Oct 13, 2019
Today, I share a part of my story of loss. Elaine Brenner is my guest host as I move behind the microphone, telling the truth of my collision with death and surgery. As I listened to this episode, I still felt the loss; there is so much more that I would like to tell or share, the ways that Mercy and Moses and pain have impacted and changed me. But I offer this glimpse into my story, hoping it will help you as you live through your own challenge or help a friend through theirs.
11:01 – Liesel Mertes
But once you bury your child it's like. Oh there's nothing more to be done. You know there's nothing more to be done and you're just left at the finality of it all. It's hard because I feel like grief is such a profoundly isolating emotion. You know everybody's grief is singular to their experience.
INTRO
Today, my dear friend Elaine Brenner is guest-hosting, interviewing me as I share my story. I talk about the death of my daughter, Mercy Joan, and the multiple open heart surgeries for Moses. I consider on the limited tool-kits that we have for grief, the fear of forgetfulness, and releasing myself from the expectation of doing grief “well”.
- Elaine Brenner
So tell me a little bit about yourself please. Well how do you spend your days?
- Liesel Mertes
Well, I'm the mom of four busy young kids. They range in age eleven down to almost five. Moses has a birthday at the beginning part of June. So that's Ada is eleven. Magnus is nine. Jemima is six and Moses is almost five. So, they're busy in their own kind of way. Luke is my husband; we have a rescue dog named Tozer who he's been running away this summer but is hopefully going to replace the battery on his electric collar so hopefully he'll spend a little bit more time at home.
And we love the outdoors. We love hiking around Indianapolis. We're big fans of paddle boarding and kayaking. These are some of the things that we like to do around the city backyard bonfires.
- Elaine Brenner
And do you stay at home with the kids? Do you work outside the home?
- Liesel Mertes
Yeah I'm in the midst of launching this new entrepreneurial venture. For about the last year or so of which the podcast is one part of it.
What we want to do is to be able to Handle with Care create a software based tool that really helps managers and co-workers be able to know what to say and what to do as people go through disruptive life events. They feel usually pretty overwhelmed and under equipped in that kind of deer in the headlights moment where they say, oh no I have no idea what to say. And to be able to provide like targeted real time instruction of just behaviors that communicate care you know somebody who's come back from a funeral and their manager is going to see them in the next five minutes to be able to watch a little two to four minute micro learning module that says hey here two good things to say here.
Three things that you should never say and they can chance to practice and to be able to go in and then confidently be able to say something that communicates care and that's something that's really missing. Yeah.
- Liesel Mertes
As I talk with people around town you can just see it in their eyes you know I was with a woman over coffee who's a prominent lawyer here in town and, and she goes: Oh yeah, you know the year where my mom and my only sibling died within six months of each other and nobody knew what to say or what to do.
So, I think there is I think there is both a market need and a human need.
- Elaine Brenner
I think there's a human need outside the workplace too. I don't think there is a lot of expertise or knowledge around what to say what to do how to handle when friends or family go through times like that.
- Liesel Mertes
Yeah. And that I mean most of us have had that experience at least at some point of even you reflect on the comfort that you've just offered and you go Oh my gosh, I said the wrong thing too, shoot.
- Elaine Brenner
Yeah yeah. So tell me about your own experiences with the grief where you crossed paths and that same way.
- Liesel Mertes
Yeah, well I didn't really have that many people die or super sad things happen in my youth. I had a grandmother die which was sad but expected until it wasn't really. You know my major intersection with a disruptive life event first happened it was I was getting ready to start a grad program down at the Kelley School and they, they offered me acceptance and a week later I found out that I was unexpectedly pregnant with our third child.
- Elaine Brenner
And how old were your first two?
- Liesel Mertes
They were three and one, so little at the time, they were little. And I thought that's OK. We can manage it well we'll figure it out. I was even prepared I was gonna lead a student trip to Ghana in the second semester and I remember pitching to the student services and saying, I will have delivered you know this little girl a couple weeks before but I'm sure that she can come I've travelled internationally with babies before like they're super easy. Like, I had a very blithe sort of an idea of how the young having a baby in grad school and all the things I was going to look at that was in 2010 but my 20 week scan they saw that Mercy.
