Episode 3: What Am I Looking for?

Episode 3: What Am I Looking For? - Finding What You Need
Featuring Christine O'Brien and Andy McCall
St. Jude Expert Brittany Barnett

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.  Sadly, 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 after Penelope’s death I learned that there are many manuals and guide books for bereaved parents written about grief and grieving, but there is not a one size fits all that will work for everyone.  As a bereaved dad, I knew I needed help, but I was not sure where to look.  I knew I was not alone.  In today’s episode, I am talking with a mom about how we each struggled to find the help we needed, what we each found that was helpful and what we have learned so far.   Additionally, you will hear Brittany Barnett, manager of Patient & Family-Centered Care at St. Jude, tell how important it is to offer support to bereaved families in multiple ways.  Let’s listen.

Andy: Hey everyone, this is Andy, Penelope's dad. Today's episode, we're really gonna talk about being together and being in this together because you can't do this alone. For some people, it's easy to ask for help. For some people, it's not easy to ask for help. And today with me is a very special mom and one of my really good friends, and a fellow bereaved parent, Christine.

Christine: Hello, Andy. Thanks for having me. I am Catie's mom. Catie is our middle child of seven, and she also had a brain tumor. She was seven years old when she was diagnosed. She had eight months from her first symptom to the day she died. And when I went home, I needed help.

Andy: I think we all do. You know, in the early stages of grief in this grief journey, you know, you feel alone. And you had a house full of kids. I just had, you know, my wife. And we sat there and we know we needed some type of help, but I didn't even know where to begin, sometimes. So that's hard.

Christine: I kept sorting what was happening with, "Does this belong in Cate's basket?" I kept asking the kids, "Nope, that doesn't belong in Cate's basket." I kept thinking to myself, "How I'm feeling today, yeah, that belongs in Cate's basket."

Andy: You know, I hope today, you know, we're gonna talk about those who, what, where, when, hows of support. And I think the best is to start with who, you know. I think it definitely bears repeating, sometimes you gotta do a little extra work and you've really gotta figure out who's gonna help you and who isn't. And that's a hard decision. You know, what do we need to ask? What do we need to start with?

Christine: I felt so vulnerable having lost Cate. I left everybody and brought her to St. Jude, and I had to go re-enter their world, and I failed because she died. That was my one job. And so, I felt so vulnerable. Anything that came to me, even a thought, I was like, "I don't even know if I can do this." I almost wanted to just freeze, stop the world from going on, stop my thoughts and yet, I couldn't. So, finding the who, for me, was really important because I felt so vulnerable. I needed someone really safe.

Andy: You know, I agree. The safe is huge. And I think that's been a common theme throughout talking to different parents in my grief journey is I wanted to do this alone because yeah, this was me, this was my story, this was my daughter. But I realized real quick because I was going down a very deep, dark path and, you know, I started writing, and I wrote Pigtails and Steel, my book, in my thoughts, but I was still alone in that. That was still just me in my head. So, finding those people... You know, I've searched friends, I've searched family members, and some worked, some didn't. And I think for everybody, it's gonna be different. But you really have to sit down and say, "Who's gonna help me through this?"

Christine: And some of what I found, some of the who's that helped me didn't actually help me through interacting with me, which I thought was even better. I don't even know who to this day did this. Someone put a book in my mailbox, a book called "Longing for My Child," and short one-paragraph stories of how parents have lost children. And I would read them and I'd be like, "Oh, thank God that didn't happen. Oh, thank God that didn't happen." But it gave me a perspective that I actually started feeling grateful. Another person, and, again, I don't know who this person is, would leave soup on the front door. And I hadn't even thought about eating. So, they were meeting needs that I had that I didn't have to ask for. They weren't invading my privacy... But they somehow gave me the strength to start looking for what I needed.

Andy: And that what I think is we don't know what we need. We think we do. I need to go do this or I need to go out and get back to some kind of routine, but we need that support internally. And I know that comes from a lot of different places, but the what and what do I need, where do you start with that or where did you start with that?

Christine: Well, to be honest, I couldn't go back in the world until I could trust myself, trust myself to not lose it. I remember one day just going through, there's so many things, you get in the car and you turn left when you pull out of your driveway, and you don't even know where you're going, but you've done it so many times, going to work or going to the grocery store or whatever. That so many things are automatic. You're not even thinking about them. And I, like, realized, "I should not be driving a car. I am not in the mindset to be driving a car. I am dangerous to myself and others," and just turned around and went back home. And that's when I was like, "What do I need? I need something that I can find at home to help me sort out all of this." And so, I turned to my laptop. It did not go well for the first laptop.

Andy: What happened to the laptop?

