Episode 2: Who Am I Now?

Episode 2: Who Am I Now?
Featuring Katie Witsoe and Andy McCall
St. Jude Expert Brent Powell

Standard Introduction by Justin Baker, MD

Connecting Through Grief When a Child Dies is a program for bereaved parents created by St. Jude parents who have experienced the death of their child.  I’m Justin Baker, Chief of the Division of Quality of Life and Palliative Care here  at St. Jude Children’s Research Hospital in Memphis, Tennessee.  

This podcast is hosted by one of our parents, Penelope’s Dad, Andy McCall.  Andy is a good friend of mine. He is a father, a husband, a 2nd grade teacher, an author.  It is through Penelope that Andy’s relationship with St. Jude began.  Penelope was treated at St. Jude when she was just over a year old.  Penelope did not survive her cancer and peacefully passed away at home just before her second birthday.  When you listen to Andy, you will hear him introduce himself as Penelope’s dad – because he is and always will be.

Andy’s Intro

Hey, I am Penelope’s dad, Andy and in this episode, you will be hearing about those nagging questions like:   Who am I now?  How long will I feel like this?  Will I ever be happy again?  I asked myself all these questions and more.  Today, I will be speaking with a mom about those questions, the ones that all bereaved parents face every day after the loss of their child.  You will also hear Brent Powell, chaplain for St. Jude, offers his thoughts about our conversation.   Let’s listen.

Katie: Hi, I'm Katie Witsoe and our son, Sean was diagnosed with medulloblastoma when he was 3.5, and he passed away when he was 5, just two days after his fifth birthday. He actually has a twin brother, and so we celebrated his birthday. And then two days later, he passed away. We have, in addition to Sean, four other children, as I mentioned, including Sean's twin brother, Matthew. And he was just the light of all of our lives, and we miss him every day.

Andy: We definitely do. We definitely miss our kids every day. I think the biggest question we all have is, ‘ Who am I?’ Did I fail? Did I do something wrong? Or am I still a parent? Am I Dad? Are you still Mom? What do I do now? And I think everybody thinks I'm so sad. And I don't even know how I can take it. Is this ever gonna end? Is this feeling gonna go away? And sometimes I even ask myself, I don't even know how I'm gonna get through this day, much less think about the future. But what I want everybody to know is we all have these thoughts. And you're not alone when these thoughts go through your head. And Katie, that's normal, right? That's normal for us to think that, especially right after it happens.

Katie: Yeah. I remember shortly after Sean died, and for probably a couple of years, in some ways, I felt like I was walking around in a daze. The world was still spinning around me and things were happening. But in some weird way, the events of Sean's death and the fact that he wasn't with us anymore grounded me in a place that I felt stuck a little bit, and I just didn't know what to do with that, and I didn't know what to do with those emotions. I had a good friend who I met about a year after Sean passed away, and her son was also a St. Jude patient. And she was 10 years out, and I remember sitting with her just asking her, "Does this ever get better?" And now we are 10 years out, and I understood her answer was, "It changes, it gets different." And I understand that now, but at the moment I was like, "I don't know what you mean but... I don't know what it means to change because this hurts so bad." I just can't. It just seems like you can't live with that pain, sometimes even another moment longer. I don't know if it was like that for you, Andy.

Andy: Definitely. My emotions were all over the place. I would feel sad, and then I would smile because I'd look at her picture, and then I'd go back to crying and four or five other emotions because sometimes that was before breakfast. That was before I even...

Katie: Yeah. So true.

Andy: ...left the house and try to start my day. I think what I was so worried about I was like, I can't concentrate. I can't even think about all these other things. Like you said, the world didn't stop. Our world stopped on that day. When Penelope died, part of me just stopped.

Katie: Yeah. Me too.

Andy: The world kept going and I know we still had to live in this world and keep going. And like you said, you had other kids and you had other kids take care of them. Penelope was our own, so we were left with just us. And I wanted so bad for this and I think we all want so bad for this healing to be linear, like, "Okay. I feel bad right now. When is this gonna stop?" Did you think that too? I was like, "I want a plan. I want some plan."?

