oh, it's I'd like to say it's a pleasure, Will. It didn't tell us about the losses that you experienced as a child.

spk_0:   1:57
Well, the only laws that experiences child with one dead. He was 26 and he did that unexpectedly in his sleep. But my grandmother told me later that he had had, uh, walking die, void and all this stuff that, you know, they had names in that because they didn't know what people had. And, uh, he he went to bed at night, and my mother woke up the next morning. He was dead. Decider. What?

spk_2:   2:32
What year was that?

spk_0:   2:33
There were 1932 but you don't see in. In the 19 thirties, it was a disgrace. Toe have, Ah, seizures. Really? Yeah. You You were very secretive about it. Why something? Well, because people were ignorant. They they didn't know it better with on love was only three. So I didn't really know, my dear, that well, but it was, uh it was a hard struggle, but my grand parents raised me. My mother remarried, and, uh, it didn't work out with him. And people were over poor. In those days, there just wasn't very much money. And, uh So, uh, after she married this other man, she was pregnant with another child. One. So I went to the grand parents. Jackie. Yes.

spk_2:   3:35
Tell us a little about the losses that you experienced is a child.

spk_4:   3:38
I do remember her. Her cousin Mary Alice passing away from a seizure. She was very young. She was only probably 28 29 she had four Children.

spk_2:   3:51
When I'm trying to build here is a picture of family that surrounded by, if not constant, lost on the threat of constant loss or a constant threat, Ana and how that affects your life and how you go up from day to day and do the things that you need to do, knowing that any day could be anybody.

spk_4:   4:11
It's very difficult. It was more when we hit the later nineties that there were began to be a lot of losses. And, of course, that was being my kids. I lost my dad, but that was due to cancer, and my brother in law that was also cancelled related better course in 2000. Then we lost Jimmy and 2000 and two, we lost Chrissy too long Q T, which we believe is long Q T. Now. Well, I'm pretty sure because you're too young. People aren't going to pass like that in their sleep. There has to be a reason

spk_2:   4:46
I understand with me and tell me also about as you got older and when you began losing more people in your family specifically, uh, your grandchildren. What is that for you? I mean, you see a connection that goes back to your father. That goes down as far as your grandchildren.

spk_0:   5:04
It's how horrible you know, you you all of a sudden I come over, knock on my door and and my my grandson's dead. He's gone. Then a couple years later, my granddaughter, but the same mother and you think, Well, what What's going on? What's happening here? And then finally when When I found out what I really had, we connected it all. But then we were too late to save Jimmy and Chrissy. We were to 10 months from saving Christie just 10 months.

spk_2:   5:42
I have to imagine that that is probably the most difficult reality to face. Is that you're that close,

spk_4:   5:49
then? Well, and I have to tell you the other difficulty. Reality was for them to put a life saving device. And me when my Children were gone, that just was fair to me.

spk_2:   6:02
Do you feel any sense of Survivor's guilt?

spk_4:   6:05
Absolutely. Yeah. Yes, I do.

spk_2:   6:08
Tell me a little bit about that.

spk_4:   6:10
Um I'm not as bad now is I used to be, but probably the 1st 10 years of their lost was the worst for me. I just couldn't understand why I was here. And they were courses. You know, being a parent and you lose a child. Well, it's not supposed to happen that way.

spk_3:   6:31
I I understand that. And when we come back after the break, I want to talk a little bit about that, so we have to take a break. But

spk_2:   6:41
when we get back, we'll be talking with Dean and Jackie about perpetual grief and perpetual loss and how they deal with it when you return to heart to heart with Michael

spk_3:   6:52
Hi, I'm John Montas of NBC's Hit a Cappella Show, the single and a cappella music. It takes a team to create a sound that many will enjoy. Just like it'll take a team to help my good friend Miles Sweitzer on H LHs Survivor. Let's help Miles fulfill his dream and make a big enough sound to bring awareness to congenital heart disease. Please visit him at Go Fund me dot com backwards slash the miles project Miles with the UAE Again, that's go fund me dot com The Miles project. This is for Miles.

spk_1:   7:22
You are listening to heart to heart with Michael. If you have a question or comment that you would like addressed on our program, please send an email to Michael even at Michael at her toe heart with michael dot com. Now back to heart to heart with Michael.