- Liesel Mertes
That's what we named her, Mercy. Joan had a pretty profound gall hadn't closed. There's a category called a neural tube defect. So, if it's lower its spinal bifida if it's higher it's anencephaly, which is always terminal. But with this encephalocele, she had this large fluid filled sac on the back of her head and the doctors weren't sure. They said there's a range of outcomes we could be able to do surgery. She could have know mild disabilities all the way to this could be terminal. So, we were meeting with neurosurgeons and hospice and still going like to finance class and traveling out from Bloomington.
- Liesel Mertes
And I had taken care of two small and taking care of two small children. And Luke, Luke was helping. I delivered her on February 15th in 2011 full term full term. And it was it was clear that doing anything would be doing things to her and not for her.
- Elaine Brenner
But you didn't know that priority for those 20 weeks you're operating kind of limb right.
- Liesel Mertes
Just waiting and her spinal column was hollow and she had this lack of connectivity. She couldn't breathe on her own she had to be intubated right away.
So, so they, they took her and got an MRI right after she was born and they came back and they said you know she's not a candidate for surgery which is horrible. I mean it's horrible. We spent two, she lived most of her days in the hospital. It felt important to not have her be alone. We had we had a family that had come from all across the US. She was always being held we had people take different night shifts and everybody knew that what her diagnosis was. So my sister would play the ukulele for my brother.
- Liesel Mertes
He wanted to show her a clip from Last of the Mohicans because he felt like no, no one should that's an important life experience, just seeing this. And she died after eight days of life. We were able to take her to a home hospice.
- Liesel Mertes
And then like you wake up the next morning to your still two living children and you know that the life that extends beyond that moment is
- Elaine Brenner
So for you as I've been thinking about this one thing, I wondered there is a particular kind of grief that happens when you're faced with the unknown. For those 20 weeks of maybe it could be mild disability maybe it could be death. And then the grief of post mortem you know post Mercy having died. How did those times differ for you?
- Liesel Mertes
That's a good question. As, as she was still in utero you know we had a reason to be hopeful. You could still, I mean I remember like pray and every time going for these scans we had to come up to Indianapolis and thinking like maybem maybe it's possible maybe she could just be, she'll just be right. You know maybe she'd be OK. Which was profoundly disappointing. You know in its own way although, although I didn't necessarily think like it's gonna have you know every time it's like now it's still there.
- Liesel Mertes
Right. Still there. And there's also that time is full of still a lot of like planning and logistics and you figuring out like care for your older children and hospital visit. So, there's something like distracting in its own way of all the things that need to be done. But once you bury your child it's like, oh there's nothing more to be done. You know there's nothing more to be done and you're just left at the finality of it all. It's hard because I feel like grief is such a profoundly isolating emotion.
- Liesel Mertes
You know everybody's grief is singular to their experience. Luke, my husband, um you would want to think you're the other parent like you've shared this thing with me if anyone can get me in this. It should be you. But he was so compromised in his own way that you realize like the support you can offer the other person is really limited. And his grief journey was colored by his own moment. Like, I would have moments where I would feel like I can't do anything I can't go on. I'm so sad.
- Liesel Mertes
And he would feel important for him to be like, no I need to just get a house we've got to do something we need something normal. And like the way that you miss each other in those moments I think it's hard.
– Elaine Brenner
I think it's hard in any relationship but especially in a marriage relationship. It has to be hard to allow the other person to do the thing that they need to do. If it is absolutely not the thing that you yes. To be able to grant that like OK this can be your journey.
- Liesel Mertes
It also necessitates, I find for me, like finding supportive people who were they can sometimes talk about like circles of grief like people who are most closely impacted and then as you get out then there's like OK family there next and then there's maybe like friends and then there's acquaintances and the further out you are from the circle, like that interior circle, the more you have a capacity to actually offer care because you are not going through your own stuff in the same kind of way.
- Liesel Mertes
And there are definitely people that really stepped out for me in that and I realized how much I needed that like I couldn't just if I was just depending on like Luke. You have to be something for me. I would be profoundly disappointed and I would be disappointing. And the question like you asked about their grief afterwards. I was just I was tired.
- Liesel Mertes
I'm someone who, something I like about myself as I have a pretty wide capacity to like take on tasks and relationships. I like that I can handle a number of things and to just know in a physical sense like, no I can't, like I can be a fraction in all of these roles of what I was and to set with like I'm not like in my mind I was like I'm not a good daughter right now. And like I'm not a good mom I'm not a good student. Like, compared to what I was I felt like I was, just operating on like, two cylinders and that was more of an internal thing would be like I don't like myself right now.
