Episode 5: Staying Connected - Friends & Strangers

Episode 5: Staying Connected - Friends & Strangers
Featuring Brenda Rydell, Lisa Trumbo, and Andy McCall
St. Jude Expert Traci Adams, LCSW

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.  One of the greatest challenges for me early in my grief was connecting with those that aren’t living in the bereaved parent world.  If I’m being honest, it still is even today.  Other bereaved parents get it – they allow you to talk about your child, they give space for your emotion, and they offer looks of understanding not awkwardness.  In today’s episode I will be speaking with two moms about their experiences.  Traci Adams, social worker for St. Jude, also offers thoughts based on her experience with bereaved families.  Let’s listen.

Lisa: Hi, I'm Lisa. And our middle son, Trevor, was diagnosed with a brain tumor right after he turned three years old in 2013. He was treated for the brain tumor and was doing really well after treatment. But just a few months later he relapsed. And at that point, his tumors had come back and it was very aggressive. So he only lived for a couple months more after the tumors came back. So he actually passed away in 2014, right after his fourth birthday.

Brenda: My name is Brenda, my son Brayden had AML and ALL. He was diagnosed in 1999. He had four bone marrow transplants. So he was eight when he was diagnosed and we lost him when he was 25 in July of 2016.

Andy: Now we have to prepare ourselves for other people.  Because you’re going to encounter all these people you might not want to, but I think to make it safe for you, you really have to thing about these things before you step out of the house. And friends are the big one. Some friends are there, but sadly some friends aren’t there. Lisa did you have any friends who stayed real close, or maybe they sorta left you and you wondered why? As we’re in this new grief process, you have to remember, they are too.

Lisa: We had actually just moved to this area when Trevor relapsed. So going through relapse and then him dying a couple months later, we didn't have a lot of friends here, but we stayed connected through text and phone calls. But what was really neat for us is that while Trevor was going through treatment a few months before he died, we'd made a couple of friends. And so it was really neat to have those people with me even though they weren't with us through the whole journey, but they were just there for the end. And those people are still our close friends.

Andy: I I felt like sometimes that my friends, they really wanted to talk, but they didn't know what to say. So they just stepped aside and I don't think they meant to and I don't think they wanted to be there for me. But then I was always asking, "Man, why hasn't he called? Or why hasn't he done anything?" But then you have others that show up out of nowhere. these friends, the texts and call would come in at the end and it's like, "Wow, they're really here for me."

Lisa: Yeah. But then we had the label of... when we did start to meet people, it was like, "Oh, I've heard of you, I know who you are." Okay, and it kind of being a little uncomfortable. That's what our label was.

Brenda: We had a lot of friends from the transplants, because you're in the same floor and walking the same hallways with your child every day. So those parents understand and they get it. It's the people outside. My very best friend in California before we moved back here, never mentioned Brayden, never, even when he was sick and going through treatment, she didn't ask. And one time I finally said, "Why don't you ask?" And she said, "I don't want to upset you. I don't want to remind you." I was like, "I'm never going to forget that my son has cancer. I'm never gonna forget that my son passed away, talk about him, say his name." And from then on it's been fine. We're still in contact. But it was a conversation that I just needed to let her know what I needed from her. She was doing it out of love, but it wasn't working.

Andy: It wasn't what you needed.

Brenda: It wasn't what I needed, no.

Andy: And I think that's big is we have to have those conversations. And as hard as it is for us to even think about it, it's hard for them too, She didn't know. And I think our friends and all of our family and those friends that come in at the end are the ones that have been there forever...

Brenda: Sometimes you expect, I don't know if that's the right word. You expect things from people that have been in your life that don't always step up and the people that you least expected are the ones that step in and step up.

Lisa: I hear that a lot.

Brenda: It, for all in Brayden, recurred three additional times. So, we had a couple of years of him being healthy and people would kind of step back, but maybe family members or close friends, disappoint is a strong word, but don't always step up. But total strangers. When Brayden was sick, we had neighbors that we'd never met mowing our yard and bringing food and you know that friends didn't do so it's... But I also had my very best friend here, who lost her daughter to a brain tumor before we lost Brayden. So long before our children were sick or anything we were friends and she taught me so much. She always said, "Say Hannah's name, just say her name, talk about her."

St. Jude Expert Traci Adams:

My name is Traci Adams, I'm a pediatric oncology social worker at St. Jude Children's Research Hospital.

