Episode 7: When Is It Time?

Episode 7: When Is It Time?
Featuring Andy McCall, Tammy Payne, Kelvin Payne
St. Jude expert Erica Kaye, MD

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 after Penelope died, even though my world stopped the world didn’t.   I had to go back to work to pay the bills – I wasn’t ready, but it wasn’t an option for me to stay home and not work.  So many factors play into when you go back out in the world after your child dies and it is different for everyone, including moms and dads, husbands and wives.  In today’s episode I will be speaking with a couple about how they managed returning to things like work, running errands, and going back to church.  You will also here from Dr. Erica Kaye as she offers her insights. Let’s listen.

Andy: Today, we're gonna talk about life. And sadly, when our child dies, the outside world just doesn't stop even though ours did. Work has to get done, bills have to get paid, and for the most of us, just getting out of the house for the first time and trying to even think about these things that we've been putting off is a huge step. So when is the right time? Or, like I know a lot of us think, is there ever gonna be a right time? But let's talk about Kelvin and Tammy. Kelvin, introduce Tammy for us.

Kelvin: My wife is Tammy Payne. She's a very beautiful young lady, very intelligent. She doesn't like me to say that much but she's very, very intelligent. We’ve been married 26 years and I couldn't see my life without her. She's my everything.

Andy: Tammy, tell us about Kelvin.

Tammy: Kelvin Payne, my husband, my protector, provider, great dad, great granddad. The thing that I love about Kelvin is his timeliness. If he says he's gonna be somewhere at that time, he is there, and he's always there. He just recently retired from the Memphis Police Department after 26 years, I'm so proud of him, so excited for him to enjoy the rest of his life and whatever he wants to do.

Andy: Congratulations, Kelvin.

Kelvin: Thank you.

Andy: I've talked about Penelope in other episodes, but Tammy, tell us about Keenan.

Tammy: Keenan was six years old when he was in the hospital, diagnosed with sickle beta thalassemia. It is a sickle cell disease, a form of sickle cell disease, that causes red blood cells to become sickle-shaped and create crises. Keenan, after he was diagnosed, we started making regular visits to St. Jude, and from the age of 6 to 18, he was a patient of St. Jude, and at the age of 19, he was hospitalized again, and this time, his battle with the crisis was not won. So he passed away at the age of 19.

Keenan was this gentle giant. He was quiet like his mom, but we had this special bond. And the last memory that I have with Keenan, and this just tells who he is, he had a board in his room, a whiteboard, and he had, it was a calendar of dates, and it was Valentine's Day. He passed away in March 2016. So, right before, in February, he had this board, and he had Valentine's Day circled, and I put on his board, "I love my mom." And he just started smiling. He didn't say anything. He just started smiling, because nothing on his board said anything about his mom but we just had this very special type of relationship, and I knew that he loved me and he knew that I loved him and I wanted the best for him, and he made us proud.

We were together for so long, I mean, because after he was diagnosed at six, I think that's when we, as a tag team, Kelvin and I, started to just really monitoring him and making sure that he was healthy and that he was safe. And so, that's the type of person Keenan is. He wouldn't tell us when he was sick but I could look at him and tell sometimes. But, you know, sometimes I probably couldn't. But he was just that type of loving son that didn't wanna cause any problems or chaos, and he never gave us any major problems, thank God, during his lifetime. And he had a really close knit of friends that, to this day, still call me and come by and talk to me, and that's something that they don't have to do. So that just lets you know how much he was loved by his friends and how much they loved Keenan and his family.

Andy: And Kelvin, tell us about Keenan, your son, not Keenan, the patient, or Keenan with sickle cell beta thalassemia. Tell us about your son.

Kelvin: Keenan, he was my everything. That was my buddy, my partner, my friend, my son. He was a very quiet, you know, he was a very quiet person. He would look around, he would study people rather than just speak his mind on them. He would just look at them and study them. But he was a gentleman. I remember once I wasn't feeling well, and we had to go to the store, and he's always seen me open the door for his mom all the time, all my life. So one day, I took him to the store and I couldn't get out of the truck. So, it was a lady walking behind, and he was probably eight or nine years old, and he actually walked to the door and saw that lady coming behind him, and he stopped. And he opened the door for her and he let her go in first. And I said, "That's my boy."