Katie: Oh, yeah. For sure. I sought out conversations with people to find out, was what I going through normal? I still sometimes wanna even talk to people who are further out from this journey and say, "Okay. What is it like now 20 years, 30 years?" I want to know. I don't know for you, Andy, but sometimes good things will happen to the family, it's one of our other kids. It's just a good event. But even to this day, I still can't say it's perfect. What a perfect thing because Sean is still missing. And that to me, I wanna know, does that ever change? And part of me thinks that it doesn't and I've realized that it's going to be like that, and that's okay. So, that was the other thing that I was trying to reconcile was, was feeling like this just...was that okay? Was it okay to just be in this grief process? And that took a long time to figure out too like, "Yeah. It is." You can't change that feeling of loss and sadness. You can get up, you can make the most of things, but there are days where you're just gonna be sad, and that is okay. And it's okay to be okay with that. I don't know if that makes any sense.

Andy: That makes perfect sense. And I think that's one of those things that we need to hear is, whatever you're going through and whatever you're feeling, that's okay. That's okay for that moment. And part of this grief journey is learning how to deal with those. I know there were two instances that came up with me. It was the first time we were sitting there watching something on TV and I started to laugh. And I said, "Wait, wait just a minute. Can I be happy? Is that okay?" I felt guilty almost for laughing and being happy for that little moment because the other 23 hours of the day, I had been sad.

Katie: Yeah. That's a hard one.

Andy: That was one of those that just came up and I didn't know if that was part of it. I've come to find out that it is and that is okay. And the first time for me when I heard somebody else say Penelope's name, that was big for me. I say it all the time and I say it. And I see her name and I see her picture, but to hear somebody else say it and not have her here, that was big. It just felt like it echoed in my head for minutes and I didn't know how to react. Were there any situations that came up with you at the first you were like, "Man, I don't even know how to react to this."?

Katie: Yeah. It's funny when you said you'd love hearing her name. And I think so many people are afraid to mention your child after they die, or they don't know how you're going to react if they talk about him or her, or instead, they do shy away from either talking about them or even saying their name. But I had to explain to people I'd love to talk about Sean. I'd love to hear people tell me what they remember about him. And even just now, when you introduced me as Sean's mom, nothing makes me happier than when somebody is like, "Oh, you're Sean's mom." And especially we've been able to go back to St. Jude because that's what it was like, "Oh, you're Sean's mom." I'm like, "Yeah, I am. Thank you so much." That just means... I just love that. It's just so special.

Andy: We're at a place now we can talk about that, and I think that's with a lot of parents starting this grief journey, they're like, "How do I even do this? How do I even get to the point where I can be okay to say their name and go back to these places and go back to some sort of life after it stopped?" And what I've learned and I know you've had it longer than I have, you've got to put your oxygen mask on first. And you've got to work on you and figure out what works for you before you can take care of anybody else or the world around us. Would you say that's fair? Would you take care of you first?

Katie: Yeah. It is true. It's interesting because when we found out that Sean was terminal and we were sitting there with the child life therapist, and I think I had Sean and a couple of the other kids with us at the time and I said, "Should we find somebody to help the kids? Therapy to help the other kids." She said yes. And she said, "Because you're gonna be busy taking care of you." And maybe she didn't use the word busy, but she said that, "You're going be in grief." And of course, I didn't know what that was going to feel like at that moment to understand how difficult that was going to be.

And then we went through it and I was like, "Okay. This is what she meant." That it's going to be hard and the kids are also going to need somebody to talk to because sometimes things are going to be hard for me. I might not be able to put in the effort. And I feel very fortunate that I was able to put in the effort with the other kids and make sure they were doing okay…. but there are certainly times that were difficult in grief, and I was grateful for the extra support. And I think that's super important for all families.

Andy: Yeah. Definitely. We definitely didn't choose this life and this bereaved parents club that we're in, all these challenges that we face, but I think it's important to know that we do have control how we let these challenges affect us. Like you said, you got the kids some help and then you were able to help a little bit. And I know with me, before this, I was a very sociable person. I loved to be around my friends, I needed to be around them, but that changed. And I didn't know who I needed to be around, or if I did, and then when I went around people, I felt like I needed to go back in a shell. And then that made me question, "Am I okay?" And I'd lose sleep over it. And we know we have to take care of ourselves in that way. Did that happen to you? People are either social or private. And even with my wife and I, we grieve differently and I didn't recognize that at first. And that was a challenge that I think we needed to put first and foremost is take care of each other, but realize what each other is going through as well.