- Liesel Mertes
All right I feel like I'm such a I like shadow version and to wonder like do other people like being with me because I don't even really like being with me right now.
- Elaine Brenner
Well it takes grief takes up so much of the margin in your life capacity wise emotionally physically everything else but there's just so little left right to take on anything else.
- Liesel Mertes
Exactly. I was like I'm, I'm so much less,
.
- Elaine Brenner
So this really is the best version of myself.
- Liesel Mertes
Right. And I don't like, I don't like it and I'm sure you don't like it. Yeah yeah. So.
- Elaine Brenner
So what ended up happening from a grad school standpoint? And how did you continue with the program?
- Liesel Mertes
- I did. So, Mercy was born. I don't know if it was a serendipitous timing. There's never a great time for a child to die but it was right at the beginning of spring break that actually my water broke and I delivered her so is this interesting time in that there was this totally intense week. And then for us, I was in the midst of grief; you just feel things really, there I felt in my experience the things I knew I wanted I wanted very strongly and there were lots of things I didn't know I wanted but it felt really important.
- Liesel Mertes
I was like, we have to get out of town like we have to. So, I called the woman who was, she didn't know me that well, she was my mentor within the program and I said, Can you please use your house in Arizona? And my daughter just died. It's just hard to say no to that. So, we went to Arizona for a week but then we came back and it was time to start the second semester
- Elaine Brenner
And talk about the challenges there.
- Liesel Mertes
I'll step back for a second. Something that was that made that return to what was ostensibly my place of employment easier was actually, I you really I look back in this work that I'm doing and think, I was well met by people there, they um they had a director of Student Services Gayle and Gayle had just, you know, kept her abreast of what was happening but she she showed up like in the hospital room in Indianapolis She had with her a handwritten note from the Dean of the business school and again.
- Liesel Mertes
She she said at the time, she said you know, is it would you be OK if I let all of your professors know just so you're not having to explain it all the time. She functioned as something of a point person. She got all the news of like funeral details. I had a number of people for my MBA cohort that showed up actually to the funeral of the Dean of students was there. Gail was there all of which I didn't actually change like the horrible reality that she had died. And it was super hard but it did make me think when it was time to return of like OK.
- Liesel Mertes
Like people have seen me. It's not gonna be this orphaned experience but still there were the challenges coming back because I'd been so visibly pregnant and some people had known like that it was kind of a complicated pregnancy other people just knew I was pregnant right. So, I come back and I'm not pregnant. And, of course, you know people are like you had the baby and like they're excited.
- Liesel Mertes
Right. And that you know it's just passing in between classes and then is that choice of like, I feel like I have what. So, it's and it's a strange thing that can happen then you find yourself like managing their response because they're obviously like devastated they thought they were just going to finance class.
– Elaine Brenner
Right now I'm the person that asked a woman and child and then you find yourself sometimes uncomfortably.
- Liesel Mertes
I mean I had to I had to actually coach myself to not do that because you can get in the mode of being like No it's okay. I know you didn't know.
- Liesel Mertes
And then that's like doubly emotionally draining to me. So, I had to be like you know it is not my job to manage them but I mean that was exhausting some way. And some people were like some people did find I just remember one, one woman in the bathroom and I told her and she's trying to care for me and she's just like she's, she's running through her mental database. And when she came on she was like You know I read this this story and I think I was like a Maori tradition that dead children become butterflies.
- Liesel Mertes
And she just left it hanging there. I just remember like I wasn't so much I was deeply offended but I was just like, I don't, I don't even know what do I do. To say it and I was like well there's a lot of butterflies this time of year.
- Elaine Brenner
Let's get back to class. I got it.
- Liesel Mertes
I decided I was taking a fuller load. I was taking an Excel spreadsheet modeling class that everybody said was like a super great class to take. And I remember, it was like two days before classes were about to start. I remember looking at my schedule being like, I don't have to take that class and I I'm not going I'm not going to take that class. Same thing, the summer internship is a big thing in business school and I'd had it like all lined up I interviewed and I remember taking stock and thinking, you know there are a number of reasons this would be good to do but I don't actually have to..