So, he was a gentleman. He was a small frame guy, but he carried a lot of weight. You know, all the guys, all of his friends, they loved him. He was, like, maybe 105 pounds soaking wet and all of his buddies were, like, 6'5", 200-and-some pounds, but he ran the whole thing. You know, it was like they looked up to Keenan, even though they had to look down at him, you know, they looked up to him. And they called him "the grandfather." But he was a smart young man, and I really, really miss him.

Andy: I can hear the love in your voice. Sickle cell beta thalassemia, that didn't define Keenan. Those things you just said defined Keenan, and that's why we're here and sharing the story. We have to go back to this world, and as a husband and wife, and I know as Ellen and I were sitting there, you sit there at home after all this happens, and you're like, "What now? We've gotta go back to this real world." Now we gotta handle it as a couple. And, you know, I know for us, it was a lot about communication. Kelvin, was there anything that happened or did anybody say anything to you that really got your mindset about, "I've gotta go back to this real world?"

Kelvin: Well, actually, yes, my uncle. My uncle and I spoke for a while because he, years before Keenan passed away, he lost a daughter. And I remember him telling me, you know, to not rush anything, you know, just take your time, take all the time you need, life is gonna be there. And he said, "Whatever you do, make sure you're there for Tammy," my wife, he said, "Make sure you be there for her. She's gonna need you and I've been here, and I'm still here." So when he told me to take my time and, you know, take it easy, that stuck with me. I heard a lot of people telling me a lot of things, but for some reason, that stuck with me. He said, "Just take your time," and that's what I did.

Andy: I think that right there is what we all need to hear, take the time, all the time you need. Now, Tammy, What was it like for you?

Tammy: For me, it was like I was in an out-of-body experience. It was, I didn't know how to feel, what to do, what to say. I didn't wanna go out to, you know, out in the world. It was just, I wanted to remain at home, remain in my comfort zone. And so, for me, I don't think anything really stuck out for me that caused me to say what I would do or how I would feel. I was just in the moment, every moment of the day.

I think we definitely grieve differently, like, very opposite, because I wanted to talk about Keenan all the time, and Kelvin, he did not...I mean, at night, we wouldn't talk about Keenan, because it would cause him to not be able to sleep. And so I respected that, and we kind of, you know, because we had been together for so long, I knew what I needed to do to make him comfortable and he also knew what he needed to do to make me comfortable. So I think we kind of worked that magic together, and just started to, you know, not be selfish and just make sure that we were connected to one another and also respectful of our grief pattern, and it was totally different.

Kelvin: Yeah.

Andy: And I think that's the big thing, is we have to realize that, you know, whether it's, man, woman, husband, wife, whatever the situation is, you know, realizing that and taking control of that, like you just said, you gave him his space, you needed yours, and, you know, there's things like the funeral, the plans, we all handle those things differently. But being able to get through that together, that's the good stuff right there, is being able to come back and say, "Hey, we made it through this together.” So, we're done with the funeral. Life doesn't stop even though our world was shattered. And Tammy you said you wanted to stay home, and I think Kelvin, it was a little bit different, but Tammy, so was it hard for you to go out right afterwards?

Tammy: Oh, it was definitely difficult for me to go outside, to go out to the store, because I didn't want to interact with people, and especially people that I knew. And I understood that if I went out, I would definitely see someone that I know, and I didn't want it to be awkward. I didn't want anyone to feel that they needed to say something or wanted to feel sorry for me. So I just wanted to avoid that altogether. And then also, I just wanted to be at home, because at home is where I felt closer to Keenan. And we were talking about me making plans for the funeral. I just wanna call out that when Keenan passed, that was the first time that I saw my husband cry. I had never seen him cry, shed a tear before, in all of our marriage life.

So to see that, that affected me tremendously because this was the breakdown. And as strong as he was, I knew that he was hurting and I was too, but I had to step up and make those plans, and he was there. Anything that I needed or asked, he was there, he answered, but I wanted him to take that time because I knew that he was really struggling at that moment. And so, after the funeral, I think that's when he stepped in and took care of me, because he was like, "You gotta get out of this house. I mean, you can't stay here forever." He's like, "Back to reality, Tammy. Come on, you gotta take a step."

And so he forced me to get out. He's like, "Come on, let's go." Even if we just went to the store, and this is what I really appreciate, is because we went to the grocery store together and we came into contact with someone we knew. We both were band parents, because Keenan was in the band. So we knew all of the parents, all of the kids, and some of the kids even worked at Kroger, which is our local grocery store. So I knew that we would run into someone that we knew. And we did that. I wasn't alone. And so, he kind of stepped in and interjected because people do want to show their sympathy for you but just don't know what to say. And so, he kind of guided some of that conversation and steered me away from that, which I was really grateful for, and it made me feel more comfortable.

