Living After Death: Rainbow Babies and Healing

spk_1:   0:03
Welcome to Heart are with Michael, featuring 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, leavin 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 it's Michaeli but welcome

spk_2:   0:28
friends to the second episode of the first season of Heart to Heart with Michael, a program for the bereaved community. Our purpose is to empower bereaved members of our community. With resource is support and advocacy information. Today's show is living after death. Rainbow babies and Healing Rainbow Babies are babies who are conceived after families have experienced a stillbirth or after a baby has died, we will discuss the process one woman went through to have her own rainbow baby. We will share who was helping her and how others who have lost a baby might find hope in giving birth to a healthy baby. Life gets a lot more complicated once you lose the baby. Pregnancy is no longer the breezy affair that it might have been before the parents have had the blinders removed from our eyes. Life has brought it home to us that not every pregnancy ends with a perfectly healthy child. There's more to worry about them, the sex of our baby or if the baby should be breast fed. That is why our topic today, living after death, Rainbow Babies and healing is so important here with us today to discuss this topic is our guest, Sherry Turner. Sherry is 47 lost her first born son, William Thomas Turner, 19 years ago toe hyper plastic left heart syndrome when he was 10 days old. After her son's death in 1997 Sherry organized the first CHD Awareness Day in Massachusetts on February 14th of 2000 at Children's Hospital in Boston. After having organized several annual CHD awareness days in Massachusetts, Sherry took a long hiatus to continue her family. She was beginning a nonprofit called the Massachusetts Heart Coalition when her second child, Alison Nicole Turner, was born in 1999. Christopher Robert followed in 2003 and Daniel Alexander in 2005. Raising her young family has been her focus for the last several years and has been instrumental in her healing journey. As her Children have grown, they have helped coordinate efforts to recognize the hard work of the staff of the pediatric cardiology unit of Children's Hospital of Boston each year on February 14th. Well, Sherry, thank you very much for coming onto heart to heart with Michael.

spk_0:   2:39
I'm happy to be here. Thank you for having me.

spk_2:   2:42
It's really very nice for you to be here, and we'll talk more about that later. But let's just get right to it. I know that losing Thomas was extremely difficult for you. So what were the things you did to cope? How did you get on during your initial greeting period?

spk_0:   2:56
Well, initially, I had to lean pretty hard on the people around me. It was shocking diagnosis and, uh, occurrence, and as I'm sure you could understand, but I had a lot of support of family members. My my husband's parents were terrific. His brothers were terrific and my own siblings were terrific. Having them around willing to listen, willing to try and be there for me was, was a big help.

spk_2:   3:30
You have a very large family then or so it sounds.

spk_0:   3:32
I am one of six Children. And, um, my husband has to two siblings

spk_2:   3:38
so initially, then it's very important to have your family in front. I would, I would assume then, that people have smaller families really have to reach out to friends.

spk_0:   3:46
One of the things you have to guard against is feeling reluctant to share about what you're going through. Your first impulse is to try and protect everybody else. Um, you don't want other people to be upset. You don't wanna do things to make them cry S o Often you think sharing what you're going through might do that, and you don't want to cause pain to anybody else. But it's really important for you to let it out and to find somebody that you can talk to.

spk_2:   4:20
You know, I found that it was very easy for me to do that. And I wasn't concerned with protecting anyone outside my family on I was concerned with being big for them and brave for them was that was that part of this for you?

spk_0:   4:33
It was part of it. There were, um there were people telling me that while you can have another are, maybe God knew there was a reason they shouldn't be there any number of things. And it's very easy to get to feeling like maybe it'd be better if you didn't talk about

spk_2:   4:54
how did you feel when people came up with their advice and told you what God was thinking?

spk_0:   4:58
I was very frustrated with that and felt that they couldn't possibly know the mind of God. I mean, I don't know the mind of God. And most of what they tried to say to make me feel better often made me feel worse. And I mean, this is referring to people outside of my direct family.