spk_2:   7:38
Welcome back to heart to heart With Michael. Today we've been talking with building guest and her daughter Jackie Renfroe, about the losses they have experienced in their lives. Now we turn our attention to how they've dealt with perpetual loss and perpetual grief. Will a dean, I cannot imagine what it's like living with that much lost. Almost everybody associated with this program has lost somebody or we wouldn't be here. And still, I cannot imagine what it would be like to be under that specter so often. How do you deal with that perpetual us? How do you get up in the morning and say, OK, I'm just gonna go ahead how you do it.

spk_0:   8:13
Well, I've lived for so many years. Ah, yeah. I actually wonder why the good Lord let me live.

spk_2:   8:22
I have this picture of you sort of standing still and people older than you and people younger than you for three. Maybe four generations are falling away, un explica ble and young. And you're and you're not. Do you? Do you feel like Why? Why am I here? Why? Why, yes. Why did it

spk_0:   8:40
skips into I wonder, uh, why lived in and they die. Ideas.

spk_2:   8:48
Do you feel some kind of survivor's guilt? You are you?

spk_0:   8:51
No. No, I don't feel that. I just feel like I'm lucky I found out what I did so that other people could be saved. But no. And I don't feel guilty.

spk_2:   9:04
How do you deal with, um, with that kind of loss and that kind of constant grieving? Do you, at times of trouble do you turn to prayer? Do you? Do you? I know I personally, I run away to humor, and I make the worst jokes possible. But that's what keeps me a lot. And what are the things that you do just to go forward?

spk_0:   9:25
Well, I don't feel like they're very much for for me to go eight when you

spk_2:   9:34
were only 68. How did you get up? How did you keep you know what was the thing that said I'm okay. I'm just gonna go forward

spk_0:   9:41
ahead to I didn't have any choice. Ah, head, I had to survive. I want I wanted to survive. I want to live as long as possible. The hate from my grandchildren be gone, you know? And I hated when when I found out that this cousin had died, I never mother that they had passed away with. I'm sure the same thing. And it made me said to think that they were Well, pardon me for saying so, but so dumb that they wouldn't listen.

spk_2:   10:27
I mean, let me just Philip that story because I think it's a little bit lost. This is ah, relative who you suspect it had long peut and you told them to get checked and they refused. Is that correct? Right. The sense I get from you is that you're a very strong willed person. That that you don't see any real choice except to get up in the morning and do whatever needs to be done.

spk_0:   10:47
That's all I can do,

spk_2:   10:49
Jackie. I want ask you the same thing. Where do you go? What? What drives you? What helps you get up in the morning?

spk_4:   10:55
Ah, well, I really am active in my job. I mean, my job. I just throw myself into my work. Uh, my family, my grandchildren. My mom, Um I know I have people that do need me here on earth, and but however, I try to bring as much awareness as I can did this to try to help other people or try to help other people with my loss. But I I'm not gonna lie and say that I don't have days that I just want to lay in bed and feel sorry for myself because I do. I want to do that quite often. To be honest, I have days where I wonder why I have to hurry and go to work. White can I just do? I would love to just be able to bring awareness. Um, have kids heart screen. Do get paid for what? I loved to do what I'm passionate about.

spk_2:   11:48
So it's that passion that drives you, though that's the passion of helping others is what keeps you moving forward.

spk_4:   11:54
Yes, and I have to do it because it's I own are my kids. Every time I bring a little bit of awareness and then that does not make their death won't be in vain. If I continue to save other people with their law, their tragedies

spk_2:   12:11
let me go one step further. One of the worst or one of the hardest questions that people ask me is How many Children do you have? And I want to see now or I want to say, Well, I used to have three. Uh, how do you answer that?

spk_4:   12:23
How that's a tough one For a long time, it was kind of sad because have you ever heard that saying, You have to tell your story 100 times over? I would almost tell people and look at their look on their face and have to try to grasp that it was that bad. Now I kind of avoid the question and have other people tell him the story, and I kind of dance around it, or I even uses a phrase that my Children reside in heaven.