Andy: Kelvin, I wanted to ask you about this. I remember that too. I remember that first cry that I had and I was like, "I don't even know how to handle this."

Kelvin: Well, I'll put to you this way. As Tammy said earlier, you know, when Keenan passed away, that was the first time I had ever shedded a tear since I was, like, probably in the third grade. So when it first hit me, I didn't even think that I knew how to cry. I didn't think that I knew how to grieve, but I had never gone through anything like that before. I mean, I've lost cousins and uncles and everything, but to lose someone that close to you, you know, you can't mentally prepare for it. So when I first broke down and started crying, it actually made me feel good to let it out, you know, because normally, I'm the one that's talking to people and calming people down and rubbing on their shoulders and telling them it's gonna be all right, and now, I gotta have people telling me that it's gonna be okay.

But when Tammy was saying that, like, she stayed in the house, it was totally opposite with me. I felt better getting out and talking to people, because I am a people person, and I knew that people were gonna come up to me and start talking. So it made me feel better to talk about his passing, because everybody that I saw, they knew that when Keenan was alive, if they saw me, they saw him because we were always together. You know, so if they saw me and he wasn't with me, especially a lot of the guys that I knew, you know, where's your partner? And I had to tell them that he passed away. But the more I told the story about how he passed away, the better I started to feel. So it made me feel better the more that I talked about it.

You know, so a lot of people, they'll clam up and they won't talk to people, they won't discuss anything, but I found that it helped me to talk. So I figured that if I didn't talk, I would probably clam up and end up laying on somebody's couch talking to some psychiatrist or psychologist, and I didn't wanna do that. So the more I talked about it, the more it helped, and I talked to family, friends, strangers. I would see people...I remember, once I was in Chick-fil-A and I saw this lady, and I don't know if it was her daughter or what, but it was a lady, a young girl and a little boy, like he was maybe five or six, and she was trying to show him how to use the albuterol inhaler. And I flashed back to when Keenan was, like, seven or eight and I was trying to teach him how to use it.

So that lady was not familiar with asthma and I was. So, of course, I stepped in. I said, "Ma'am, do you mind if I help you with that?" And I showed her how to use it and of course, I broke down. After I finished showing them how to use the inhaler, I went back over to my little corner and I just lost it. I just lost it. So, you know, like you said earlier, people take their grief differently, and mine, the way I handled mine was talking to people because I'm not one to be quiet. So if I was quiet, people always ask, "What's wrong? What's the matter? Why are you so quiet?" So I just remained myself. So as long as nobody came up to me and said, you know, something like, "Hey, I understand what you're going through," nobody said that, thank God.

So if someone wants to say that to me, I would hope and pray that they've actually gone through what I've gone through to understand it. Because a lot of people, they'll say that, they'll be like, you know, "Hey, I know how it feels." No, you don't. If you've never lost a child, you have no idea what it feels like. I understand losing a brother or a sister, a mother, father, I've never lost those people, but losing a child is something that I wouldn't wish on my worst enemy, ever.

Andy: I think that's powerful because we all, as a bereaved parent, no matter what state, you have those same thoughts. To work through it, it's all about that love and respect for each other and letting each other grieve in their own way and finding what works for you. Tammy and Kelvin, your way was completely different, my ways were...some days, I was like you, Kelvin, somedays, Tammy, I wanted to be like you, and Ellen was the same way. And, you know, even with the things that we did, like, I still carry Penelope's bunny around. That's my way of dealing with it. And I know we have things like watching videos and looking at pictures and that was very hard for me, but Ellen did that, and that was her way of grieving, and I had to learn that that's how we did it. And Tammy, do you still watch videos of Keenan or did that...

Tammy: Absolutely. So, that is where we also differ, because Kelvin hasn't watched a video of Keenan since his passing. But I love to watch videos, look at pictures. I have videos on my phone, one of his birthday celebrations. His last birthday celebration we had, I had a video, and I watch it periodically. And Kelvin, it's so weird because he videoed Keenan from birth to the day he passed. I mean, we have all of these videos, Christmas videos, birthdays, and it's just so many memories, and I love to watch those. So I do that when he was at work. Now, I don't know when I'll get to do it because he's no longer working, but our schedules were different. So when I came home, he was at work, and so I would get to watch those videos. It was being respectful of him to not have them on when he came home.

