Sep 16, 2019
When tragedy impacts in the life of a child, it can be difficult for adults to know how to help. Ada June, age 11, had a sister die and a brother undergo multiple open-heart surgeries. She shares about death, the power of remembering, and the importance of being able to self-advocate in the midst of pain. There is wisdom here for anyone who is walking with a child through sadness as well as for those that support parents during times of disruption.
- Ada Mertes
I remember telling you and Daddy when I was younger that I was afraid that my grandparents were going to die or that you were going to die or that I was going to die. I was afraid because it was, now something that was going to forever be a part of my life. And it's, it's something that actually really stays with you. Not like the fear but just like the feeling of loss. And there's always a slight feeling of, there's always something that's never going to be perfectly right because you know, something, a part of everything's not there.
INTRO
My daughter, Mercy Joan Mertes, died at just eight days old in 2011. In the coming weeks, I will share more of my personal journey with grief and mourning. The sadness of her death affected every area of my life: my graduate studies, my marriage, my friendships, and my parenting. Parenting. I was still the parent of Ada and Magnus…and part of my role as their mother was to help them navigate their loss. This was not always easy. I was exhausted, wrung out by the emotional challenges of my own day.
And yet the task of translating and interpreting loss, of listening to children as they go through their own grief journey, is so important.
So today, I am beginning a mini-series to talk about childhood disruption. Over the next three weeks, you will meet three of my favorite people: Ada, Magnus, and Jemima Mertes.
It is my hope that these reflections from children help in three potential ways.
- They help you better companion the children in your life that have experienced or are right now experiencing disruption. If you don’t remember, childhood can be hard. There are scraped knees and neighborhood bullies. Someone is always deciding when you go to bed and what you have to eat for dinner. Now, factor in a divorce or a cancer diagnosis. It can all feel pretty overwhelming, for both kids and adults.
- These episodes help you show more empathy to friends and coworkers that are parenting children through seasons of disruption.These adults are not only managing their own sadness and exhaustion, they have little people that are looking to them for direction and guidance…and that is a really particular burden to carry.
- Maybe these reflections help you to encounter your own childhood disruptions through a different light, to reflect on the ways that you were met or missed and how that empathy (or lack of empathy) might still be affecting you now.
But first, some context. In the fall of 2010, I had just started business school and was pregnant with our third child, a little girl named Mercy Joan. I found out, at the 20 week scan, that she had a birth defect called an encephalocele: the base of her skull had not closed. Doctors were unable to gauge the severity of her condition…they wouldn’t be able to tell until she was able to have an outside the womb MRI. Mercy was born on February 15, 2011. She could not breathe on her own and she died after eight short days of life. Ada was three and Magnus was seventeen months old.
Two children followed Mercy: Jemima and then Moses. Moses was born in 2014 with a serious cardiac condition called tetralogy of fallot with pulmonary atresia. Let me put that in layman’s terms: an optimally functioning heart has four valves…and you need all of them to survive; Moses was only born with three. Without surgical intervention, he would have turned blue and died. He has needed multiple open-heart surgeries.
When I was a child, I remember that out postman died. Apart from this tangential loss, nothing really horrible cast a shadow over my childhood. This is not the case for my children: they have had a sister die and a brother need significant medical intervention. Along the way, they have asked deep questions and found meaning in the midst of pain.
Today, I’d like to introduce you to Ada, my eldest. Ada is 11. She has one of the most active minds I have ever met, she is always analyzing, assessing, and making connections. She is kind and vibrant. She loves to read and run and she began Middle School this year. Ada is the big sister in our house.
Ada Mertes
- So, I have a younger brother who is 9 years old and he he's really funny. And he, he's really, he's just a fun guy to be around his name's Magnus. I have a 7, 6 year old sister, Jemima, and she's she's really really perky but she's she's always doing all these different things and she's always doing something and she likes crafts and Moses who is five years old now. Yeah. And he he's really rascally. But he's also he can be really, really sweet and then Mercy who would be eight. And yeah.
Liesel Mertes
So talking about your siblings is one of the reasons that we're here today. Could you set the scene for us a little bit about how old you were and what point you're at in life when Mercy came into your world?