- Liesel Mertes
And that took its own, I mean, I felt for me and wanting to please people and do the right thing it took its own amount of courage to be like, I'm not actually going to definitely I'm not I'm gonna like have some time to be a year to be present with whatever is going to come up so that that summer and that spring like I made time to like, I'm just gonna go for super long walk and be with myself and try to distract myself.
- Elaine Brenner
So when I think something that has always, always impressed me about you or I've always noticed about you is your intentionality around grief that I didn't know you at that time but I think I met you pretty shortly after that and the way that you honor your grief and probably your family's grief too. And Mercy and how that even all these years later it's still a mark for you. You know you still come back to it and you honor it. You don't push it away. That was a long time ago. I don't need to worry about it.
- Elaine Brenner
I don't need to feel it but you allow space for it. So, what types of things do you do now that allow you to kind of visit that and give it the space it needs?
- Liesel Mertes
So, it is something that we've tried to, to build into our family rhythms to talk purposefully about with our children we wanted to you know that's a that's a that's another like, very broad and important you know conversations like, how do you how do you do that with children?
- Liesel Mertes
I've gone through the loss and you know how do I attune myself to their grief was still in the midst of my own and honor that it's been important to talk about with our children our two children that have come after Mercy of understanding like this. She is a part of our family her picture, so we have pictures that are up in our house and a prominent sort of a place some tactile things. My mom, she makes beautiful quilts. She had made to she, she felt just in in her spirit like that she would die. So she, ahead of time, it just felt important to her that we're making these two little quilts to bury Mercy.
And one for me to have so that's still like I'm very prominently atop my desk in my room. So it's important to see things. And that's something that people gave us like different gifts. There was photographers. We have a friend who is, he is very artistic photography is one of his expressions, Mark. And he came down from Chicago to take pictures of Mercy while she was still alive. So I treasure those thinking and to have them.
People give us things like shawls or, we have a box that has like her physical memories in it. And I can't quite bring myself to like, I still I think I have I think I wrote a note on the back of a receipt that I taped to the door in the hospital of like hey I went down to get food. You know if anyone visits but even that like it is just like a physical marker of the time right. Can't quite bring myself to like get rid of this scerawled note that I got the receipt right.
- Liesel Mertes
But year in and year out from the time of year February is um, I still feel it like physically in my body the anticipation of it. Those days feel momentous. Luke and I for a while we, we would go away together around that time which was its own mixed bag.
- Liesel Mertes
Sometimes when you're missing each other then there are years where I feel like I was I just got away by myself. I tried to share this with you not so much about him but about right. I don't know, I never quite know what I need or want right because and I've had to like learn how to release that in an annual way.
- LIesel Mertes
So we've tried a number of different things. What I have to release emotionally is that no matter what we do it never feels good like it never feels right. And I can get into this cycle of like
- Elaine Brenner
I haven't quite scratched that itch.
- Liesel Mertes
I haven't done it like especially from my personality like I haven't executed well the grief. I want to honor a lot of. And I just it was like I don't know maybe six years ago or seven that I really like it's always gonna feel bad because she's always dead.
- Liesel Mertes
That's sad. And like you can't ever get around that like it can be the day that like touch it you know checks all these boxes and I will always feel like exhausted and incomplete because it is incomplete like right then it isn't right. It's not right isn't right. And it feels like
- Elaine Brenner
Cupcakes don't make it right.
- Liesel Mertes
Cupcakes are great right. You get it from a good place. But yeah they they don't touch that reality anymore.
- Elaine Brenner
I'm wondering after Mercy died what ways because part of your job was school and part of your job was mom. And so, what ways did you find or looking back do you find that you were missed and those capacities? And did people tell you or did you just intuit it because you're you?
- Liesel Mertes
How Mercy's death intersected with aspects of like faith or purpose or who you know I was in the universe or who kind of like those were major themes like me you have something horrible happen. There was a lot of those things called everything into question. And there is a certain way that people of faith can talk about death which can, can feel really packaged and switching. Kind of like cliched and it was out of a number of well-meaning places but like well there's, there's a higher purpose in all this.
- Elaine Brenner
And I made an angel.