Kelvin: And she could do it, but I just couldn't do it. I tried it once, I think I put...he passed away in March, and the last video that I have of him was December, that Christmas. So I tried to watch that, and when I put it in and I saw him walk across the floor, that was it. I think I watched maybe 30 seconds and I stopped it. So I still can't do it. And I can talk about him, I can look at pictures, and I'm okay, but I just can't listen to him talk. And I don't know, but maybe in time, I will, but right now, I just can't.

Andy: And I think that's the biggest part is like you just said, in time, I might, and in time, I might not. And that's how this grief journey goes.

Erica Kaye, MD, St. Jude Expert:

My name is Erica Kaye, and I am a pediatric hematology-oncology physician, as well as a hospice and palliative medicine physician at St. Jude Children's Research Hospital. I also serve as the director of the research division for Quality of Life and Palliative Care at St. Jude. And it's my pleasure to be a part of this conversation today.

Tammy and Kelvin talk about the disease that Keenan had, which is called sickle beta thalassemia. And that is a type of sickle cell disease where the red blood cells just don't work in the way that they are supposed to. Sickle beta thalassemia can affect patients in lots of different ways, and it can be hard for patients and families and even doctors to know which children will have serious symptoms.

And I think it's really important to raise awareness about sickle cell disease. Lots of folks know about cancer, but not as many are familiar with sickle cell disease, which can be very serious and really impact the lives of patients and families. Sickle cell disease currently affects about 100,000 people in the United States alone, and it occurs in about 1 in every 365 births of African-American babies.

And sickle cell disease can have a lot of different types of symptoms. One of the symptoms that Tammy mentioned is a crisis, and that refers to severe episodes of pain. I'm can also involve difficulty with breathing and other serious problems. And even with the best supportive treatments, sickle cell disease sometimes causes death.   And I'm so sorry to hear that this is what happens to Keenan and his family.

I was deeply moved to hear about how Tammy and Kelvin supported one another in their grief. They both inwardly experienced and outwardly manifested grief in really different ways. Yet they had tremendous respect for and trust in one another, and I think this allowed them to give each other space and permission to grieve in whatever way felt most meaningful and helpful to each of them.

 In my role, both as a clinician and a researcher, I've had the privilege of knowing and speaking with bereaved parents over the years. And many have taught me that they are always learning what works for them and what doesn't work. And, in doing so, often become teachers for those around them.

I think, in my professional and personal experiences, it holds true that every grieving person is different, and there's not always a one size fits all approach. There's a good amount of trial and error necessary for figuring out what feels right for each individual. And in many cases, it can be empowering for bereaved parents to figure out what boundaries they need within a given situation and ask for those boundaries to be respected. I really admire Tammy and Kelvin for figuring out what would feel helpful to them as individuals, and then asking their friends and family and colleagues to partner with them to create a safe space for their grief.

Often people may worry about stating their preferences or boundaries, because they don't want to feel like a bother or to create drama. But, in my experience, colleagues and friends really want to partner with bereaved parents and respect their boundaries. Sometimes they just don't know how. And everyone grieves differently so it can feel tricky to navigate.

So when a bereaved parent tells the people in their lives what they need, folks are grateful to have guidance on how best to support them. And I think Tammy and Kelvin offer a really remarkable and inspiring example of this.

Andy: We've tried to figure out this new normal in life and, you know, work is different for everyone. For me, being a teacher and a football coach, it wasn't like I could just bring everything home. I had to get my mind right to be the best that I could for those that were counting on me. And man, that was hard. And I know Kelvin, being a police officer, you know, you gotta have your mind right for these things.

And for me, it was learning to compartmentalize those thoughts and feelings so I could actually just go get my job done and do it the best I could. Kelvin, you know, as a man and a father and especially a police officer, was that hard for you to just say, "Okay, I've gotta go back to work because it's best for me," but still have Tammy at home? Was that hard for you?

Kelvin: I figured eventually, I would have to go back and face it, but when I went back, what made me feel comfortable about going back, nobody came to me rubbing on my back and saying, "Hey, man, I'm sorry you're going through what you're going through," or, "Hey, I'm sorry you lost your son." Nobody did that. So when I went back to work, it was just like I was off on Monday and went back on Tuesday and it was like, "Hey, man, let's get out here and write these tickets. Let's go ahead and do this job," you know. So, nobody talked about my son, nobody asked about how I was feeling at home, you know, none of that happened. So that made me feel good. So when I went back to work, work was just work. And like I've always done, I called Tammy at least, what? Three, four times a day?

