Episode 4: Grief is Normal - Tears & Longings for My Child

Episode 4: Grief is Normal - Tears & Longings for My Child
Featuring Tasha Ives, Lisa Musser and Andy McCall
St. Jude Expert Jennifer Allen, PhD

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’m Penelope’s dad, Andy and in the beginning of my grief, there were so many emotions and with that came a lot of tears.  I never really cried before but after losing my little girl I seemed to cry all the time.  In today’s episode I will speak with two moms about the beginning of their grief journeys, their tears, and if all the tears were a part of their grief.   You will also hear Dr. Jenn Allen, a St. Jude psychologist,, share her thoughts related to emotions and grief.  Let’s listen.

Lisa: I'm Lisa Musser, and my son Thomas was diagnosed with leukemia in 2005, and he passed away in 2010 after 5 and a half years of treatment and a couple of bone marrow transplants.

Tasha: I'm Tasha Ives, and my 9-year-old daughter, Sydney, received a terminal brain tumor diagnosis in 2008, and she died in 2009 after an 18-month journey.

Andy: I know everybody has a different story, but I think we all come together when it comes to tears and longing because we all do. Do you think there are benefits to these tears? I tried to hide them at the first. I really tried to hide my tears because I was supposed to be strong, and get through this, and all that you say to yourself to try to make it through the day. But is there power in crying?

Lisa: I think there definitely is. I think we all feel some pressure to sometimes hide those tears. I felt like I needed to hide them to some extent from the rest of my family and from my children. But then, I learned that they weren't seeing an appropriate expression of my grief and that sometimes I needed to let them see that. And I come from a family that does not show tears, and show grief, and show emotion very much, but we've learned through some counseling that that was very important, especially for children to see us appropriately grieving.

Andy: I didn't know how to cry in front of some people sometimes, like, "Should I?" You know, there's all those questions. But when I got done crying, I felt better.

Tasha: I'm not a good crier. I don't do it on purpose where I don't really cry in public. It's just one of those things that kind of is. And I was thinking back to why that was. My mom's side of the family is pretty emotional. Like, they'll cry and it's no big deal. But when I was young and my grandfather died, I remember crying, and everybody made a big deal out of it, and I didn't like that. I didn't like that everyone was like, "Oh, she's crying. Oh, let's go, like, console her or comfort her." And I think I kind of just decided to keep that for when I was alone.

But I see the benefits of it. Because sometimes, you just can't help it, and I would kinda push it away as much as possible to not cry. Often, I kind of felt it almost like if you're, like, nauseous, right? So, if you, like, are sick to your stomach...nobody likes to throw up. So, if you're sick to your stomach, the last thing you wanna do really is throw up because nobody likes to do that. It's not a very, you know, welcoming thought. But you know the minute that you do, your stomach's gonna feel better. And that's kinda how I feel about crying. It's like I really don't wanna cry. I don't wanna go there. I don't wanna go through all of this stuff. I usually try to hold it at bay as much as possible. But when I finally go there, it's like finally out of my system. The thing that was making me sick or the thing that was making me want to cry is finally out. And then, you kinda feel better on the other side of it.

Andy: Yeah. So, I think the big thing, it's okay to cry, and you need to give yourself that, you know...I don't know what's a good word for that.

Tasha: Permission?

Andy: Permission. Give yourself that permission to cry. Because, like I said, if you're a dad and you're like me, the last thing I wanna do is cry in public. did you all worry about that? I mean, crying in public or crying somewhere that somebody's gonna judge you? Because that's a whole another level to the grief process of worrying about what others think on top of what you already think.

Lisa: Sure. Yeah. I think that I would sometimes, if I felt like it was coming on, I would explain to someone, "I do wanna talk about Thomas still. I do wanna still have this conversation. I might tear up, but that's okay." And I think that was part of maybe teaching them in some way that it's okay to cry and it's okay if our conversation makes me cry. That's actually a good expression, and that might happen, but that's okay.

Tasha: I think that's it. I think it's not so much feeling judged, like someone would think I was weak, but I felt like I was adding discomfort to someone else who was there. So, you kind of tend to hold off to where you're not causing someone else discomfort. So, I think that's awesome that you came to a place where you can say, "You know what? I might tear up a little bit. It's okay. I'm good. I'm fine. You don't need to, like, pal over me, and comfort me, and rub my back. You know, like, I'm cool. I can shed a few years, and I still wanna talk about him." Yeah. That's awesome.

Andy: We're gonna cry, we're gonna have those tears. But, for me, when I had to do things like go back to work or I had to meet people, you know, I tried to hold it in, but then when I got back to my truck, or my car, or something, I mean, I let it go. If somebody saw me sitting there, they probably thought I was going crazy. But that was my safe space because it was me, I could turn whatever music on and just cry. And it happened sometimes once a day, sometimes twice a day, sometimes I had to stop what I was doing and go out there, you know? Did you all have a safe space?