- Liesel Mertes
Oh that was one of the worst statements like that God needed an angel just those like pat phrases that I felt like flattened out the reality of like you're seeing me like you just saying a thing even if I might come around and like the thing you're saying like that deliver you right. It felt abrasive and it felt like there was no great way to respond to that. Like even if I was at a place where I just thought like, That's crazy, you're like you, you can't really say that somebody is dumb.
- Liesel Mertes
So you left to the position of just like nodding kind of I and maybe, maybe if I had a little more chutzpah. I think it's I think I would artfully say that now to people who like who I observed saying those things, you know, I might pull him aside after that think, like, I do really want to imply what is being implied in that?
- Elaine Brenner
Right. Yeah. So I think it's it's a lack of those ways and lack of knowing. Again, I think this speaks to the work that you're doing the lack of knowing what to say right in the void of options. People pick the thing that's most palatable to them. What was recently said to them right.
- Liesel Mertes
They have a limited toolkit. Yeah. Like I've got a hammer, I've got a wrench and I've got God has a purpose. So and like, the upside people who did things well I mean I am what I really I didn't even know what I wanted.
- Liesel Mertes
I can't even say like I wanted this and people failed. But something that felt meaningful was that people were just like, that's really hard right. I can remember telling someone and, and he was he just drives like that's just one of the worst things I've ever heard. He, he, he dropped an expletive he was like, Yeah. And I felt like resonant in its own way.
You know it is physical gestures. I remember like I'm Mercy died, she died around maybe ten thirty p.m. And then there was this like process wanting to like spend time with her body that felt important and you know we wanted to do things like get footprints or handprints, where you didn't wanna do that while she was alive.
- Liesel Mertes
So my mother and father-in-law and I were doing that, but by the time the undertaker came, you know it's such a strange thing you know this person who arrives at like 3:00 in the morning in a black suit. And he came with like a quilt that they put, I have always appreciated even that little attunement. I got him to say waking up the next morning…
- Elaine Brenner
And you'd given birth giving birth eight days beforehand. So, all of this like regardless of the outcome you're still a person who has recovery
- Liesel Mertes
Um but I remember waking up and you don't even know like having encounter that day and my sister came downstairs just kind of silently with an English muffin. And I was like, yeah, I do just like one in English you to eat and eat um and, and especially in the immediacy, like people showed up to clean my house or detail my car right give us gift certificates. Easter was not so long after and I just felt horrible, it felt horrible to be doing like Easter. I felt horrible, like the weather was crummy and, you know, we had an MCL gift certificate which at least I was like, well at least we can get something that's you know we can eat.
- Liesel Mertes
So those, those physical gestures felt like deeply meaningful and right it somebodies frames couldn't quite hit the mark.
– Elaine Brenner
So and talking about those kinds of gestures and talk about say the ensuing months were there things that people did. You've talked about Gail and Mark from student services and the photographer to me. Those things strike me as things that only that person was able to do or that that person specifically was able to do maybe that, you know, Gail couldn't have shown up and taking great photographs you know. So what were things, what are the things that stand out now as you look back over the ensuing months that people did to support you that were unique or specifically very helpful?
- Liesel Mertes
That question makes me think of people who gave out of there, like you said, people came out of a specific skill set, like the person in detail my car and I'm like, he was just really good at cleaning out cars. So, he felt like, you should have this. I could do it. You should have a clean car when you drive to the funeral, which I never would have thought of asking for.
- Liesel Mertes
I didn't I, I in my mind, didn't think I cared about my floorboards and I probably didn't you know notice that but to, to ask yourself, what what am I good at doing that I can give freely because sometimes people offer help to people in grief like, let me know if there's anything I can do and what if someone says to you I'd like for you to watch my children and you think I hate children and
- Elaine Brenner
You don't want me to watch your children.
- Liesel Mertes
Right. So, to be able to think specifically like, I am really great at mowing the lawn and I do it on Tuesdays and Thursdays.
– Elaine Brenner
Well plus, I say the hard thing about when someone says, let me know what I can do I'll do anything. Then you're just putting the onus back on the person that you know barely has the energy to shower much less put together the schedule that they have or whatever.
- LIesel Mertes
Exactly so to be able to do it what you can offer meals were great. As I as I said we were living in Bloomington. So, there were people who drove down you know the like clean our house. I. It was later, I mean Mercy died in February, by Christmas time that you know even that next Christmas time, I felt still it's like such a low ebb. My mom was like, I'm going to decorate your house for Christmas like, which was great. I always appreciated people checking in. I think sometimes there is this fear of like if I bring this up you're gonna be sad.