- Ada Mertes
I was three years old and I was expecting a baby sister. And when she was born, she was born with a birth defect in her brain. And so, I, there was my little sister and I was three years old and Magnus was one.
- Liesel Mertes
What do you remember about finding out that I was pregnant about your sister about her arrival? What really sticks out in your mind about that time?
- Ada Mertes
I was thrilled when I found out I was going to have a baby sister. I remember planning to have tea parties with her and teach her how to sing and to read into walk and into talk and I remember, I was finally going to have the perfect girl playmate and she could dress up with me. And that was something that Magnus could do but he just couldn't do it in the same way that a sister could. And I was just so thrilled I was going to have like a little, a little version of me that I could take under my wings.
Liesel Mertes
So do you remember finding out or what it was like to find out that it was not all going to be as you expected?
Ada Mertes
I think I was I was kind of shocked, but I think I also was kind of in denial a little bit. I thought, you know things are gonna be OK and I held onto that hope for so long that things were gonna be OK and that everything was gonna work out in the end like a fairy tale kind of and things didn't work out that way.
- Liesel Mertes
Yeah, tell us a little bit more so when she was born.
- Ada Mertes
She, she had a lot of problems, not only she had a hole the back of her skull and she also had some problems with her spine. And so she stayed in the hospital for several days and we came and visited her a lot and she had to be hooked up to a machine. Then you decided to take, you and Daddy decided to take her off of the machine and you brought her home. Well, actually to my grandmother's house but to home and that was she lived for a few days and then she died there.
Liesel Mertes
What was it like being 3 and having a sister die?
Ada Mertes
Well I remember it was I it was kind of hard because in all of the stories that I've read there were fairy tales they used to read me and the Bible stories and they would go through hard stuff but in the end everything would work out. And I think I had my fingers crossed in a way and I was just hoping things are gonna work out. I would tell myself, you know don't worry, we'll overcome these things just like you know, Robin Hood and all of these these characters that had been some my best friends when I was little and I like, till the very end, I just hoped you know things can still work out. There's there's this magical way to save her and it's it's there.
Liesel Mertes
The hope that everything will work out in the end. I want to interject a memory here, the recollection of the awful moment when we told Ada that Mercy had died. We were sitting in the basement, Mercy’s small body in my arms. And I told Ada, your sister is dead. Ada was perplexed, after all, her sister was there, in the house, no longer at the hospital. “She’s not dead, she’s home.” “No,” I replied, “she doesn’t have any more breath.” I could see her mind working, “Then I will get her breath” Ada declared, coming over to give Mercy her breath. She continued, with a hint of desperation, “I will feed her.” “No,” I reply, “she is dead”. There it is, that magical hope that the much loved sister would somehow be saved.
Liesel Mertes
What do you remember of what it was like after she died?
Ada Mertes
At It, I think it did affect me a lot. Even today, like the way that I talk and just act is affected by that. But then I remember I was told after this, like a few years ago, that at the playground sometimes I would pretend that I had a pretend sister and I'd play with her, it affected my play and just everything about me. I don't think, like, I don't know if I really understood what was going on. But the loss was definitely rooted within me.
Liesel Mertes
Indeed, the loss rooted down deeply. This is an excerpt from my journal, just a few weeks after Mercy died:
In the mornings, before we are out of bed, Ada June often arrives with requests for milk, snuggle bugs, and changed diapers. She will snuggle in between the sheets with us to chat and squirm before the day and her brother fully awaken. Lately, we have been playing “Baby Mercy”. Ada lays in her diaper, because babies come out “naked and slimy”. For the first few times, we would play overshadowed by the reality of Mercy’s death. I am designated to be Ada, and I would stroke her face lovingly, telling her how glad I was to have Mercy and how sad I would be once she left for heaven. However, the game has taken a different, more painfully reflective turn. Baby Mercy (aka Ada), now declares that “I am going to stay with you! I am going to grow up!” We then play that Mercy dresses up with Ada, they play games, they eat together, and do all of the things that sisters who have years together will do…all of the things that will never be for Ada and Mercy. A dull ache.
Liesel Mertes
How did it make you feel about, an apprehension about death of other people in your life?