Tammy: Ten.

Kelvin: Ten times a day? And I did that up until I retired. So even before Keenan passed away, I did that. So I still called her and, you know, just talked to her to see how she was doing and everything. But when I went back to work, the first day, when I got out of the car, the first thing I said to myself, I was like, "Oh, am I really ready to do this?" So, when I got out of the car, I saw two of my partners walking across the parking lot. And I remember walking into the precinct with them, and they just said to me, "Hey, KP, it's good to have you back." I said, "Hey, man," I said, "I appreciate it. I appreciate it." He said, "Let's get to roll calling. We don't wanna be late."

So, the lieutenant read out the roll call, and he was kind of a tough guy. You know, he was always serious, always hard-nosed, and when he saw me walk in to roll call, he said, "Well, let's start roll call." He said, "It's a good thing today. It's gonna be a good day." He said, "We got Officer Payne's smiling face back." And everybody looked around like, "What? He's saying something nice to somebody?" And that made me laugh because I have never heard him talk like that before. So, work was just like work. It was no problem, no problem whatsoever. I went back, everybody was talking to me like I was, you know, like nothing happened, and that made me feel comfortable. So I had no problem with going back.

Andy: And that's a big thing. We wonder, is work gonna be work? Is work gonna be...how am I gonna be able to handle that? And Tammy, so, what was work like for you? Did you go back at the same time as Kelvin, or was that different?

Tammy: No, I went back later, and I probably could have extended that a little bit longer, but I did decide to eventually go back. And before I did go back, I had a lunch with my manager. She told me that she had already alerted the team to not, you know, have conversations with me about that, and I would go back just in my normal capacity. So, that really helped, because I didn't get the sad faces or the, you know, sorry ..

Andy: The head tilt.

Tammy: Yeah. The head tilt. So, that was comforting for me, and because I was kind of separated because I was in an office by myself, it kind of helped that situation too because I wasn't interacting on a, you know, consistent basis with anyone unless I stepped out of my office. So, eventually, I did start to open up a little bit, because I know people were curious, you know, but it was at my time, in my timeframe. And that's what I appreciate about going back to work is that I didn't have any expectations to share something that was so personal for me.

Andy: I think that's big, like you just said. You know, even the differences in work, like Kelvin and I, like, I was a coach and a teacher, he's a police officer, we're in the public eye, like, boom, we're there. You were in your office and you were able to handle that, but I think what you pointed out about having that conversation with your employer, or with your, you know, for me, it was my principal, and I'm sure, you know, Kelvin, you had some higher ups there too, is setting those boundaries and say, "Hey, this is what works for me, this is what I need." And I think that's huge for us as parents is we have to take control of that, because we don't have control of a lot of these other things, and especially our emotions.

Work's one thing. We can sit in our office or we can, you know, compartmentalize our thoughts and hey, this is how we're gonna handle this, but you also have things like the grocery store. We don't feel like eating. There's times where I didn't even know why I was buying food. It was like we just did. But also, as Ellen's husband, I felt like I needed to take care of those things for her. Kelvin, did you feel like that too, that you needed to take care of those things for Tammy?

Kelvin: Yes. And I did them. I did them. I did them. I don't care if it was, hey, "I need one egg," I would go and get it. So it didn't matter. I went to the grocery store all the time. And I had no problem with it. And like she said, every time we went to the store, you know, it was like a neighborhood store, so every time we walked in the door, somebody was there that we knew. It never failed. Somebody was there that we knew. But I had no problem with it, though.

Andy: And Tammy, did that help you, knowing that Kelvin was gonna take care of that?

Tammy: Oh, yes. Because for a long while, I did not even wanna step outside the door. So I knew we had to have food, right? So he was that person to go to the store, to get what we needed, and I didn't have to do that. And so, eventually, we started going together, which is something that we really never did before, but I think that was his way of getting me baby steps for me to get out and to get back into the society, the real world, and just coping. So, yeah, I think that was a saving grace for me that he was there to do that work which I used to, do but he was there to do that for me at that time.