- Liesel Mertes
And I remember even, you know, just my, my business school classmates who would who would ask like, hey you know, how are you doing with your sadness? And even to the level of people who were insightful enough to say, I know this can be like hard on your marriage how are you doing with you and Luke. And there were sometimes that I didn't want to talk about that like that's also it's good to ask those questions.
- Liesel Mertes
You also should be prepared that sometimes people want to talk about that and sometimes they might not and not be offended and be like, you didn't want to I asked you this. So, people who can like take that with an open hand. And also, I think something that was helpful was like there were times where I was I was just doing my work like I was facilitating conversation or preparing for a presentation and like doing a good job and to be able to just recognize that like you did a really good job in that presentation. I think for me and a lot of people you you can doubt your competence and capacity. So for people that come alongside and be like that's a great point.
- Elaine Brenner
So you then had Moses and the experience with Moses could potentially have been similar. So talk about that a little bit.
- Liesel Mertes
Well so, it's this totalizing thing to have a child that we knew when I have children after Mercy. Jemima was our next little baby. She's delightful she's almost seven. Thankfully, I actually didn't feel like that was a pregnancy that was overshadowed by a lot of apprehension or fear. It could have been it just wasn't, in my experience. There was something that I felt was different with Moses. We were we were going to go on vacation over with, with extended family over New Year's. And I remember feeling as we were down on this beach just thinking like, and I had a 20 week scan coming up in January and just the sense of, I just, for whatever reason, like I can't wait for that to be over. And it was just this like kind of like hang, hanging I haven't felt that with Jemima, I just want it to be past that in a roundabout way. That felt like aspect of confirmation as we went in. And once you've had a complicated pregnancy, they tend to take you for a more in-depth scan and that the doctors were up in Indianapolis. They said it's a boy.
And um and they left and Luke and I had maybe five minutes of sitting there and we actually said to each other isn't it so great to be in this space so many people are getting such hard news. Isn't it great. Just not. And look we're going to have sons; he'd always wanted a brother. So this was gonna be the second boy. And so, then that moment where the doctor comes back to tell us about Moses his heart condition, which is unrelated in any way to what Mercy had to say.
He's he's entirely missing one of his valves. Tetralogy of fallot with pulmonary atresia. It's, it's different in the last 30 years what they can do with the heart is staggering, that I heard someone say I think was my father. The brain is much more like a complex computer. If something goes wrong with that, you know just the impact is huge and very complex. Whereas the heart is much more it's like a pump, you know and how they show this condition actually and Riley specifically is a fantastic hospital doctor John Brown pioneered some of the cutting edge procedures and he was Mo’s surgeon.
So all those aspects of prognosis were better. You know if you're going to paint a rosy picture of like, well this is better
- Elaine Brenner
But 20 week scan 20 week scan.
- Liesel Mertes
Right. Right. And the horrible thing of just being confronted again with like there's something I can't control for my child and I'm so sad about that. I didn't, somebody could very legitimately feel like, why me like I, that actually, I felt occasional aspects of that but it was more this sense of like, oh I've stepped in the world of now like I've heard so many stories like this complicated things wrong miscarriages disabilities young children dying. If anything it felt like, it is a crapshoot. And totally random. Why not me again.
- Liesel Mertes
It's a different journey with surgeries and medical intervention and preparing, you know Moses had his first surgery when he was six days old so I remember like, again, delivering a baby. We couldn't even be in the same hospital; he was taken by ambulance I delivered him at Methodist he had to be taken by ambulance to a different hospital down the road with Luke. So, we're not even in the same building. I'm having to get chauffeured over there by taxi. He's gonna have surgery five days five or six days later.
So I'm figuring out like logistics for my other kids. Magnus is having preschool graduations. I'm three days postpartum bringing cupcakes to Magnus and then going to Riley where Moses is in surgery and just all of these like moving parts. And Moses has had subsequent surgeries, he's had a couple of catheterizations and few open heart surgeries. The support around our family of like preparing for surgery again. Meals, help with children. Something that was so particular is we have had a group of people who have stayed with Moses through the night at the hospital. You Elaine are one of those lovely people because we can’t stay 24 hours.