spk_2:   12:53
No, that's nice. I I once worked on a film about ah, family that lost a son toe war, and he said, the father said, I still have five Children. Just four of them are here, and one of them is invisible

spk_4:   13:08
there, waiting on you. So you have. You know, when you pass that you'll be with the other ones.

spk_2:   13:13
Well, this is also true that not everybody goes that way. Now. Not everybody wants to take take that as a za working supposition. But I agree with you. I think that there's, ah, as a father who's lost a child. I had the sense of. It's temporary. I have the sense that will somehow all be together. I

spk_0:   13:32
agree with you,

spk_2:   13:33
you know, in the one hand that's nice for me and for her. But some terrible things have to happen for all of us to be together. So I try to avoid that that direction. Although I agree with you, I think that's definitely important. It

spk_4:   13:47
well, she will know from the loss of a child. There's so many different phases to it from anger. Emotional. Uh, I wasn't even eating at one point. I probably weighed £90 so I've just been through so much. I remember having road rage on my way to work, and I definitely recommend people not to do that.

spk_2:   14:12
Yeah, I was definitely definitely.

spk_4:   14:16
You understand what I meant that you that the anger was filled up so much that you just can't understand why a young child would be gone.

spk_2:   14:24
Well, I actually I have a lot to say there, too, and I'll try to be short. But one of the best things that happened to us and we lost her over a very short time to about 334 days and when, And she was living far away from us so But when we got there and she was in hospital, spent an hour, almost two hour drive and ah, luckily for us, there was a wonderful, wonderful doctor who put us immediately into the picture. He said, You have two choices bad and really bad, and you should know that really bad is that she might wake up and at some moment right there, I skipped over anger and denial and went almost straight into acceptance for the rest of the three days, which was good because I helped ease the rest of the family over that. But not everybody has that experience, and I think we were very lucky. But let me ask you something that I cannot absolutely understand in in any way. I lost a child and I love her dearly. You lost both of your Children. What does that mean? How do you have even cope with that?

spk_4:   15:27
Um I honestly think in my brain, um, I have to agree for one child or the other. I cannot agree for both Children at the same time. So you will hear me focusing on one or the other. And for years I couldn't understand why. Now I realize that that is a coat being mechanism to keep your sanity. I believe you have to bounce around. But I have had horrible dreams. My son would be drowned ing and I would run and saving. I would give him up and he would be breathing. And my daughter would go under the water and be drinking. And I just did this on. I was exhausted the next day and and you understand what that's like. And then you, I've dreamed, did. They're coming to me and I see him and I wake up and you have that sense that you saw him and you feel good for a little bit that day to realize it was only a dream or when you tried to go to sleep at night and use jump, and you realize that you're never going to see him again. Which that does give a little bit better with time. I believe to some extent

spk_2:   16:37
I think everybody feels everybody approaches that differently. I have seen my daughter in dreams, and I have seen her around on Duh. I'm not generally kind of person that goes that way. I mean, it seems to me that that's just not possible, but those dreams Sometimes we're so incredibly riel, and they tend to make me feel good. The attention good?

spk_4:   16:56
Or have you watched a video of your daughter?

spk_2:   17:00
Do you know what I'm a filmmaker by profession. We have about 45 seconds of video of her. That's all there is dancing at at my nephews, wedding seconds dancing at my nephews wedding. That's the only way we have lots of pictures, but that's the only reason we have.

spk_4:   17:18
So I I know to this day I see all the smartphones and people taking pictures of their kids and taking videos, and I often stop and think to myself. Why couldn't we have had in this far advanced? Medically? Not, but even technology wise so I would have that

spk_2:   17:39
well, before we go to break, I'll just tell you that that spooks me. I don't like taking pictures of my Children. My son wants. Since I'm like, Don't take a picture, it's That's the kind of thing they show on the news the day

spk_3:   17:49
after his son's spooks May. I can't do it, but we have to take a hard break. So stay tuned, because in our next segment, we're going to discuss

spk_2:   17:58
with Jackie and Ladin how they move forward after so many losses

spk_1:   18:09
forever by the Baby Blues sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patients.

spk_3:   18:20
Many listeners will understand many of the different songs and what they've been inspired. Our new album will be available

spk_1:   18:27
on iTunes amazon dot com. Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects join music home tonight forever.