spk_2:   5:17
Yeah, for sure. And these the people who had advice at the ready in a snap of a finger, they knew what to say,

spk_0:   5:23
right? And it was It was too easy. Um, Teoh fall into platitudes and cliches, and most of them are. I'm sure you understand Bologna. So

spk_2:   5:37
that's very true. If all of that was the stuff that people were throwing at you, one of the real emotions and the real things that you did have to struggle with, not including the stuff that people were sort of loading on top.

spk_0:   5:51
Well, im my the minister who married us, help me to deal with being angry. I was very angry with God when this happened. Because, you know, my faith had been an important part of my life up until that point. And I don't know, maybe I was naive in my faith at the time, but I felt like I should have been forewarned. There should have been some kind of ah hint from from God that this was coming. Losing a child is you know, in my opinion, one of the most horrible things you can go through And, you know, loving God should, in my opinion, have said something to me. Um, but my the minister who married us, his name is Mike. He was very good about accepting the fact that I was angry and he made a point tell that anger is still a relationship with God.

spk_2:   6:52
That's an interesting point, because I always thought that if something like that would happen to me, I would be angry. This would be the moment I would break with God. And in fact, I didn't I can't speak much to my relationship with him personally. I don't know, but I found that I became much more accepting, and questions of faith are, you know, I would never tell anybody what faith is, but, um, my son would tell me you don't have any faith she's gonna get better. And when I said that my faith was that things tend to work out the way they should. That's when I began to realize that acceptance was okay and that I could still have a relationship with God and still somehow keep going. Your thoughts.

spk_0:   7:36
Well, I think, um, I tend to now I agree more with you along the lines of having faith in the work out the way they're supposed to. Um, it's hard for me to choke down. Supposed to, though. That then I admit, is ah, very hard concept for me because I don't I don't see um, our lives. It's scripted. Um, I see them as more you choose your path. So telling me supposed to a sort of predestination, and I'm not really with that.

spk_2:   8:16
I hear that. So let me ask you something else than in along the lines of choosing your own path. You had Alison, uh, two years after losing Thomas, Did you want to get pregnant right away. Were you concerned or when did you feel that you were ready? Really? To go on and try to have another child?

spk_0:   8:35
That's something that I think we allowed to happen naturally and that we didn't exactly decide right away we wanted to have another child. It was unbearable for me to be around babies. Initially, I couldn't. I couldn't cope with it. But I was very close with my husband. He was very supportive and he shared his grief with me. No, we didn't close each other out. Um, and I think the pregnancy was a result of that, uh, closeness and desire to stick together. You hear a lot about, you know, people splitting up over, no losing Children. And I didn't want that to happen to us.

spk_2:   9:22
Well, unfortunately, we have to take a short break here. So first of all, thank you very much for opening up and sharing these emotions with us because I know how difficult that can bay. It's time for a commercial break. Please don't go far. Next will turn to your growing family and how celebrating each new rainbow baby took you through the healing process

spk_4:   9:40
high I'm John Montas of NBC's Hit a Cappella Show, the sing Off 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, an 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 Why again, that's go fund me dot com The Miles Project This is for Miles.

spk_1:   10:10
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 heart to heart with michael dot com Now back toe heart to heart with Michael

spk_2:   10:26
Welcome back to heart to heart with Michael. Today we're talking about Rainbow Babies, and our guest today is Sherry, who herself has raised a large family after her personal tragedy. So let me ask you sure, when you decided to have another baby, were you worried that Thomas's C. H. D. S were hereditary Did you take any special precautions? This timer did you go see a specialist?

spk_0:   10:48
I was worried about whether or not they were hereditary. They didn't show up anywhere in my family, but I don't know. I thought maybe it might be recessive, But even with that, I, um, didn't really take any other precautions other than seeing a high risk specialist, Toby Guynn, to follow the pregnancy. Um, I didn't see ah e a geneticist or anything like that because I felt it. I wouldn't change my mind about having Children whether or not those conditions were present.