- Elaine Brenner
But I think that speaks to your again your ability to kind of honor what the needs are in the moment because I think there are many people who certainly could benefit from having people around them do that and probably have the people around them willing to do that. I mean I know I felt both I don't know. Honored and sort of special that you would trust me to stay with this baby you know and in the hospital and while you could sleep and liking to be asked and liking to be able to do it. But I think there are a lot of people who don't know themselves well enough to know that they would need it or even if they know it feel that they couldn't write well
- Liesel Mertes
And maybe, maybe that circles around to like I don't remember ever feeling shamed by asking for help although that was a fear right. Like, I think if anybody would have done that to me it could have caused significant shut down like, if somebody had met me and been like why do you need. Like, shouldn't you be with your baby through night.
Which maybe gets to like the importance of healthy people if somebody does actually ask try not to make them feel like a burden. I can have its own, but yeah I feel like people honored that and it was super helpful and important. And then there's, like you just need this new support in the aftermath of you know like after heart surgery he, you're kind of homebound for a while because he can't get sick. He can't go out. So, having people come and visit and or take the other children out there are people who is a great thing to be able to do.
We had people friends of my parents who they've taken upon themselves that anytime Mo’s having surgery like they're going to bring a bunch of food to the waiting room because we're usually there through lunch.
I think you've been there and so you know I think in the past we've gone. Indian food delivered or brisket. It was great like the last time we had this fantastic barbecue and the physicians came out these this surgeon and the attending surgeon and they gave us the news and it was this gift that we've been given to have food but we're able to actually extend that to them. Dr. Brown would you like to have some? Yes he does. I'd like to do that before. So there's things that we're good.
I like cards; I like it when people check in. You didn't ask this, but I think sometimes, especially people who are far away and they wonder how they can be supportive. I've had friends likes and Starbucks gift cards or just emails and I always appreciate that.
- Elaine Brenner
So do you think your experience with Mercy when you got the news about Moses. Were there things that you thought you know. Again not not the same but you were sort of dealing with that limbo feeling of, of what's going to happen here and just the grief of I know this isn't going to be smooth sailing from here on out. So were there things when you got the news about Moses that you thought, OK I know I need to handle this differently I know I need to do this?
- Liesel Mertes
Yeah I think that I, I feel very refreshed by being outside by moving like to be in like to go on a walk or to be on a trail run or paddle board feels it's something that fills my cup in particular ways. So, I think I knew that about myself in a different way. That's, that's not a selfish thing. That's an important thing. So, I should honor that. I think I knew I knew more about that stage of life how I, I wanted a community of people that were like in it.
I had realized actually that to be able to talk about your struggles or the hard things actually I had found opened up a vulnerability in other people. And like, they move towards me and support, like I had found, whether that was in a women's study group that I was in or just like friends at that stage of life had actually been a really true way of connecting. So, so I was much more comfortable like putting that out there and expecting that people would meet me right.
- Liesel Mertes
I, even though we anticipated it. I mean, it's hard on your marriage and there's a reason statistically, I mean, people will quote anywhere from 60 to 80 percent of marriages where a child dies end in divorce. And it was, even though I anticipated it would again, be super hard and stressful in my marriage in a way that you know, we've, we've had to revisit in subsequent an important marriage counseling. And even, even like knowing that I would actually say that the stress of there was the stress of Moses but like the stress that it was in my marriage and in my relationships only like compounded and exacerbated that I don't evenm, I mean maybe if we had had better self-knowledge and counseling prior to that we'd had counseling but yeah, I'm sure it was impactful. We've had more targeted better counselling since then.
- Liesel Mertes
I wish that could have been different, but it almost felt like inevitable because for both Luke and I so value our parenting. You know, we will take our stress out on your kids, but there is this sense of like, I am so stressed out there's so many things I shouldn't take it out on my children I'm gonna really try hard not to. And they're just relentless. Children are relentless. They, they kind of know, they kind of have a sense but they just need a lot because they're kids. And so, you can spend all day keeping it in check and trying to do a good job. But then when it comes to the other adult in the household if they need anything or step out of line it can feel so like deeply offensive like you to like how great you need something or how could you drop the ball.