Christine: So, Google searches weren't as robust then as they are now. And I typed into the search bar, "My child has died, what do I do now?" Now, today, I can hear Siri saying, "I'm sorry, I do not understand," but at the time, nothing found. And I was, like, so frustrated. So, I kept typing and typing, and typing, and I just kept getting more and more, and more frustrated, and so I just slammed the laptop shut and destroyed it. I didn't even know it was that fragile. But I guess it was a sign that I was that fragile.

Andy: Well, I know that that's hard. As I was trying to find something, you open up Google and you sit there, what do I even type? Because you feel crazy.

Christine: Exactly.

Andy: Like, do I type, yeah, "My kid died," or... You can't even make yourself type that. Like I can see myself sitting at that computer or even sitting on my phone, like, "How do I even do this and what is out there?" Because I think that's the biggest thing is, you know, we know we need somebody, we know we need something. And like you said, for you, the when, you know, I knew I needed it after I was going down that dark road. Like, I could see myself going, "This isn't good for me." And some people, I think that might take a little longer or some people might need it that next day. So, you know, where do we look? Like, where do we start or where are these parents in this new grief journey? They're asking the same... We're all asking the same question. Where do we even start?

Christine: Yeah. My when was the first Monday after the funeral and after everyone had gone home, and my husband went back to work, and half the kids went back to school. And when was then. It was right when. And what do you search? It's interesting. You search loss, you're gonna find a million articles about weight loss. Could have cared less. Didn't even think about eating unless someone brought me soup. You're gonna find a lot of articles about pet loss. And so, then I started becoming concerned if other bereaved parents don't know what words to search, they're gonna be giving themselves undue additional pain just because they're looking for help.

Andy: I think that's where a lot of people stop. It's so overwhelming. Like you said, I'm looking for some help with my child loss and I've gotta scroll through pet loss, weight loss, all of these things that don't matter to me. You know? And I think that's the good and bad of the internet.

Christine: Exactly. I mean, I feel for everyone who's lost a pet. I'm sorry. I know that you love that pet and that there's a hole in your life. And I feel for everyone who wants to lose weight, lose weight, excuse me. But at the same time, my child has died, my heart is broken. I'm lost and vulnerable, and fragile, and I don't have the energy so what do I look? So I started typing, "What do you call a mom whose child has died?" And through every culture that I could search, there is no word because it is literally an inconceivable notion. There is one language which I don't speak and it's almost, the word for life is backwards because it's out...or out of order.

Andy: Or life turns backwards. I mean, we feel like it. Like, it stops, turns backwards, sideways, everything else for that time. You know, that's our reality though is there's not a word in our society, people don't wanna talk about it. So there, we even feel more alone.

Brittany Barnett, St. Jude Expert:

My name is Brittany Barnett, and I am the manager of Patient & Family Centered Care at St. Jude. My role is to help families after the loss of a child, by connecting them with other bereaved parents as well as help them find resources. As you listen to Andy and Christine and talking about their search and their desire to find something but not knowing what that is, it just rings so true the importance of having another parent there to walk alongside them and just say, "I have been exactly where you are. Not in the same situation necessarily, but I've been in that same grief. And I'm on the other side. And I'm still breathing. I'm still standing. And I can be here and listen to you."

A lot of what our mentees want and need is just validation of what they're feeling and, you know, validation of the anger or the second-guessing or the sleepless nights. They need somebody to say, "I did that too," or, "I still do that," or, you know, "It will never go away but it will change. And you'll feel like you can grieve a little easier."

People even though they mean the best don't say the best things. And certain times, especially if they've not been through what these families are going through. And so, to be able to even just talk about how someone said something that hurt their feelings and, you know, "Did you ever have a friend do that?" or, "Did you ever have anybody pull away from you?" or, "How did you handle this?"

Listening to Andy and to Christine and to other parents, you know, not everybody wants to talk about this. Some people want to read about it or journal about it or write about it like even Christine said. But there are times when you really do just want someone to say, "It's okay. It's okay to be mad at your doctor," even though you know that they did everything right. It's okay to feel completely, you know, illogical and know that what you're feeling is illogical. But that doesn't take away from what you're feeling or the pain that you're having.

Christine: Someone had sent me a book when we were at St. Jude and said, "This is a great book to read." This mother had a child who had cancer. And I read the book and I finished reading the book, and I threw it across the room because the child died, and my child was still in her battle. And I was like, "How could you send that book to me?" And the parents got divorced and I was, like, so mad. That wasn't going to be my reality. And so, that thinking that there are books and there are stories of other parents that had cancer, I went and started searching for them. Because I knew that book and reading that, even though I didn't wanna read it, I didn't want their story to end the way it did, that helped me or prepared me. It was the warning shot for watching Catie's physical body deteriorate and change as she was dying. But then where do I go from there? Now, she has died, the book didn't give me any of that. Could I find another book that would give me the next piece? And I wish I could say, "This one book did," but there wasn't one book. There were sentences, and paragraphs, and chapters in many books.