Tasha: I think the car, it's like the universal safe zone for all things. So, like, I chew people out when I'm sitting in my car, you know, like, "I can't believe that guy just said that to me," or whatever. Or sometimes I have really hard conversations with God in the car. You know, I drive around, and it looks like I'm talking to myself, and I'm praying. But that's also the place, you know, you go for a drive or you go sit in a parking lot somewhere because you feel like you're untouchable in there, like nobody can get to you in your car and you can just kind of let go.

Andy: I didn't think about it that way you do. You know, nobody can get in your space right then. You have to let them in your space.

Lisa: For me, it was the shower. Same thing. This is personal space ...and it was also a time when my husband was taking care of the other children, I could actually just relax and be able to really give in to my own grief then, everything else was taken care of for a few minutes. And it was in the shower for me.

Andy: They're not all sad tears, you know? And I think we feel weird about that too, is you cry those happy tears. And that's very different to think about. You're grieving, but you're still happy. Because, for me it, was thinking about something about Penelope that, yes, I missed, but it made me so happy to remember that, that I started crying. I started crying then, and I'd have to run out to the car, or the shower, or something.

Tasha: Well, the two emotions are pretty close together, right? Because people will crack up laughing, and what happens? They cry when they're laughing. So, they're really closely connected. It would make sense that those emotions are just kinda all stirred up in us.

St. Jude Expert Jenn Allen:

I’m Dr. Jenn Allen and I am a clinical psychologist at St. Jude Children’s Research Hospital. As Tasha mentions, grief and joy are pretty close together. In fact, all of our emotions are, and it is quite common for people to have mixed emotions – that is, when we have contradictory feelings. Despite this being a normal experience, especially among bereaved parents, it can make the grief process more challenging and sometimes you may not even know what you’re feeling, exactly. Particularly early in bereavement, it is common to experience separation distress, which is a combination of yearning for your child, feeling angry, and anxious.

Andy: I could say Penelope, and Sydney, and Thomas, and I know that there's that little smile that comes up when we hear their names. I know it gives you that rush of sadness, but then again, you're like, "Man, that's Penelope," or, "That's Sydney," or Thomas, and, you know, you just can't hide it. But is it always gonna be that way? You know, do you think it's gonna be? Were you scared to hear their name? Did you wanna hear their name? Because I know some people, as they're trying to help us through this grief process, they don't know whether to say, "Thomas," or they don't know whether, "I shouldn't talk about Sydney or not," you know? Is that something you went through or...?

Tasha: I don't think I ever dreaded hearing Sydney's name because I think their presence...her presence is still here. I love to know that people are still thinking of her. You know, like other people mention their friends' kids' names, and it's kind of a common thing. And so, I've always, personally, really felt comfort in hearing her name. That's me though. Sometimes I'll get caught off guard like, if someone posted a picture, like, on social media, Facebook or something, that I wasn't expecting to see, maybe a picture of them with Sydney, maybe I didn't know it was out there somewhere. Sometimes those things will catch me off guard and kind of, you know, pierce a little bit before I can really take it in and then kinda smile about it. But yeah.

Lisa: I think I was surprised in early grief how often I heard when we were watching college football...I told my husband every player's first name or last name seems like it's Thomas. And so, early on, it was hard to hear it for me. And then, I realized I wanted to hear it more. I didn't hear it as much as any other children's names, so I wanted to hear it more. And the first time, it was actually a child in Thomas's class that said...he saw me later and said, "Oh, you're Thomas's mom." I thought what a treasure to still hear me associated with him as his mom. Oh, that was just wonderful. So, now, it's such a precious thing to hear his name.

Andy: Yeah. Because I think, internally, I'm always Penelope his dad, but yet to get recognized as Penelope's dad is it...I don't know, it hits the heart really good, you know? It makes me feel good that somebody could do that.

Tasha: I have some friends who have lost...either miscarried or have lost a child very, very young, but that they were able to name their child. And I've asked their permission, I said like, "What is your child's name?" Because we get asked that all the time or our child gets brought up in someone's memory at some point, but these children aren't necessarily a part of a memory for someone else for them to just bring it up in their everyday life.

So, I always ask what their child's name is. And then, in the course of my conversation with them, say that name as often as possible, "I'm sure you miss..." you know, whomever. "I'm sure that was a big piece of your life, is a big piece of your life." And they appreciate hearing the name of their child because they don't hear it in other conversation anywhere. So, there is something powerful because you take the time to put thought and there's emotion behind this name that you give your child that they're going to be called forever. There's something very meaningful, to be able to hear that. It doesn't just go away.

Andy: You know, I think that hearing and saying their name's one thing, but I know after Penelope died...and I think pretty much everybody goes through this, is all I did was want to hold her one more time. And I wanted to play with her hair one more time. And I made more deals, and promises, and prayers, and thoughts with God or whoever I wanted to scream at that day to making that happen, you know? Did you all have that ever? Do we still have that? I mean...

Lisa: Yeah, I'm not sure that ever goes away. But what I remember and wish for is Thomas sitting on my lap. So much during treatment was waiting and sitting in the waiting room or sitting in the room waiting on the doctor, and just that feel on my chin of his...where he lost his hair through chemo or whatever. You know, just that feel. And I still feel it today, and I still, you know, almost 10 years later, can feel that and miss that.