spk_3:   18:43
Theo. Heart to Heart with Michael is a presentation of hearts, Unite Theglobe and is part of the hug podcast Network Hearts unite. The globe is a non profit organization devoted to providing resource is to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resource, is pretending to the CHT community. Please visit our website at www congenital heart defects dot com for information about C H D. The hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.

spk_1:   19:26
You are listening to heart to heart with Michael. If you or someone you know would like to be a guest on Michael's program, please email him at Michael at heart to heart with michael dot com. Now back to our program

spk_2:   19:43
Welcome back to heart to Heart With Michael, we're talking with Jackie and Ledeen about what it's like to lose many family members over a long period of time. Jackie, when you look at your grandchildren, is the extension of your own Children. What does this mean for the future of your family? And I know you have a story here.

spk_4:   19:59
Uh, well, I tried Teoh. My grandkids remember absolutely nothing about their mom and that, so I tried to build a men as much as I can remember and let them know things about. I'm showing pictures showing videos, tell him stories about when they were their age, things they did and said, and how they remind me of them because otherwise they won't know anything about their parents.

spk_2:   20:28
You wanted to tell me a story about some magic lotion, I believe.

spk_4:   20:32
Yeah, it was. It was my granddaughter, Lexus when she was two, is when she lost her dad. And so then it was, Ah, two years later, so the Lexus would have been four. She, uh my daughter had passed away and she used to call her aunt Sissy says she would go around when people come to the house. After Chrissy had passed away, she said she had some magic lotion that she could rub on that it was called passing away lotion. If she put this lotion on you, you would not pass away. It was very sad to think that a four year old had been traumatized that much

spk_2:   21:11
that speaks volumes about how much loss she had seen by the time she was for yes. He's sorry she saw her mother. She saw her uncle and they were both very young. So What she do about adults is they could go

spk_4:   21:25
well. She and she was just ah, overwhelmed with me crying. In fact, it was just probably about three or four Christmases ago she was excited and it cold her mom, because I was going to put up a Christmas tree.

spk_3:   21:41
You've seen

spk_4:   21:41
that I put up small ones, but I was actually talking. I can't remember telling her about us going, maybe going Christmas shopping and going to see lights and decorating the house. And she was excited because I just had really celebrated Christmas much since I lost the kids.

spk_2:   22:00
Is Christmas a marker for you that, you know, celebrating Christmas again is a sort of a return to normality?

spk_4:   22:07
Yes, definitely. That's is kind of like I've made full circle once because that was our special holiday Christmas Eve. So and I'll be honest with you. It still doesn't. I'm nowhere near where I was at one point, and I don't I guess I just probably will never be back to that when people say Merry Christmas and I just I just want to get through it.

spk_2:   22:34
Let's talk for a second about normality. Um, we mentioned before during a break that, um, we go on with what we are, it's become a part of who we are. How is this loss? So losing two Children become a part of who you are now?

spk_4:   22:51
Well, a lot of times just say we refer back to 1998 I will say, that's back when my life was normal. So I just have that line that I know that was the last normal in a decade of my life was in the nineties. Um, you just have to change. As time goes along, you just have to take it one day at a time. Because if you try to conquer too much, you'll fall on your face. You will not make it.

spk_2:   23:22
Have your priorities shifted. I know that, um, things that used to be important to me or not. And family New set of things.

spk_4:   23:30
Yeah. And you hear people till, um oh, I've had a horrible day. My tire went flat and I don't say anything. I'm looking pathetic. But inside I'm thinking, really,

spk_3:   23:43
I get a

spk_4:   23:43
phone call that your child's not here anymore. Now that is a bad day. But getting there is not a bad day.