Andy: Life will hit you hard, We prepare ourselves for work, or we can prepare ourselves, okay, Kelvin, "I gotta go get this egg. I will do this, go home, I'm good." You know, things hit you out of the blue. You don't think they're gonna hit you and then, like for me, you know, I was just sitting there and I saw a little girl who had pigtails, just like Penelope did, sitting on a swing, and it was like all of those emotions just hit me, and that's scary because that's part of this new normal we have to figure out.

Tammy, were there anything of Keenan's that you tried to do or maybe you were like, "Okay, this will remind me," but it just didn't work out?

Tammy: Oh, yeah, absolutely. Keenan loved sausage. He loved sausage. And I would have it stocked in the house all the time because it was just something that he loved. And so, the first time, maybe a week or so after Keenan passed, I said, "Well, I'm just gonna make some sausage, just, you know, because that was Keenan's favorite." And so I started to cook and then right in the middle, I just broke down. I mean, the tears just started flowing. And I don't know where it came from, but it just started flowing and I had to stop cooking. And to this day, I don't like the smell of sausage and I've never cooked it since then. I don't even buy it any longer. I know Kelvin did, and he must have done it while I was not at home because I don't recall ever smelling or even cooking sausage again. And that's something that we shared, because I loved it too. And so we would have breakfast every morning together, and I just couldn't do the sausage any longer.

Andy: That's a piece of our grief story that a lot of people don't hear, because we think that some things are gonna always be there, and then it changes. And, you know, that changes our whole world too. As a couple, returning to church, or church family is big for a lot of people because we all cling on to something when this happens. Was that something you all went straight back to church, or was that another part of your lives that you really had to think about, you know, or maybe you did it differently?

Kelvin: Well, it took us a while. It was about a month or so? Maybe a month, or maybe a little better, before we went back, because like she said earlier, we didn't want the people giving us a sad eye and the tilted heads, and the everything's gonna be okay. And, of course, they did, you know, a couple of people did it, but that was just the first Sunday we went back. So after that first Sunday, it was okay. So it took us about a month and a half to get back into the church. And once we started back, everything was okay.

Tammy: And so that's where Keenan was buried, at the church. So, after those couple of months, it was comforting for me to, after church, go to the grave site just to see his grave, you know, just to have that conversation with him, because that's the last place that I saw my son, was being put in a grave. So, church, for me, although it did take us about a month or so to actually go back, it became sort of, I wanna go now, because I get to see Keenan's grave and make sure that it's clean, that it's manicured, and that is something that we do together all the time. We go and make sure that his graves have flowers on them and that it's clean. And in addition to us going back to church, I also taught Bible study to 13 to 18-year-old girls. And so, that was even more difficult for me to start back.

So I didn't start that back until maybe months later, after we started going back to church. And I had even thought about, "I'm just not gonna do this anymore. You know, this is something that...I can't face these kids," you know. They were right around my son's age almost. So I just didn't want to go back to that. But I missed the girls so much, and I missed teaching Bible study to, I just said, "I got to. This is something that I have to do." And it actually ended up helping me a lot because they didn't give me the sad face or, you know. It was just like, "Ms. Tammy, you're back," and, you know, "We're so glad to see you." And I just loved that because it was their raw feelings and it was, those emotions just took me to another place. And so, I really enjoyed going back teaching Bible study then.

Andy: You know, those are the times we feel like we're us again, and it comes in so many of these places we don't know. You know, for me, like that coaching, when I was around those boys, just like you said, I need to be around them, I felt I needed that. And I didn't know I needed it till I stepped out and tried it. And that's part of our story. And, you know, we talk about going to these places that we can really set it up, set ourselves up really well for it, but there's all these little things that pop up in this new normal, like appointments, reminders, because we're all dealing with these medical issues on top of just life in general.

And, you know, I didn't handle that very well because it really got to me when I would see, like, a future appointment for Penelope. And, you know, we didn't get a lot of mail because she wasn't old enough to really get mail or receive those things, but did you all have a way of dealing with, you know, if something was addressed to Keenan or maybe, you know, something came for Keenan? You know, I think that's interesting because I didn't get to experience that, but I know that that had to have been difficult.

Tammy: Well, Keenan was attending community college at the time, and I do remember one incident where Kelvin had to step in. We received a call, and this may have been like a week after he passed. He had an appointment with the academic advisor. And so, she called and she asked to speak to Keenan and I told her that Keenan passed. And she was like, "No, he has to come to this appointment. He can't miss it." She did not hear anything that I said. I was like, "Wait a minute. Keenan passed. You know, he's not gonna be able to make it." And she kept going on and on and on. And so I just gave the phone to Kelvin at that point.