Katie: Yeah. I think that's a really important point because I always need a little bit of time to myself. And my husband, he is the one wanting to go out and do things and be around people. And I think in grief, it became even more so for each of us. So, I then wanted to be by myself even more often and he wanted and needed to be around people more often. And I always felt like when I was around people, it just takes so much energy to be included in life and in their conversations. And so it was particularly draining for me. And for Craig, I think it gave him an escape when he could be around people that he could just be in that moment and experience what was going on, but it took so much effort for me to do that.

And I remember my birthday was coming up, and it was the first birthday I was going to have after Sean passed away, and Craig decided he was going to invite quite a few people over and he tells me this the day before. He's like, "Oh, I've invited all these people for your birthday." And I shook my head and was like, "That is so not what I want." And it was in those couple of days that I realized this is what he needs, so I need to make an effort for him because this makes him feel good. But then I think he also realized that that's not what I need and so we had to find a balance of what worked for both of us because yes, we were both grieving. We did grieve differently, but then we would find some commonalities and ways to actually help each other too because I think that can be super important if you can find a path to that to help other people that are close to your child, help them in their grief too, but particularly, a spouse or significant other.

Andy: I found myself grieving alone sometimes. I would just go into the room, and I just needed to be alone. And sometimes I think that was really good, but then sometimes I felt like I couldn't get out of that place. Did you ever have that feeling at all sometimes like you just couldn't get out of that dark place?

Katie: Oh, gosh, yeah. There were some times were the same thing, I would just go grieve alone. I remember I would... I like to run and so I would go out for long runs. And, oh, man, it's really hard to run and cry at the same time. You just can't catch a breath. So, then I would just have to stop and walk, but I was definitely there alone. But in some ways, I felt like that really helped me because I would have that time alone and then I could come back and be present to Craig or to the kids. So, I feel like that helped me.

Katie:  I wanna go back to something that you brought up about communication, and I think that you are so right to be able to talk about communicating, especially in the early stages of grief because you might be able to help each other in that or help your kids in that. And looking back, I wonder if somebody had told me, "Make sure you're communicating." I probably would have heard them. I don't necessarily know if I would have had the ability to do that though. I don't know if that resonates because grief is so all-encompassing that I don't know if I would have been reflective enough to be like, "Oh, yeah. Somebody told me make sure you talk about it," because there's just so many other emotions going on.

Andy: There are. I think that's one of those things we just have to deal with every day is, "Okay. I can deal with these emotions." They're gonna happen, they're not going away. And we just learn over time what works best for us. You never know what tomorrow brings, but you know you can get through. And I think that's how I had to look at it after I got a handle on some things.

Katie: Yeah. And in the end, I think the conclusions that I'm coming to right now is that it's not even just stages, it's a lifetime of grief. With this loss, it's going to be a lifetime. The ups and downs are getting spread out a little bit further and so I find that comforting. And it doesn't mean I don't miss Sean any less, it's just as my friend said, it's just changes and it's different.

And I think that's so important and I wish somebody could have told me that when I was in my early stages of grief like this is just a long, hard road. And you have to give yourself some grace. Because I kept waiting to feel better, I kept waiting to feel different and it just didn't come. They say you get through the first year, and then it's going to be better. And in fact, in my case, the second year was probably harder for me because I feel like some fog had gone away and then I was just stuck in this very hard grief. And then maybe by the third year, I was like, "Okay. This is the way it's going to be and that is okay because my son died." And I shouldn't feel like I need to be okay that it's not okay that he's not here.

St. Jude Expert Brent Powell:

My name is Brent Powell, and I am the director of Spiritual Care Services at St. Jude Children's Research Hospital. I've been honored to serve the patients and families of St. Jude for 34 years.

The experience of the loss of a child is the greatest loss one can incur. It makes you question yourself as a parent, it makes you question everything you've ever been taught, everything you've ever believed. And it puts you into a feeling of free-falling in space as if there's nothing to hold on to or to hang on to.

I think when a person loses a child, they have to re-examine their identity. And it's a really long and gradual process

Another way to talk about that is to say that tragedy and grief open our eyes to a new reality. I hear the parents refer to it as a new normal. And in that, it opens our eyes to a way of looking at things that is different from the way they looked at things prior to the death of their child. And so the person has to create a new meaning, a new way of assigning  meaning to not only their child's death but to what their life is going to be going forward and what their family is going to look like as they move forward.