spk_2:   23:53
Well, I'll digress for a second, I once asked Ah, a bunch of people on the Internet to send me some of the weirdest things that have been said about the Children who hadn't died. These were Children with, um, heart defects. And it divides, I think, into into stupid and evil. And it's the stupid people that you really have to be nice to because they're reaching in. No, no, no. I'm serious. That reaching into their innermost depths to find something painful so that they can relate to you. So you're about to give a child over the heart surgery and they say, I know exactly how you feel. My son had his tonsils out when I was a mess. You smile when you say thank you, because they're they're trying. Okay, my wife's former best friend said if I had a kid like yours, I'd kill myself. That's evil. And those people you just avoid you see the world completely differently, and nobody can relate to it. Who hasn't been there? I think

spk_4:   24:43
nothing's the same. Nothing. And I tell you, the weirdest thing is, with my son passed away. It was spring. It was April 15th 2000 And I never will forget the birds beginning to chirp and to this day when I when spring gets here and you walk out to your car in the morning and I'll still look up and think they're still chirping, you know, it has been 17 years, and those birds still keep chirping,

spk_2:   25:08
but you have actually done something that's a change of priority. You've become a very strong advocate for your family, but also dealing with grief and losing Children and the cares future of your grandchildren and your mother and even yourself. We're all wrapped up in this. You've been an advocate and you've been trying hard to get other people to be more aware. I can't imagine that you would have done that otherwise, and that that's a real serious change for you. And I'm assuming also that that's one of the things that drives you.

spk_4:   25:36
Yes, it is, and I feel like if I can get their name out there and I can save a life than they haven't passed away for no reason. If it's help save a life than it is for a reason.

spk_2:   25:51
When the L. My daughter died we we transplanted organs to four separate recipients and that will never bring her back. But that makes me feel that she goes on in a way that's very serious and very riel

spk_0:   26:07
like that lives exactly way

spk_2:   26:11
did and I met. I met a 7.5 year old girl who had my daughter's kidney, and I hugged this little girl and a At that moment, my kidney and her kidney was closest. They had ever been in life. I definitely understand that I need to find meaning, even in death. And sometimes we can. It's not. It's not a happy meeting. It doesn't make me happy that she's gone, but it makes me feel better that we made something good of it. Well, can you tell us what you've done to help your daughter Jackie through this difficult time facing the loss of both of her Children?

spk_0:   26:45
Well, actually, I don't I don't feel like I've done, and on the but, uh, she lived in one place that I lived in another, but we were there for each other. That's that's about all you can say. I was grieving to still, I am but at I think her family like that. It was a tragedy for

spk_4:   27:17
all of us. Yeah. I find our whole family still grieves. I think you know, I've noticed that I I find a lot of people avoid me so they don't have to deal with it. Does that make sense?

spk_2:   27:29
Absolutely. Oh, yeah, for sure.

spk_4:   27:31
I see. Did a lot of people I will see him posting on Facebook and things, but they don't want to talk to me personally a lot because they have to rehash it. Or they know that I will speak of it or they talk to me than Jimmy Chrissy go to the front of their mind, and it's harder

spk_0:   27:47
to push him to the back. You know, Jim and Kristy was what? I won't say my favorites, but they were the one that always gave me the attention. You were always there for Bremen. And now I don't have that mother grandkids or not that affectionate like that. I'm looking a little statue now that Jimmy gave me when he was little boy said,

spk_4:   28:12
I love you, Grandma. And he did love me. And I adore him and that the

spk_0:   28:19
Christie would come to my house for the weekend and may go kind of Mrs Cooking and all that stuff. But in how it was, it was fun. It's fun. Hever. It was wonderful

spk_3:   28:33
of the girl.

spk_2:   28:36
I'm so sorry for your losses.

spk_0:   28:38
That's for you. We're sorry for Your

spk_4:   28:39
loss is also it's very difficult.

spk_2:   28:43
I have a knee jerk reaction to tell people it's OK, and I think it is okay. I think that it's part of our moving on in part of our wrapping it up and keeping it with us. It's OK now. She's where she is, where we are and we're in that sense together and we're okay.

spk_4:   29:00
Maybe we'll be together again one day.

spk_2:   29:03
I think so. I do. I want to thank you for joining us today. Thanks for joining us today. And

spk_3:   29:10
remember, you can find us any time with the Hug Podcast Network at www podcast network dot com On until next time, it's okay to

spk_1:   29:18
breathe. Thank you again for joining us. We hope you have gained strength from listening to our program. Heart to heart with Michael can be heard every Thursday at noon Eastern time. We'll talk again next time when we'll share more stories. If you would like to continue today's discussion, please join us right after the program. In the hug podcast Taproom on power talk.