Kelvin: Because she was thinking that she was talking about he passed her class. And I think that lady was, I don't know where her mind was. And I just had to break it down to her and explain it, because she wasn't getting it. And after that, you know, once we finally got that out of the way, as a matter of fact, he just received some mail last week. He's been receiving mail for the past five years, you know, and every piece of mail that comes to the house for Keenan, we'll grab it and put it in this drawer. I mean, there's probably about 150 pieces of mail back there, you know, and it comes in the mail, I look at it, I say, "Keenan, you're getting more mail now than when he was here." So, I mean, it's like when it first started coming, it would bother me, but now, it doesn't bother. I just grab it, look at it, and put it in the drawer with the rest of them. So it doesn't bother me anymore. And in the beginning, it did. In the beginning, it did.

Tammy: Yeah. And I think that academic advisor, I mean, I know she felt bad...

Tammy: ...after she knew that Keenan had passed away. And so, she took care of everything, like his withdrawal from the school. I mean, she did help make sure that everything was taken care of from his community college. So that was helpful, but it was definitely hurtful, because she just wasn't listening or asking questions. She was just on a mission to say, "Hey, he has to be in this meeting." And, you know, we knew that that was not gonna be the case.

Andy: You know, those are those things that there's no journal to grief, or there's no guidebook to grief, and nobody tells us that those things are gonna happen. So, you know, I appreciate you sharing that because that's something even though I didn't get to experience, you know, I can't imagine what some other parents, those little stories of those things that happen every day, that we have to get through, that people don't know about. Just like you said, when we say the word "passed," it has a completely different meaning than when somebody else says the word "passed."

I know a lot of our listeners have all these different situations that we have to work out, but just knowing that other parents are going through this is powerful, because you're not alone when you go through these things. And there's other people out there to reach out to you, and hear their story, and maybe they found something that you just shared. Maybe they put that mail in the nightstand, and one day, it's gonna be better, that you can read those. You never know what's inside. And that's okay.

How do you keep Keenan in your new normal? Like, how do you keep his memory going?

Tammy: So, one of the things that I do is volunteer for St. Jude. We had a bereavement support group that I attended. And, for me, that was so helpful, and it allowed me to not even talk sometimes, just listen to other bereaved parents talk. And if I wanted to or needed to share anything, that was the space that gave me the opportunity to do that and to talk about Keenan. So, this platform, working with St. Jude, is definitely a life-changer for me, because it gives me that time and space to not only talk about Keenan all the time, which I love doing, but to also support sickle cell.

Because when you think about, you know, St. Jude, you think about cancer patients. But St. Jude has an awesome sickle cell area where they support our sickle cell patients. So, for me, that's how I keep his memory alive and even started considering, or I am, going to start a scholarship fund for Keenan, and donate to his high school music department, because he loved music. He taught himself how to play the drums, he taught himself how to play the guitar, and the keyboard. So we still have his keyboard and guitar here, and I'll let Kelvin tell you about the drums that we recently just got rid of, because it was...we donated, because it was his suggestion, so I'll let Kelvin tell you that.

Kelvin: Yeah. Yeah. So he loved, loved, loved the drums. And he first started playing drums, he was in the seventh grade. That's when he first started playing at school. And the band director at the time was so impressed with his talent, he asked him, you know, who taught him how to play, and he said, he told him that he got it from his father, but I didn't play anything like Keenan played. Because he could really play. So, the other day, you know, we were doing some rearranging around the house and I suggested to Tammy, I said, "You know what?" I said, "I'm not gonna play this drum set. And if we decide to move or anything, we're not gonna set the drum set back up because it's gonna be a totally different place."

And I asked her, "What do you think about donating the drum set to his middle school band director?" And that's what we did. And I called him and he was thrilled. He said, "Man, I would be honored to accept that drum set." And as a matter of fact, I wrote on the inside of the drum set, I wrote, "Donated to Mr. Bale and the Highland Oaks Middle School band, from the parents of Keenan De Payne." And I put the date on there and everything. So, he was very happy to receive that 17-piece drum set. Very happy.

Tammy: And it still looks new.