Ada Mertes
I think it was definitely a lot more a lot more paranoid and scared because this thing was like something that had been talked about, death. But after she died, it became like a real thing to me, it became like something that could actually happen. It wasn't just something in the distant future. It was something that was here and now and a reality in such a very different way. And I think I definitely I worried a lot more about it.
- Liesel Mertes
Tell us a little bit more about that worry.
Ada Mertes
I think not only was I worried that like my grandparents, my parents were going to die, because I knew it could be something so unexpected, but I think I was also worried that I was going to die in a different sort of way. And like, just, I kind of, I was a lot more aware that there was like a true, sad, very sad reality to that.
Liesel Mertes
Was that worry something that was just inside of you? Or did it come out in different ways?
Ada Mertes
I remember telling you and Daddy when I was younger that I was afraid that my grandparents were going to die or that you were going to die or that I was going to die. I was afraid because it was, now something that was going to forever be a part of my life. And it's, it's something that actually really stays with you. Not like the fear but just like the feeling of loss. And there's always a slight feeling of, there's always something that's never going to be perfectly right because you know, something, a part of everything's not there.
Liesel Mertes
Was there anything that was helpful for you when you were feeling like that?
Ada Mertes
So, the thing about it is it always stays with you. The sadness and a lot of times when I was younger, I didn't know just ways to get my mind off of it. Like I remember making play dough with you or just like being able to try to be a child again in a different sort of way. Not having to think about that. And as I got older, when I would feel sad about it, just having someone to talk to, one of my best friends, like I could just tell them, you know, I'm feeling sad about Mercy today and they, they remembered and they're like, Yeah, I know that that must really be sad. And they were just able to say that it really, it really hurts when people don't remember when, like, say like I'm feeling sad about Mercy, you could say that to someone and they're like, who? And you have to explain over and over again and you've explained it to this person several times before but they just don't remember, yeah.
Liesel Mertes
Tell me, tell me more. Was there anything that people did that was particularly unhelpful or hurtful?
Ada Mertes
I remember once I was writing a story about Mercy and I was particularly, particularly, particularly sad that day and I was telling them, like, I'm, I'm so sad about my sister and what they said to me in response was, "Well, you know, my my sister, she once fell and she split her chin open and she had to get stitches. So you know what happened to you was not that bad." And that just, like it really hurt because she's comparing her sister having to get stitches to my sister who died when I was 3 years old. And it just felt like she didn't even care, that all she cared about was like her pain and that she didn't really even like acknowledge any of what I was going through.
Liesel Mertes
On the other side, are there things that people have done that have been really helpful for you?
Ada Mertes
Like I said, just people being able to remember or if like, sometimes I'll be not able to focus, especially like on a day that's like her birthday or and the day she died. Or just like, just I'm feeling sad one day and I can tell my teachers sometimes like it's kind of hard for me to focus, like today was Mercy's birthday or something like that and just saying Yeah that's OK, I understand. Just having people to talk to and be able for people to understand how I'm feeling is really, really helpful.
Liesel Mertes
And I'm struck that, you know, you're talking about that sense of apprehension or wondering could this happen to me. Could this happen to someone else? You did have another disruptive life event that came with your brother Moses. Tell us a little bit more about that.
Ada Mertes
Moses was born with a heart defect. He was born without one of the valves in his heart. And so he's had to have numerous open heart surgeries and just heart surgeries over the past five years. I think four or five of them and they've been very serious procedures and I think the first one was the case. I'm 11, now five years ago, I was seven or eight. Probably something like. So yeah, that was, that was hard too because I'd already had a sibling die and of a birth defect too. And it was definitely very worrisome. Is, is this going to happen again? Is this going to to be the same all over again?
Liesel Mertes
What do you think are things that grownups misunderstand about kids and their grief or sadness?
[00:11:52.910] -
Sometimes kids don't actually, like for me, I'm very verbal, so I like talking about it but sometimes kids just don't want to talk about it and I feel, like, sometimes people are led into having, like making kids talk about it, like, oh how are you feeling? Are you okay? And like, saying, like that sometimes kids don't want to talk about it. Maybe they just, like want a hug or say, I'm feeling sad and they don't like, want to be pushed into talking about it. Or sometimes kids say, there's a lot of stuff that happens at school and it's just like, so much stress sometimes. And with all of that, it's sometimes, it can be too much and sometimes when they are asking like, hey it can be hard to like have the courage to go up and ask, Hey could I just like have some time off to just be quiet and read or like yeah, I can't really focus today. Is there anything that I could just like do. You know, sometimes it can be hard to have that courage but. And then, if adults are like, well and then they can just, it can kind of feel like they're judging you because of that but it just can be really hard to focus when you have other things on your mind and your mind can be swirling all around, you can't focus.