spk_2:   11:23
But did you think that maybe that kind of four knowledge would be helpful in preparing If, for example, you were about to have a child who was perhaps again with another CHD?

spk_0:   11:31
Yes, four knowledge would be helpful. And we did get a what's called a CVS chorionic feel. My sampling, I think, is what, And there were some concerns while I was pregnant and we were preparing ourselves possibly to have a child with down syndrome. But that turned out thankfully, not to be the case. And it wouldn't have changed my mind again about whether or not to continue a pregnancy. So I know other than other than preparing to have the half somebody in the home that had medical issues, it wouldn't have changed a thing from

spk_2:   12:10
That's the thing that people often ask me was did you know in advance? And I said, Well, they would have changed my mind and be the only thing that I could have, you know, had by knowing anything in advance would be, of course, preparing myself mentally or physically if we needed things around the house. But I certainly understand that. And I think that's a very in some sense of a brave attitude because a lot of people would be scared to continue. But let me ask you about your second pregnancy and how you felt after Allison was born.

spk_0:   12:38
Well, um, I was very stressed out during the pregnancy because, as I mentioned earlier, they told me that she might have Down Syndrome and was concerned that that might also mean heart problems because many Children with down syndrome also have heart problems. She is ideal, she says. She's a terrific kid. She's perfectly physically healthy. The she's a straight a student. She's the light of my life. Um, I was worried initially when she was born, cause she came out grey and limp, and I had a moment of panic. But once they cleared her lungs and did what they needed to do, she was fine. And it's been nothing but happiness since is first I'm concerned with her.

spk_2:   13:26
Are her triumphs extra? Extra big, extra large? Is something about her that just larger than life because for position in the family?

spk_0:   13:34
You know, I never really thought about it before, but I now that you bring it up. Yes, I do think so. It's almost like a, um, vindication of me as a mother. I mean, just because after I had Thomas, I was worried that I couldn't have healthy Children. Um, and, uh, part of me wondered if it would be wise to continue having kids because they didn't want to bring Children into the world that would suffer. But her birth and the way she's developed as a as a person, has made me feel like the decision to continue was absolutely justified. And, um, I couldn't have been happier with the way things turned out.

spk_2:   14:27
That's interesting is I hadn't really thought of it in those terms, probably because we had healthy Children before we had Leo. So I hadn't I hadn't thought of that. That is in terms of in terms of Indication. But I think that's really important because I think a lot of people are gonna face that. They're gonna have to go over that first hurdle more than you know. Anybody ever thought about one thing that's really that's really find a way to look at it? Let me go on and tell us about the heart health of your other Rainbow Babies. And did you ever have any scary moments regarding their health? And how is everybody doing now?

spk_0:   14:58
Well, um, the heart health of my boys is also quite healthy. Um, and, uh, I've had scares, but they're born like normal scares. My mind's

spk_2:   15:13
enormous year.

spk_0:   15:14
My son Christopher is a little accident prone. Not too bad, but he's done things that kids do. We bought him for his sixth birthday, a Boy Scout knife, and we told him never to use it without Mom and dad right there with him. I walked out of the room Angela immediately used, and we went to the emergency room for Christmas. So you know it. It worked out fine. But, you know, that's that's those are the sorts of things that have happened now, But I don't really have any health concerns with them.

spk_2:   15:50
You know, the reason I get a little bit. Doesn't it feel great to have normal concerns that everybody else has?