When you are a bereaved parent, I'm sure you feel very alone, like the world doesn't know what it feels like. You're not alone. There are other bereaved parents out there who know exactly what you're feeling like but the rest of the world doesn't. And so, I think people don't say things sometimes or avoid bereaved parents for fear that they're going to hurt them in some way, hurt their feelings, say the wrong thing, or say something unintentional that will hurt them. And so, oftentimes, the bereaved parent has to be the one to say what is helpful, what's not helpful, what they need at the moment.

People are people. They're gonna try to say things that they think might make you feel better but it becomes hurtful such as, "I lost my grandmother last year, I know how you feel." Well, of course, they don't. Only a bereaved parent would know that.

And so as the bereaved parent, unfortunately, you're put in a position to do the leading of the conversation in a lot of ways because they don't want to hurt you. That's their intention is to not harm, not hurt, but if they say or do something, it may be hurtful. And so, you may have to say, "I know this is awkward,..."  but go into telling them what you need. "I need you to be just a friend right now." 

Andy: You know, Brenda, you mentioned strangers and strangers become friends and friends become strangers in this whole process. And I think definitely in today's world of social media and all that we share we really put ourselves out there because in a way it helps us heal. But then again it also invites a lot of people that they really think they know you but they really just know the story.

And I think, for the most part, a lot of these strangers when they meet you, they really want to connect with you and make you feel better because they know the story of what you've been through. They really don't know you and your grief process. And I know I had some of these strangers come up and they tried to comfort me, but I wasn't ready for that and I didn't know how to react. And I probably didn't react the right way to all of them. I made them even more of a stranger because they never wanted to talk to me again. But that's this process.

Lisa: I think when people try to connect with other people, they try to find a similarity. And so I feel like everybody or most people probably had some grief in their life. And so I think it's their natural, I don't know. It doesn't need to be, but people would compare their grief to mine. And it might be strangers. It might be somebody who knew our story on social media that was a message or private message of like, "I know it's so hard," maybe, for example, like they'd lost their grandfather and so they wanted to let me know that like, they knew how it felt and, or at least that's how it really felt is that they were trying to compare their grief.

And I just don't think that's fair in any situation. But you're right, I think you're probably going to encounter it. And so it's good to be ready for it. But it does, it hurts for someone to try to minimize what you're feeling. I mean, the loss of a child, to me it's been different than anything I've experienced and hopefully, I don't again…

Andy: Brenda, I know you said they came and did some things like mow the yard and I think the actions are great. I think the actions of doing those things they do help.

Brenda: The actions because the people want to help and what do you need? "Call me if you need anything." I didn't know what I needed. So to call and ask for help was just...first of all, I struggle with that anyways and I didn't know what I needed. So when people just stepped up and did something, it was so important to me because they did stuff that I didn't know I needed that was just perfect at that right moment. And then getting back to people saying things, We had the "My dog died 10 years ago." And over the years I've decided people say a lot of wrong things for the right reasons. They just want to make it okay. And we all know they can't make it okay. So...

Andy: That's just human nature.

Brenda: It is.

Brenda: You have to be prepared.

Andy: And you're not going to be prepared for everything because I don't know whose dog died when, but at least if I think about that, okay, I'm going to be okay when this happens. And...

Brenda: But does it make any of you guys go back and think, maybe have I said things...

Andy: Oh, definitely.

Brenda: ...prior to your child being sick or losing your child? I'm like, "Oh my gosh, I hope I never said anything like that."

Andy: Definitely. But there's the other side of that, we're like, "Oh, I wish that person wouldn't have said that." But then again, what would it be like if people just completely ignored you?

Lisa: You feel totally like a different person. I remember walking into my kids' school and looking around like, because I'd been immersed into the hospital and sick children and you just feel like a fish out of water. And you may have used that term before. But it was like I looked around and thought, "How are all these children healthy? This seems so weird." So for me to walk into a place that's a normal place for everybody else and for me to just feel like it feels strange to be in a place where nobody is sick. How is this happening? Kind of feel like an alien, for a while, that you were in a different world .

Brenda: And before your child gets sick, you don't know this world exists. Theoretically, you know it exists, but until you're in it, you don't realize how many children are sick. But then because that's your life, you don't realize how many children are well going about their lives and living their lives. And it's hard to connect the two worlds. It really is.

Andy: Yeah. So those friends become strangers and strangers become friends and that's just this life we live now.

Brenda: Yeah. And I think you have to open up to the fact that to accept people's help and grace because I think in the beginning I was closed off. I got this. No, I don't.