Andy: You know, Katie, We have to take it step by step, day by day, and sometimes minute by minute. And I think, for me, that's how I found how to get through this, especially at the beginning.

Katie: Yeah, I think we get bogged down in what we think that we should be feeling. And I don't even think anybody could tell you that they have a normal grief experience because I don't think there's a normal one, it's just what each individual person is going through. And this is such a significant loss that, you know, it's just going to be all over the place. And I really did sometimes feel like I was going a little bit crazy, like, why couldn't I focus on something, or why was I so terribly sad, and then you know it's your child died, but I think you maybe put pressure on yourself to keep going. And I don't know about you, Andy, too, but for me, sometimes other people put pressure on you, too, because they want to see you feeling better or doing better or... You know, I had one friend who said, "Oh, you know, she's coming back to normal." I was like, "I don't know what that's supposed to mean." And I don't know, I found that to be a really strange statement. You know, what was I before? Or why do, all of a sudden, feel like I'm back to the old person that I was because I'm not.

Andy: Grief is hard work, it is something we deal with every day. And I think the sooner we accept that and accept that, hey, you know, I'm not that person I was, that life  isn't going to be the same, you know, then we can start that grief journey, and whether you want to call it healing, or whether you want to call it just trying to make it through the day. What do you think helped you most with your grief? I know, for me, at the first, I kept everything inside. For me, I found that talking was the best thing that I could have done and I wish I'd done it sooner.

Katie: Yeah, I would have to agree. I think that, for me, it was being able to talk to other bereaved parents. They just helped me feel like I was in a space that was safe, but that they also understood without even having to say anything, what we were all going through. We could talk about our kids, and nobody looked at me as if, "Oh, you know, is that going to bother you?" Because we all knew that it was good for us to talk about our kids. And so that was always... And even sometimes now continues to be a very safe space for me. I'm glad that people aren't around a lot of people who have lost kids, of course, but I am so grateful for the friends that I have, that have gone through this because I think they, at least, they helped me sort of feel like, "Okay, I am not going crazy, this is part of the process." And I really needed that. And I k  now other people have found different ways that helped them, but that was probably the biggest thing for me that at least helped me get by some really, really hard days.

Andy: Yeah, when I'm around those families and bereaved parents, and talking about Penelope, and I hear you talking about Sean, it makes that a little bit brighter. And it makes...whether it's for that minute, or sometimes it lasts all day, and sometimes it sets me up for the week, I think the important thing that I learned for myself was, it is okay to talk about it. And it's going to be different for everybody. And I wasn't ready at first, but when I did start talking, whether it was just about Penelope or my emotions, and Katie, I think you can say the same, is, you know, we can talk about our kids forever. And that put me in my happy place. And I learned that I dealt with those emotions while I was talking about her.

Katie: Did you have friends who it was hard for them to hear you talk about Penelope?

Andy: Definitely. I think that was... I could tell it was making them uncomfortable and they wanted to be there for me. And I think having those people that understood me, let me get that out because I found that when I saw my friends sort of getting uncomfortable, and then I'd start holding those emotions, and again, I needed to get them out. And people just don't know what to say. We don't know what to say sometimes, and that's our new normal.

Katie: Yeah, that is our new normal. Yeah, we don't know... Yeah. People don't know what to say to us, and like you said, sometimes we don't know what to say. But yeah, I always found it a little bit hard when I would talk about Sean, and I could see other people getting uncomfortable. Because that didn't make me uncomfortable talking about him, but seeing their discomfort. And maybe that's why sometimes I shied away from groups early on because I was okay with talking about it. And I wanted to be okay with that.

Andy: I'm with you. And I think that's one of those internal conversations we have to have with ourselves and whether it's in the bathroom mirror, first thing, end of the day, say, "Okay, I can do this, you know. I can talk about Penelope, or Sean, or any of our children that come to mind." But I think the sooner we do that and sooner we have that internal conversation, the sooner that external conversation is going to happen and let us start healing as well.