Liesel Mertes
What is helpful for you when you want to be able to focus or deal with some of those emotions?
Ada Mertes
Well sometimes I listen to music that really helps. And I can't sometimes. Just talking to people not even about it, just like making conversation with others can really help. Or just being able to read a book or take a nap can really help. But sometimes it's hard to like do that within the chaos of everything that goes on in our everyday lives. And it's really good to take the time to do that when you feel like, Oh I'm feeling really sad or really stressed about this. I want to be able to have self care and that's something that people can really struggle with because they're like, but I have to do this so that they can't. Sometimes they don't understand their own emotions. But what really helps is just to take a moment to say, what can I do to help myself feel better? And then maybe be a self advocate for yourself. Ask an adult and if they they don't help you, then ask another adult. You need to be able to advocate for yourself when you're feeling sad like that you.
Liesel Mertes
Do you have any, those were some great words of insight for people who are going through something similar, but as you think about, if there's anyone listening who has a child who is going through grief or who is a child going through a disruptive life event, what words of insight would you offer to someone in that situation?
Ada Mertes
What I would say to the children is, it's not your fault and it's OK. You are, you're always still loved by God. And no matter what happens, God is always going to love you and your parents are always going to love you and just keep believing in the power of hope. Things can feel really, really hard at times, but just keep, keep believing that things can get better and just, if there's a time where you're just feeling super overwhelmed and you can't get this sad thing out of your mind, be able to self advocate for yourself or just be able to say, you know what I'm going to take a break from this homework, it's really stressful and I'm really, I can't focus on this because of something else and I'm gonna go and take a nap where I'm going to go and take a walk or go for a run. Be able to be vulnerable. Sometimes to be able to tell people, I'm feeling really sad because sometimes that really, really helps to be able to, to let people know that you're feeling. And for parents, I'd say just be able to to give support. And you don't always have to bring it up. Sometimes that can be hard to talk about, but be able to, be able to find fun things for you and your child to like, say look, let's go on a bike ride.
Ada Mertes
You know it doesn't have to be something big. It can just be like going for a bike ride or reading a story together because sometimes those are the most meaningful moments, just being able to sit down take a break from all the busyness or all the, the grief and everything that's going on, just being able to do what you did before everything happened. Being able to just be a child in a different sort of way.
Liesel Mertes
You, you spoke about that feeling of feeling overwhelmed or for a child who might be listening to that. Could you tell us a little bit, could you describe like what that feels like inside of you when you know that that is coming or when you're in the midst of it?
Ada Mertes
Sometimes it can be just like you just can't focus. You're like working on a math sheet and it should be super easy. It's something you know or you're, you're reading a book but these thoughts just keep nagging at you like, Oh I'm so sad that my moms have has cancer or I just my siblings really sick right now. I I'm really worried. I can't, I don't know what to do. It can feel like that. It can also be like, it can just be like, I can't take it anymore. I don't know what to do. And sometimes, it can just be like you can't, you just can't think about anything. Your brain's overloaded.
Ada Mertes
You really don't know what to do and in that moment I'd say, like talk to me and I'll ask them like I want I can't, I don't know what to do. And I'm really, really stressed and I'm really, really sad. Is there anything that you know to do or you could ask like, can I just have a break from whatever you're doing or could I just like go and ride my bike. Or, if you're doing homework, like can I read a book or listen to an audio book or something.
Liesel Mertes
Have you needed to take time like that. I'm struck that you have been in school like on days when Moses is having surgery, have you needed to take moments like that in a day?
Ada Mertes
There was one time where I was doing math in class but I just could not focus on it. It was I think it was Mercy's birthday and I just couldn't focus. I was really, really sad and I just I went to my teacher and I said, "Mrs. Wilson, I really, I can't focus today was my dead sister's birthday. Do you mind if I just take a break from math for a little while?" and she said, "Sure Ada, that, you can totally do that," And just being able to be vulnerable is really, really helpful. Or sometimes on days where Moses is having surgery, I can go down and talk to the school counselors or just like play a game with them and be like, you know, Yeah he's having surgery today think thanks for caring about that. Thanks for noticing. Thanks for being there.