Andy: So, you're saying we have to search out a lot.

Christine: It's not a one size fits all.

Andy: And I think we can't stop after that first book because if that first book doesn't help, a lot of times we wanna shut down. "Well, this isn't good for me or this ain't gonna be good." But we have to keep looking. And whether it's a book or, you know, an online article, sometimes whether it's good, bad, or otherwise for our healing, it plays a part in it. Because I know now that's not where I need to go with my bereaved journey. I need to seek something else out. And I think that's big for us, just reading or listening, you know, as I hope this podcast is gonna help people hear that tidbit that's gonna help them through the day or maybe that hour, or maybe that minute, or situation because it's setting ourself up to go to these people. So now, we've found some resources here and there, but then, again, we're still alone with these resources.

Christine: Well, so you mentioned articles. Many people said to me, "Well, I can't read a whole book. And I could, and I did for a couple of reasons, I had this house full of children and they didn't wanna see me sitting around, sitting around crying. But if I was reading a book, they could justify, "Oh, the book is sad." So, I was able to express how I was feeling without them feeling, "Oh, it's all about..." They didn't wanna put it in the Catie's basket. So...

Andy: Oh, "Mom's just reading a sad book."

Christine: "She's so crazy. Why would you read a sad book?" I'm like, "Well, quite frankly, there aren't that many funny books," but that's not true. But at the time, I wouldn't have enjoyed those as much. I found so many books and so many articles, and even children's books. Children's books are much more honest about the emotion that's in them, that I created a database because there was just... I couldn't keep track of it all. Even the books where I only found a paragraph, I created a file just with all these great quotes or... Because I needed somehow to, like, track if you will all the things that had helped lead me to where I was. And then someone suggested to me, "What about podcasts? I listen to podcasts." And I was like, "Great. Now I gotta start listening to podcasts." And interesting enough, and you're a guy so I can ask you this, I heard a father say, "I can read, I can't deal with other people. I can't deal with their pain or their loss. But listening to a podcast because I'm not interacting, it's more beneficial to me because I'm not vulnerable."

Andy: I definitely resonate with that. And I think men, in general too, we're not great with our feelings and sharing. You know, I've learned through my process that I need to be and that's how I heal. And that's why I didn't seek out support groups at first or maybe the people at church or maybe the people at family that were there to support me or, you know... And that just wasn't me.

Christine: And there were many different... Like, there were many resources that came to me through our insurance company. They called and said counseling is covered. People sent, "This is a childhood bereavement camp or this is a childhood..." And I gathered the kids around and asked them, and said, "What do you think about this?" And they said, "Don't leave us. You've already left us." And I was like, "That's bad." But there are places you can look. You can look at your funeral home. You can look at your church for resources. There are some that they'll just send you an email every day for a year. But if you're needing to connect with others, I would say step gently because I did go to one group one day and listened to a mom. I mean, my innocent, sweet seven-year-old daughter had cancer. She didn't choose that, I didn't choose that. She didn't do anything wrong. She didn't live on this earth long enough to develop bad habits. She didn't even know how to swim. And I went to this grief group and there was a mom telling me that her child was killed in Iraq. And I'm like, "I'm so sorry." And she's like, "She was blown up." And I'm like... "And she was 28 years old." It felt so different to me.

Andy: That's not the life I live. That's not what I'm in right now.

Christine: Right. And your grief, this mother's grief was so overwhelming. I wanted to comfort her. And I think that's part of the process of support groups but I came because I needed, and I didn't know who could comfort me.

Andy: You needed more than you could give at that moment. But I think some people need to seek out those support groups or try it. You know, I think that's the big thing is like we said with these books, maybe you need to try a support group or a bereaved parent that you...

Christine: You have to try.

Andy: But you have to try

Christine: And then when it doesn't work and that one didn't work for me, I didn't go back, but at least I tried. And I found that I had more meaning and more help in the search. I think the search gave me meaning and helped with my healing, just searching for what would work, what was out there, and realizing that man, oh man, there's not a lot out there. Our culture is definitely death phobic.

Andy: Yes, I think we've worked out sort of how to go about this a little bit. So where can they go? Where can we start? You feel like, "Okay. I'm ready for this. I've got my who, my when, I'm ready for it," where's a good place to go?

Christine: St. Jude has a bereavement webpage, that's a great place to go.