And that is its own, you know I don't want to be that way in any of my relationships like that begrudging of like, there's no space for you to be weak but in a roundabout way, like that would be the outplay of it. So, I wish I could have been different. I'm, I'm glad that we weathered it enough but that was like a painful aspect of something that even I could see coming. But almost like it couldn't stop the train right because it was so immediate.
- Elaine Brenner
You're just surviving better.
- Liesel Mertes
We don't do that as much. But then again, we don't have a child like in medical crisis. And our kids are a little older. It changes it.
- Elaine Brenner
So so, given that now you've gone through these two in some way similar but very different kind of grief inducing experiences, what insights do you have to share with someone else going through something similar?
- Liesel Mertes
It's going to be really hard. It's just really sad, especially if it's touching on the health of your children. I mean it is. You never think that you would have to bury a child is horrible, horrible. It's universally recognized as horrible.
I, I felt, you know for me again like God and purpose, like I felt God as gentle towards me in the midst of that. And especially like there are people that might encounter like someone might be listening and you might not have a great community you might be surrounded by people who are like rushing you or don't have time for your sadness. And that's really hard. I hope that people can be gentle with themselves to allow themselves the space to be like a day might be full of so many complicated emotions.
You know, you might be like sad detached happy over like, in the space of an hour and just, like give yourself the space to have grief be messy and nonlinear. But I have also experienced that there were chapters like beyond the immediacy of that grief. And that's not to paint some rosy picture like oh it's all gonna be better because I mean sometimes it's worse or different but just that like it will not it will not feel the same as it does right now.
- Liesel Mertes
Knowing, knowing things that are life giving you might not know much. You might only know like I love eating french bread right now. Or like I just I really need to go for a walk or you know I, if, if you know it like, it's good to pay attention to your gut and what is leading you in. And that there's like, I don't know there's different ways to carry it. There is a hardness but also a sweetness to like…I, I am, over the years like integrating Mercy a lot more into my life. But like my, I think that fear is like, that this person will be forgotten like no one might, my child will fade.
I don't know. I don't even have something like that a real thing. But I find, year in and year out like, she continues to be an important part of our, our family and our, I think and this is like a roundabout way for, for anyone who is in a caregiving position like, you work with someone or you care for them, that that with a child who has died like that is a real fear: no one, one I will.
I, I mean, I was even feeling this last year. It is important to be able to carry that memory with them, you know, if you're someone that remembers their name and they remembers their birthday that is willing to speak that it's always meaningful to me.
- Liesel Mertes
It like, even people who, you know, maybe they read like the blog I was keeping at the time and they told me years later and it feels like, well it feels like one more way that Mercy is made real in the world. But even this last year I was I was reflecting on my, my parents died, like I was picturing myself as an 80 year old woman, should I live that long. And I was like, right now my kids like, I take them to remember Mercym like we do things but I'll probably be living their whole lives like when they're in their 50s or 60s like, will this day still be important to them?
Like I hope they still remember, but like my mom will be dead, my dad will probably be dead. You know, all these people. And I was like, I'm going to be like celebrating Mercy's birthday all by myself. So, I called to my sister, I was like well you do like little road trips with me? We could do that because from your entire life know that might still be the case but I'd love to just hope that I have the necessary resilience to deal with that.
MUSICAL TRANSITION
It is a particular thing to really listen to and reflect on your own story. I can hear some themes that remain the same over the years and others that have shifted and changed with time. We are always in the process of becoming alongside of our stories. But for today, here are a few key takeaways that I have, after listening to my story.
- When you offer help to someone that is hurting, give specific examples of ways you want to help instead of a vague, “Just let me know if you need anything.” This statement puts the pressure of imagining tasks and organizing logistics back on the grieving person and sets you up for failure if they ask you to do something that you can’t or don’t want to deliver on.
- Be purposeful and careful with your language around purpose and meaning, especially well-meaning clichés. Take a moment to pause before you speak. Trite turns of phrase are rarely comforting and often hurtful. Instead, offer a hug or a sincere, “I am so sorry you are going through this.” You don’t have to make meaning for a person that is hurting.
- A real fear for parents of dead children is that their child will be forgotten. Take time to write down important dates like birthdays. Remember the parents around Mother’s or Father’s Day. Take time to say the child’s name or ask the parent to share a memory. These acts of attention and intention are so meaningful.
OUTRO