Liesel Mertes
I'm so glad that you've had adults that have been able to be there for you like that. Is there anything else that you have not gotten a chance to say, whether it's a story or something that you thought of? And we can edit it and put it in a certain point.
Ada Mertes
Well just like I said before, just being able to remember people's grief is really, really important because if you forget, it can feel really really sad to the other person. I know many people have forgotten about Moses his condition or about Mercy. And I've explained it to them, like I've lost count, I've explained it to them so, so many times and they always say, oh I'm sorry, but I never say any more about it. And then I talk. I try to talk to them about it, hoping they'll remember because I've told them so many times but they they never do.
Ada Mertes
And it feels like, in the in the hubbub of and the busyness of all of our days, remembering something that's kind of insignificant that doesn't affect us. But you know, really is important to your friend, being able to remember that, in being able to acknowledge that throughout your life daily basis on a daily basis is really, really, really, really helpful. It really, really makes me feel supported and loved when people can remember that.
Ada Mertes
And I really just remember, remember when someone's going through a hard thing. Remember and be able to say, like, hey are you OK? I know, I know that what you're going through is hard. And if they say, yeah, then you don't have to bring it up but if they say, no, I'm actually feeling really, really sad and you can ask them if they want to talk about it and just be able to be there and remember don't forget because they feel like that's the worst thing it can do.
Liesel Mertes
I'm struck with one more thing that you talked about as I was thinking, you know, for kids who are experiencing disruptive life events, oftentimes their parents are also going through disruptive life events. What is it like being a kid watching your parent go through something hard?
Ada Mertes
It can, it can be kind of scary. And also really sad because you see parents vulnerable and they're supposed to be the ones taking care of you. I'd say that sometimes, if you see your parent being vulnerable, maybe not in the moment but a little later, be supportive of them supportive of them too. You can have the entire family can help. They can support each other and be able to build each other up, give each other just encouragement throughout the day. Pray for each other be able to be there for each other. Can really help to have a safe family and a safe school and workplace can really help.
Ada Mertes
Just be able to remember and be able to support your family. And like, if your entire family is going through something, be able to be vulnerable with them because they, they probably know how you feel more than anyone. Also be able to be someone in your family who can be able to be like a bright shining candle in your family in a moment of darkness, when your siblings are stressed and you're having a fight with them. Just don't get angry because there's more going on. Be able to just give them a little bit of, a little bit of leeway or make your parents coffee in the morning or just be able be able to be there for, not only your family but your friends when they're going through something and be able to be vulnerable. Sometimes that's what you need.
Ada Mertes
You need to self advocate sometimes and then other times be able to know what you need and just be able to take that time to talk. Maybe it's you just need a good cry. Sometimes you just need to cry and when that happens, just be able to give yourself that chance because nobody's going to judge you; they don't, they don't know what you're going through in the same sort of way. And sometimes you really, really just need to be able to give yourself that.
Liesel Mertes
Thank you Miss Ada June Mertes for joining us.
Ada Mertes
Thank you.
MUSICAL TRANSITION
Here are three closing thoughts from my interview with my daughter, Ada June Mertes.
- It is meaningful to remember with someone that is grieving. Ada talked about the pain of having to explain, again and again, about Mercy’s death or Moses’ surgeries. As you remember with a child, resist the urge to make comparisons or rush them too quickly to a resolution.
- It is OK to cry, it is OK to be fragile, it is OK to need a hug, even years after the death or the diagnosis. There is no set timeline for grief.
- Kids (and grown-ups), learn, in the words of Ada, to self-advocate. Are you feeling overwhelmed? Let someone know. Would you benefit from a break from your homework or class? Let someone know. Do you need a hug or a kind word, don’t be afraid to ask. There are people who can and will help you. And to all of the school guidance counselors and teachers and bus drivers that have cared well for my children over these tear-stained years, let me take a moment to say thank you. Thank you for making the space for my children to hold their grief instead of hide from it.
OUTRO