spk_0:   15:57
Yes. Yes, it Ah, it actually kind of eases me a little bit, you know? And not that I want him to get hurt, obviously. But But when he does something like that, um, it brings me back to Earth because I can sometimes get into thinking about where would Thomas have been And what would we have been dealing with had he lived? And, you know, I can kind of let my mind run away with that. And when he does something like that, uh, he meaning Christopher, um, it's sort of, um, grounds. Me. It sort of reminds me that, you know, you have these Children to

spk_2:   16:42
I totally get that. You know, Leo was also autistic in the day. I told her to shut up. I felt really good because there was something so normal. Just be quiet. Anyway. We have to go here and take a break for another commercial, and I know that many families were going to be able to relate to your story, and we'll be gaining strength from the sharing between us. And it's a pleasure to hear that things can work out. So in our final segment, I'd like to talk to you about how volunteerism and advocacy has allowed your heart healing to continue. And that story when we come back.

spk_5:   17:15
When I saw somebody of the C H Street groups growing, I found family just written to join May. Anyone who is a member of the adult congenital heart defect community can be a guest on our show way. Have a great year plan that we look forward to sharing other interesting topics. Heart to heart With a hole in David serving a CHD community. Wednesday's at Noon Eastern.

spk_1:   17:45
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:   18:01
Welcome back to heart to Heart with Michael. Today we're talking with sherry about Rainbow Babies and living on after the loss of a child. One of her survival strategies has been a clear sense of volunteerism So short. Let me ask you this. Ah, lot of bereaved CHD parents leave the CHD community shortly after their child's death. How did working with the community help you to hell?

spk_0:   18:22
Well, I I think that even though it's a national inclination to withdraw from the CHD community, I think being a part of it sort of helped me be part of a solution. You know, there was there was no real solution to my immediate issue of losing my son, but I just couldn't leave it alone. That there aren't cures available are there aren't ways to prevent ch ds And so doing everything I could Teoh be a part of drawing attention to the fact that we need research and we need, you know, people who are passionate about finding causes and treatments for people with congenital heart to fix. Just made me feel like I could do something positive and bring light out of darkness if you wanna

spk_2:   19:22
be. Oh, I definitely see that way. And I guess along the same lines. You're not only guest here in our pilot season, but you're also the assistant producer, which is another thing that you're doing. Another volunteer thing that you're doing. Can you tell our listeners how you got involved with this podcast? Specifically us.

spk_0:   19:39
Initially, I had been a guest on heart to heart with Anna and I've known Anna for many years now, and, um, she thought perhaps I would be interested in working with her. I've been talking with her about writing and collaborating on things, and she came to me with the idea of this program and want to know if I want to use my writing skills in script writing in also helping her to search for guests. And, you know, other ways of of helping with the program and for me was Ah, absolute yes, because I anything I can do toe to help people who are going through similar things until what I've been through,

spk_2:   20:24
I find that very interesting. And what is it that you do? I'm going to say in real life that is related to this in terms of writing and other things

spk_0:   20:33
in in riel life? Well, honestly, I haven't had another arena to to do this. Uh, it's not really some. I'm spending most of my time raising my other Children. And so when I have time to devote to this and I feel like I'm kind of making space for Thomas in my heart,

spk_2:   20:59
the size you're volunteerism. We talked about this at the beginning of the program. You work on CHD Awareness Day in every year in February in Boston. What, What what's involved with that? And how do you connect with other families doing that?

spk_0:   21:12
Well, initially, I was kind of surprised at how I got involved in that because I was really, um, part of, ah, A list serve where people would talk and connect and, uh, sort of are helping each other deal with grieving issues. And the topic of raising awareness came up. And there were groups like Little Hearts and the Congenital Heart Information Network, various various groups that were talking about raising awareness, and I was going to initially just be part of that, and I was going Teoh bake a cake or something like I can't remember exactly, but I was gonna bake a cake and bring it to Children's hospital to say thank you to the staff. I think that's what it was. And then people started asking me, Well, what what could they dio um in? I was a little surprised that they were asking me because I felt like completely lost. But I started making suggestions to them toe what they could dio and we started discussing raising awareness in the immediate community, and Theo idea of a proclamation came up.