Andy: I mean, do we just search our normal stuff? I mean, you know, for me, I'm sitting there going, "Okay. I'm at the St. Jude website, what do I go to?"

Christine: Frequently asked questions. Things that you're experiencing, read through it. It's kind of set up as a navigation tool to say what you're feeling and what you're experiencing. You're not alone in it, other people have experienced it. It was created by St. Jude parents who'd lost children saying these are the things they've experienced. They worked with members of the psychosocial team to develop all the content that's on there. So, it's there. And if that doesn't do it for you, what comforted you before? Because it still may. If watching movies with a bowl of popcorn comforted you, find a movie. Maybe you don't wanna watch a movie about someone who's died, which I totally get, but maybe you do. Maybe you still wanna put your toe in the pool of cancer and maybe that gives you comfort. So, there are movies out there. There are a lot of people that don't wanna touch those stories so find another movie. If movies are what comforts you, watch them. If writing comforts you like it did for you or helps you, write, write online, get a pen and a great journal, and write.

Andy: I think that was big. You know, I'd search for those books and I didn't find one that really fit me. So, I wrote one.

Christine: Exactly.

Andy: You know, and I think going on St. Jude's website, there's contacts there too. So, if you don't find it, on the website there are people you can contact. And at least, they might not have all the answers, but they can start steering you to those answers. And I think that's what's great about what we're doing here and is getting those resources to whoever might need it when they might need it.

Christine: One of the things that I started to notice is once I started compiling all this, I felt less vulnerable. I was giving myself, I was finding tools I needed that helped me heal and I felt less vulnerable so I was able to...next time I met a mother whose child had died, whether they had died of cancer or something else, I was able to give to them. And you'll find this network of people or they'll find you, and you just have to decide, am I gonna be open and accept this or right now, it's not the time, but I'll hold your numbers?

Andy: And that's important not to stop after that first one because like you said, you might've read something somewhere that's gonna fit that mom or that dad or that child that you come across that's experiencing this new grief journey and you can help them, and in turn, that's gonna help you.

Christine: Exactly. Because once you start focusing inward, which is good for a while, put that oxygen mask on first, but then eventually, you'll gain the strength that you can then turn it outwards and help others if that works for you. And that totally works for me. Let me make something good come of this tragedy.

Andy: You know, and I think that's what we've done today is lay that groundwork for somebody because grief is hard.

Christine: It is.

Andy: It's hard work. And if you don't keep up that work or keep trying to evolve through this, you're gonna get stuck in those places. ­­­­And you're gonna find that network and you're gonna find that book or that sentence that gets you through that day. But I know you feel the same, you have to do something. You have to find that help and wherever that comes from, because you're not gonna heal if you don't. And then you're not gonna honor Catie or Penelope or your child by sitting there alone. It's just not gonna happen. And your world broke, but you don't have to stay broken.

Christine: There is a great story that I found a couple of years after my daughter, my sweet Catie died, and it's called "After the Fall." And it is the story of after Humpty Dumpty fell, him being put back together and his willingness to climb back up on the wall. It's a great book. You should check it out.

Andy: I don't think we ever thought about that.

Christine: I know. Talk about resilience.

Andy: Yeah. Who thinks about after?

Christine: But we are living after, so why not?

Brittany Barnett, St. Jude Expert:

Another piece that I would suggest in terms of families who don't want to talk, maybe they're not ready. Maybe that's not their mode of coping, is to find the resources that have already been discovered by grieving parents. I hear a lot from our parents that when they went through this and when their child died, there wasn't a lot. And now, there are. There are more options. Is there a lot of options? Not really but is there more than there were several years ago? Yes. I always would like to refer people to our Together website. It is a website that is put on by St. Jude but it is not St. Jude-specific. So, there are ways to communicate with other families. There are ways to find resources that really can help other families during this time get the resources that they might need. And that could just be reading, maybe doing some online chatting. Maybe that feels less invasive. And they can type out their thoughts and things like that to other parents and not so much one-on-one. And then, as Christine has mentioned, as well, our St. Jude website was really put together by our St. Jude parents.

Our parents have done an enormous job of finding many resources, reading many, many books, listening to several podcasts to find out which ones really speak to them, which ones aren't as appropriate to really give those parents who are new and raw in their grief somewhere to begin. Because a lot of times, it's gonna takes a lot of different ways to try and figure out what it is that works. As Christine said, you know, she broke her computer the first time because it frustrated her. And she couldn't find what she needed. And Andy describes going into a dark place and trying to search for these people and finding that writing was this place.

And so, it may take lots of different avenues for humans to find. But we, hopefully, have provided lots of opportunities for them to try some different things, see what works best for them, and seek out that mode of coping.

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.