Katie: Yeah. You know, it's funny you also talk about grief being hard work. I mentioned that I run, but I used to use the analogy with people, it's like dealing with grief, for me, so I could try to have them have a way to understand this, it's like getting up and running a marathon every single day even if you didn't want to run that marathon, even if it was raining, even if it was snowing, or you're tired the next day, you still have to get up, and essentially, run the marathon of grief that day. And some days I still feel that. When I wake up, and, you know, I always know Sean is not here. And it's a different feeling now than it was in the early stages, but it still is...it's just a heavy burden. I don't know if you feel that, too.

Andy: I do. And I think that's the perfect way of putting it is we run that race every day. And going back to those questions: who am I now? And am I still a parent? You know, the answer is yes, we'll always be their moms and their dads. And no, we didn't fail. sometimes that's all we need to do is just talk about them. And that gets us through this day in this new normal.

Katie: Yeah. And I think, you know, when you ask, who are you now, I feel like that changes too from, you know, perhaps once...you know, the first couple of years after your child dies, you might feel one way and then a couple years later, you might feel another way, you might answer that question in a totally different manner.

Andy: know you made me feel better and made me feel more normal. And I know just talking to you right now, Katie, has helped me feel better about what I'm going through. So, I appreciate you.

Katie: Yeah, you too. And yeah, I'm thinking the same thing, like, when I hear you talk about Penelope, I just start to smile, because I know what that means to you, to be able to talk about her and be able to talk about our kids, and that does make me smile. And what's interesting is that can make me smile, and then sometimes it could make me sad, and those emotions seem to go sideways and upside down and spin you through loops. And I guess the goal is to just end up on our feet.

Andy: It is, for sure. And, you know, I won't...

Katie: It's many days on our knees, too, but...

Andy: Many. Absolutely. I just want everybody to know that we're here for each other, no matter where you're at, bereaved parents get each other. And I think that's what helps us get through this journey we're on, is just being there for each other.

Katie: Yeah. And to be there for each other and also take care of yourself and don't put too many expectations for perfection on yourself during this journey. It's not ever going to be the same. And I think that's when I realized that in this grief journey, things started to shift a little bit for me in sort of feeling comforted by knowing that. Maybe early on,    I felt like things maybe one day would go back to normal. I don't know why I thought that like, "Sean died, why would I think that?" But I think in my head, I felt like it should. And then I learned that it's not going to. And that is fine.

St. Jude Expert Brent Powell:

When a person loses a child, it’s helpful for them for people to talk to them about their child and to try and have a conversation about who the child is, who the child was to them because that helps assign some sense of meaning to the circumstances. I think people feel that if they bring up, to a bereaved parent, anything about their child that they may be inflicting pain or causing them to remember difficult things, but that's a myth. And it's incorrect. What we know is that it's very helpful for them to have those conversations.

Accepting the reality of the loss of your child happens gradually and over time. But you do have to live with that and acknowledge that that's going on. You have to feel the pain. You don't want to utilize other methods, substances, you know, getting an extra job, doing busy work, doing things to try and avoid the pain. It is essential to feel the pain. You have to explore your new identity. What does this mean to you? Who are you going to be because of this? How are you going to take what you learned from your child and pay that forward? While we may grieve individually, grieve privately, or grieve with just our own immediate family, we always have to try and be open to the possibility that other people are able to support us, and to lift us, and to us up.

Certainly the most common questions I hear as a chaplain are the why questions. Why did my child get cancer? Why did my child die? And the truth is, there are no answers to those questions. I think what people are really struggling with on the inside, ultimately in relation to the loss of a child is this, "Can I survive the loss of a child? Can our family survive the loss of a child?" And so I would like to just say that you have lived that out, you have and are surviving the loss of your child. And so you have shown that it isn't necessary to understand why, it's that you have a trust and you have faith that the best way to honor your child's life is to choose to move forward, to choose life. Your child fought so valiantly and so bravely to try and defeat cancer. And the best way that you are now honoring the life of your child is to choose or is in choosing to continue to move forward. I think that's very, very important.

Standard Closing by Justin Baker, MD:

Thank you for listening to Connecting Through Grief When a Child Dies.  Special thanks to Stanton Lanier, Copyright Music to Light the World, Inc., for allowing us to feature his music throughout this podcast series. Please share this series with friends, family members and anyone walking through their own grief.  To learn more about grief and resources for support, visit www.stjude.org/bereavement.