spk_2:   22:34
I remember the first proclamation I remember when I got started, and I think we're probably on the same list. Serve at the time share. What do you think? Others who have lost the child might want to hear or know from us. What can we tell them? How can we help them specifically? And what have you got for them from working on this program?

spk_0:   22:50
Well, I think it's important that they know that they're not alone and that there are many ways they can be a part of what we're doing. They can be listeners. They can let Anna Gorski know that they want to be guests, and it will help them to identify what's important to them about what process they're going through

spk_2:   23:20
I think is really important. I think people need to air to let out what they're thinking, and they need to know that what they're thinking isn't wrong or scary and that they're not inventing the wheel on this. This is not the first time it's happened, and they can benefit from sharing with the rest of us. Tell me a little bit more about CHD awareness and how that's been helpful to you and how others conjoined in with that.

spk_0:   23:43
Well, what one of the one of the ways it's been really important is it keeps the memory of Thomas alive and makes me feel that I'm bringing some light out of the darkness because sometimes when I'm feeling very, particularly grief stricken, uh, it's hard to feel, um, that there's any positive. But by contributing to raising awareness and encouraging people to speak about their grief, letting people know that what they're thinking is not weird or even if it is weird, its okay, Yeah, I think the public speaking that I've done and have encouraged others to do, uh helps to sort of find the community together more in the podcast. I think that we're doing is a big help to reaching out to people who are maybe feeling completely alone because that's some. Some people don't even have the support of their immediate family because it's it's, Ah, tough sometimes to talk about your grief.

spk_2:   25:00
I understand that I do. I think what you said was very interesting, that looking for a positive, turning a negative into a plus and there a lot of things that you can do for that. And some of it has to do with, um, you know, just remembering somebody making a small film which is now more and more easily done at home, or getting together once a year with family and friends and talking about your loss. I think that's very positive. The last thing I want to ask you about is people who are deciding or not deciding to have a rainbow baby, and I'd like to hear your thoughts on that decision process

spk_0:   25:39
well, for me, Thomas was my first born, and, um, I hadn't been more joyful ever than the time that I gave birth to him, because when I gave birth initially we didn't know he had a problem in contemplating going through the rest of my life without experiencing that again. I just felt I that would be too sad. Um, so, you know, for us having more Children, um, did a lot Teoh buoy my spirits and make me feel as though I could have positive things in my life. So for me, having more Children was almost a must. I I was scared. I was concerned about what might be going to happen again, but I had to take the risk. So, um, for me, for me, it was about, you know, chance taking the chance to open my heart up again.

spk_2:   26:52
That's beautifully said. And I think the only thing I would say to that is that you face that after your first child. And then there were the questions of ability and validation, and I think that's totally, totally important. The l was our third child, and we actually made the decision that we were going to have another child and we lost that one too. So sorry. Well, that's okay. I mean, it was it was a miscarriage in. We've had several before. We had our first child, so we were sort of used to that. But, um, and then after that, we decided, Okay, we have our Children and we're OK and we're done and we're very, very proud of our Children. And they've grown up to become marvelous, wonderful adults. So I think that that I see what you're saying and I think there's two ends to that and it's really critically important and different. If you've had Children before or after and having settled that, I just want to thank you again for joining the program and for opening up and sharing your innermost thoughts, because I know that's the most difficult thing there is. But it's the best way that we know of to help other people. And I hope people listening. And I hope people are, are gaining from this. And if they have anything else, they want to say that please make contact with us and would be happy to talk more about that. That concludes this episode of Heart to Heart With Michael. Please tune in every week on Thursday at noon, Eastern to listen to our program for the first half hour and then to talk with us for the next half hour so we can hear your stories and answer your questions, please find us on Facebook. Check out our website heart to heart with michael dot com. And remember, it's okay to breathe again.

spk_1:   28:30
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 chat room on PAL talk.