Andy: The ones that really stick out in the situations, I think, during this grief process were those innocent bystanders that they don't know you, they don't know your story. They're somewhere in public that you've been and they ask you a question that just catches you off guard. And I know I wasn't ready for that when somebody asked me, and I don't even remember what the question was, but totally against my normal character. I just went off on him. I let him have it. And as I'm doing that and I'm letting it go and I had all this pimped up, rage or sadness or whatever it is, came out in me as I'm taking that breath, I could just see it in their eyes. Like, they immediately regretted it and they had no idea. And that situation was awful for them. But then it was awful for me because I was not ready for anybody to ask those questions. What are those questions?

Lisa: Oh, gosh, I think the one that we all get, and I'm guilty of, this is just a question that you ask is like, “Do you have kids?” or “How many kids do you have?” I'd get it weekly from strangers. You're in an airport, you're anywhere. And that question I was not prepared for in the beginning, I mean, within the first week being somewhere. And I just sat there like, "What am I going to say?" And we have three children including Trevor. And so I said three and I felt okay about it and it didn't go any further. Because I do have three children. But then I noticed that sometimes those questions get a little further, what grade are they in or how old are they?

And sometimes I elaborate and say how old Trevor would be. Sometimes I say, and Trevor would be this age. Sometimes I just say he is this age. But I've also found that sometimes I still think about Trevor when I answer this question. It's not like, that I don't want to include him, but there are times that I'd still say I have two children. And the first time I did that, I felt awful. But then it's like you said, it kind of evolves, and now I can kind of pick and choose when I say what number, and I think it's okay. It's like you said, whatever you say in the moment I think is okay, but you have to be prepared for that answer.

Brenda: I remember the first time somebody asked me and I froze and then I'm like, "Three kids," and then I feel like had to elaborate. And then the more I elaborated, the more awkward it became. And I do exactly what you do now, some situations... And most of the time I just say three, a boy and two girls. And then if further questions go on, then, "Brayden would be 29," or...and I just read the circumstances. And sometimes people get awkward and then I feel bad that I've made them feel bad.

Lisa: And then you end up consoling them.

Brenda: Exactly.

Andy: Right. This is about them.

Brenda: I'm so sorry, I didn't mean to make that weird, and...

Lisa: I do, I say, "Oh, I'm sorry, I have to bring up Trevor." And they're like, "Oh, gosh, you know, I'm so sorry." I'm like, "No, it's okay. It's okay. I like talking about him. It's okay." And they're like, "Oh, man, I can't imagine" So you pick and choose when you open that can.

Andy: And I think you learn that too. As we've just had children after, like I tell people sometimes now I have 18-month-old twins, so two caged hyenas and an angel that watches over them. And some people are ready for that and some people aren't. And that's okay. Like, that's okay to tell them.

Lisa: One that really threw me off guard. And it wasn't a question, it was a comment is somebody who didn't know me said, "Oh, my gosh, just be lucky you have two, three is a whole another world." Like, you don't even know kind of deal. And I thought, "Oh, do I say anything? Like you don't know how bad I wish that three were with me right now." There's a lot of things that come your way that are unexpected.

Andy: And I think you just have to talk that with yourself. Or maybe that's you and your husband, wife, whoever. Maybe that's a conversation you have, but I think it's different for everybody. There are sometimes that I really want to talk about Penelope and there are some times that I just can't.

Brenda: I don't think there's a right or wrong, it's not a test. You don't get graded. It's whatever works for you at that particular moment.

St. Jude Expert Traci Adams:

This is Traci Adams, social worker at St. Jude. 

Once you become a parent, you identify as a parent, and then after the death of a child, you're still a parent, but then you're a bereaved parent, too.

So, you have a new normal after the death of a child and it's not normal to have a death of a child. That's not a normal thing, right? So to even say a new normal, it's not normal. It's a new abnormal almost.   

I think as you go along,...like, it kind of depends on who you're interacting with, how you answer the question. So if, for instance, you are gonna continue to see someone over and over again, then you may want to share with them exactly how many children you have, including the child who passed away, whereas if you're going to just meet somebody in the grocery store, you don't have to tell them what you don't feel you're up to at the moment.

Talk to your spouse about, how are we going to answer this question when people ask so that we're all prepared? Even with siblings, you know, have a conversation, how are we going to answer this question? And then maybe as a family, you can come up with some kind of answer that you all know how to answer, and whoever feels they can answer the question in the moment, they answer the question.

What you are doing is trying to remember your child, remember their legacy. And if you had some simple answers of what to do when you're caught off-guard,…come up with some phrase that you started off with, like, "Oh, gosh, I wasn't prepared for that today," or just be honest and maybe even not even answer the question. There's nothing that says that you have to answer a question if you don't feel up to it.

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.