Kelvin: And it still looks new. And for some reason, when he played the drums, every time, like if Tammy and I would go out, we could hear him upstairs playing, but as soon as we walked in the house, he was laying across the bed. It's like he didn't want us to see him play, even though he could play. And I would go upstairs and listen to music, and then if he would hear me listening to music, he would get up, and I don't care what I was listening to, he would get up, get on that drum set, bam, start playing whatever he heard. I mean, he could play it, I mean, like, within a half a second, he had it. So, you know, it was hard giving it up but, you know, it's gonna be in good hands. It's gonna be in good hands.

Tammy: And the way we keep his memory alive is by, because he has so much. We have clothes that we're still, you know, he has so much that we could give away, and we're eventually giving...we have given away his weight set, because Keenan was really into weights. He was all muscle. He was tiny, but he...

Kelvin: He was muscular.

Tammy: ...he was strong. And so, he would work out, and we gave his weight set. I think that was the first thing that we gave away.

Andy: Yeah, I think that's amazing. And you talk about...we talk about our messages of hope and our messages of why, and Tammy, bringing that awareness to sickle cell and that specific sickle cell, and donating back in the honor, and Kelvin, being able to take those things Keenan loved and putting them back out into the places that he loved, and the people that will appreciate him, and you never know that kid that might read that one day and say, "Who's Keenan?" And you get to tell his story again. You know, to me, that is a perfect message of hope and a message of keeping those things that he loved into the world that he loved.

And one last thing I wanted to ask Kelvin. Was it difficult for you, and I think this is, as a parent, this is something we all deal with as a bereaved parent, was going back into his room and maybe seeing his drums or seeing his things, was that hard or difficult, or did you go right back into it and that's where you felt safe? Because I know it's different for everyone.

Kelvin: Right. Well, it wasn't difficult. It was just a...I can't really explain the feeling that I had when I did it, but it's gonna sound kind of strange, but what affected me the most is that for probably the first year of his passing, every time I would walk by his door, you know, I was used to seeing his feet. You know, he would always lie across the bed. That's where he watched TV and that's where he played on his computer. So every time you walked by his bedroom door, you could see his feet sticking out, hanging off the bed. And I was so used to seeing that every night. So when I walked by there and I didn't see that, you know, it made me feel...I really can't explain how it made me feel, but it was...it took me about a year to get over that. So once I walk by the door now and it dawned on me, I said, "Okay, Kelvin, you're not gonna see his feet hanging off the bed anymore," you know. And it took about a year for it to play out, and it finally did. But it bothered me for a while. But going inside the room, it didn't bother me. It didn't bother me at all.

Andy: Tammy and Kelvin, thank y'all so much for sharing your story, and especially sharing Keenan with us, and all those things that he loved. I know we all have different experiences and different perspectives, and even different ways of supporting each other, but even just hearing your stories helped me in my own story, in going back and thinking about those things that maybe I did or Ellen did or things we did together and things going forward, because I know I can apply some of these things personally and keep in my family moving forward. Because as grieving parents, we don't have the time to ask why, but we only have the time to ask, "What now?" And I hope that anybody on their grief journey found some comfort, just like I did in your story, and they can tell theirs when they're ready, and just like you said, your message of hope and bring awareness to what they believe in, and keep sharing their child with the world.

Tammy: Thank you.

Kelvin: Thank you very much for having us.

Erica Kaye, MD, St. Jude Expert:

Hi, this is Erica Kaye. In our research team, we've had the privilege of partnering with parents of children with cancer, some of whom have died from their illness, to learn more about hope and meaning making. And our research team has published findings about the importance of hope, especially, during the child's illness even leading up to the death of a child.

I haven't had the privilege of meeting Tammy and Kelvin but from hearing them speak about their love for Keenan and their experiences, they are clearly incredible people and parents. And Keenan is clearly just a remarkable young man. And I was really inspired to hear Tammy and Kelvin talk about the ways that they have shared Keenan's legacy, not just to keep his memory alive, but also to help make the world a better place.

And I think this is a particularly powerful and transformative way to manifest hope. So Keenan loved music and he loved playing drums and being a part of his school's band program. And so when his parents donated his 17-piece drum set to his middle school band teacher, they ensured that Keenan's love for music would be shared with other children and would inspire others to love music, who would then hopefully go on to inspire other children who would inspire other children. And, in this way, Keenan's passion continues to pay it forward endlessly. That is an amazing gift. And I hope that Tammy and Kelvin can find solace and resilience and even hope in that gift.

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.