Tasha: Sydney and I, since she was 11 when she passed away, but we had this thing. So, we would go drive. Sometimes that was all we would do, get out in the fresh air, open the sunroof or whatever, and take a drive. And we would hold hands while we drove and sang, you know, Jonas Brothers or whatever her thing was that she was listening to, we'd sing really loud and drive around.

So, I found myself, every time I was getting in the car, putting my hand over there after she died to hold her hand, and it was unbearable. Talk about the moment in the car when you just wanna hold their hand. So, I put one of her little penguin stuffed animals. It's like a little, little, tiny one and I would just grab it and...I left it there, and then I would just grab it and drive with that in my hand. Because my hand and my arms felt so empty, so I would just have to have that. And there was just this, "All right." And then, I'd turn on the music and kinda sing the same thing. But it definitely was missing that...it was empty, you know?

Andy: I still go everywhere with Penelope's bunny.

Tasha: That's right, you do. I've seen it.

Andy: Everything that I do, I take her bunny with me. And that's my way of being okay for that time or experiencing something new or something I'm longing I wish she could be a part of. And I had to explain to a couple of people, like, why I had that. They're like, "Oh, what's this big 34-year-old man carrying a bunny around?" But, for me, I didn't take that as bad, but I took that as a, "Oh, I get to talk about Penelope." it helped to have those safe conversations too.

Tasha: We have a Henry bear. It's a bear that my grandfather gave Sydney...his name's Henry...when she was two, and that was in every MRI and went in with every procedure at least till she was going into all the sterile places, and it was there for all, you know, radiation and all the things. And so, that's on our bed all the time. But if we travel, we take it with us because if anything happened to our house, this bear needs to be with us, right? That it's not taken. But it is, like, people start to think it'slike security thing. "It kinda is," and I think that's okay that I find security and comfort in holding this bear that belonged to my child.

And, you know, talking that through and maybe normalizing it in a way that we don't want other parents to understand, right? Because the only way they're really gonna understand is if they lose their child, and we don't want that to happen. So, I don't expect them to understand on the same level, but at least we can give them some insight to how we're feeling and maybe it will relate to some other area in their life as well.

St. Jude Expert Jenn Allen:

Andy, Tasha, and Lisa so poignantly describe that longing to touch, hold...to feel and physically be with their child. There certainly is an emptiness, a void, that is left when you lose a child. These experiences are known as yearning, and it is one of the most common grief indicators. Grief is not a linear process, and the yearning does not go away; but what I hear Andy, Tasha, and Lisa saying is that these feelings morph over time, but especially early on in your grief, you are acutely aware of the void from the death of your child and you seek comfort and wish to be close to things or hold tightly on to what brings positive memories. In fact, one study in 2007 found that yearning peaked at 4 months post-loss; over the course of the 24 month long study, researchers found that yearning continues to be a dominant grief experience, but overtime feelings of yearning decrease and feelings of acceptance increase.

Tasha: I just had the realization that we're bereaved parents, but there may be some people listening who aren't, and maybe they didn't lose a child but they know someone who has. And I just wondered, you know, if either of you had anything that was helpful for you, some sort of support that your friends did, or how they reached out, or something along those lines that we might give them a little bit of insight?

Andy: Yeah. My friends just came out and asked me if I was okay with this situation or, "Are you gonna be okay?" So, that gave me some control to say, "Man, I can't handle that today," or, "Yeah, I'm good with it, but I might need to leave." So, it let them know that if I did leave, it wasn't a bad thing. It was just I needed that time. And I think that was bigger than they knew, helping me through that, was just giving me a little bit of control in that situation too, to do that.

Tasha: Like it wasn't a big secret thing that you're having to keep from anybody, it's just...

Andy: Right. If I ducked out, they were okay with it, and they didn't put the focus on me. Because I think when we're crying, or crying in public, or we're sitting there and staring off into the horizon, longing for them, that we don't want that focus on us. And they made that a safe space for me just by saying, "Hey, are you okay?" And I think that was really huge for me.

Tasha: Yeah.

St. Jude Expert Jenn Allen:

To wrap up - Our hope is that if you’re in the early stages of grief, or supporting someone who is – that you know you’re not alone. What you are feeling is real and valid, and though each person’s grief may look or feel differently, tears are one way that connect us. Certainly there are different levels of comfort with crying, particularly in public, but sometimes words cannot do justice to the deep, raw, painful emotions of grief. Crying is a healthy, cathartic release that is an appropriate emotional expression – whether tears of sadness and despair, or joy and love.

Finding a safe space to release your emotions, having supportive friends and family, discovering what works best for you to still feel connected to your child, and allowing yourself to feel however it is you’re feeling are beautiful nuggets of wisdom from Andy, Tasha, and Lisa. Thank you for opening your hearts and so eloquently sharing Penelope, Sydney, and Thomas with us.

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