A life filled with suffering isn’t worth living. That’s what we’re told, right? That ending a life is a compassionate choice. As the Netherlands expand their program of euthanasia for children, we need to explore these assumptions that it’s okay to let suffering have the last word.
In this episode, author and speaker Mary Lenaburg shares her experience caring for her severely disable daughter Courtney, and what over 20 years of accompanying her taught her about bearing her cross with joy.
Guests appearing in the episode:
Mary Lenaburg
Mary Lenaburg is a writer, speaker, wife and mother sharing her witness and testimony to groups of all ages about God’s Redeeming love and that faith is the courage to want what God wants for us, even if we cannot see where the path leads. Acceptance + Trust = Unimaginable Joy. Mary is the author of the award-winning book “Be Brave in the Scared: How I Learned to Trust God During my Most Difficult Days” published by Ave Maria Press. She and her husband have been happily married for 32 year, finding joy among the ashes having lost their disabled daughter Courtney in 2014. They live in Northern Virginia with their grown son Jonathan. She continues to embrace her father’s advice: “Never quit, never give up, never lose your faith. It’s the one reason you walk this earth. For God chose this time and place just for you, so make the most of it.” You can find Mary at www.marylenaburg.com.
Transcript
Mary Lenaburg has lived two different lives, lives that couldn't be more different from each other as an award-winning author and a highly sought after Speaker, Mary has achieved critical acclaim, traveled the country to share her story and on top of all that is as wise and warm a human being. As I've ever had the pleasure to meet. But this wasn't always Mary's life. For many years, Mary was a struggling young mom, grasping for answers, hanging on to hope by her finger. Yes. Her life was mundane, hidden. She did nothing so glamorous as to win awards. Back then, Mary's reward for a job well done was to see the sunrise coming up over the horizon. Knowing her daughter, Courtney had made it through another night. It's Courtney's story, really that we'll hear today. It's been interested to her mother, like Aaron, for Moses, to speak on her behalf. Courtney, in 22 years of life, never uttered a word. It started on the day of her baptism. In six weeks, Courtney was a typically developing newborn. The moment the water hit her head, though, something started to happen. Her back arched, her body jerked. She was crying. They thought it was because the water was cold. So Mary nursed Courtney. She calmed down. They finished the baptism. But then it happened again, and this time when Mary nursed Courtney, it didn't stop. On top of all.
That.
She couldn't unlatch. She was frozen there. And so that is how they rode to and arrived at the hospital, Mary holding Courtney in her arms, still latched. Mary doesn't remember much of the ER, visit the INS and outs of hospital visits would come to be commonplace for their family. Eventually, Courtney was diagnosed with a seizure disorder and they spent the next several months searching for answers.
Yes.
Finally, when Courtney was nine months old, they found one, an injectable steroid with a pretty good track record. No known side effects looked to be about 70% effective in curing these children of all their seizures. Mary called round and talked to families who'd given their children the drug families of the 70% raved and the others didn't have anything bad to say. It just hadn't worked for them. It was a no brainer. As straightforward as medical treatments can get. Except. In Courtney's case, it wasn't. Despite all the testing they've done in advance to ensure that Courtney's system would tolerate the drug well. On day three of her treatment, she had an allergic reaction to the medication, and I don't just mean hives. She stopped breathing. Her brain swelled, her kidneys shut down. She was septic. Courtney recovered from the incident. Needless to say, the drug was not an option for treating her seizure disorder, and she continued to have seizures over the course of her life. The drug had not helped Courtney, but the allergic reaction had permanent effects, as they would later come to discover the pressure from her brain swelling had damaged her cortical nerve. Courtney was blind and her development stopped that day. For the next 20 years, Courtney functioned at the developmental level of a nine month old. And so, as a mom who made what seemed a straightforward medical decision in the best interests of her baby girl, Mary knows better than most about the power of medicine and the unintended consequences it can have. She also knows intimately what it's like to suffer, to be angry with God, to question God, to hold on to pain and regret, and also what it's like to surrender to God in that suffering, to offer it to him, and to let herself be transformed by the sacrifice of her life. Mary's life of Hidden holiness was quite the journey, and it isn't so hidden any more. As a writer and speaker, she shares her family's life with Courtney in all its struggle and all the beauty God has brought out of it. I sat down to talk with Mary to hear her story. Much of the controversy we hear in the news, the tensions between religious and secular impulses surrounding them, they come down to fundamental beliefs about the value of human life and the nature of suffering. Is there ever suffering so great that it makes life not worth living? The Christian answer is of course no, and we could spend all day defending that answer and the defense could be eloquent and well researched. It could even be compelling. But at the end of the day, it isn't an argument we need to get us through suffering. What we need is hope. I'm Samantha Stephenson and this is brave new. US.
The message that we might be communicating is that we wouldn't want them around if we could have prevented them, we. Would.
Have we don't talk about a pencil and say, well, it's inherently good or it's inherently evil.
We all are given this gift of suffering. This moment where God is asking us to walk closer with him, to cling to the.
Cross it's pain and it's. None of us get out of it that. We're at a point where we're trying to get to a perfect generation.
And an insane amount of pressure on people to earn or.
Deserve their place.
We're dealing with not simply shaping a life, but actually shaping the person.
We have the power to change our genetics. But should we? And how might using this power change? Who we really are. This is bioethics in. The light of. Faith, welcome to Season 1 with Brave new US.
I'm a mom. I wanted to fix her. So for the first seven years of her life, I received that diagnosis and I still went about fixing. I went to every physician I went to, every homeopathic physician, osteoporosis in different therapies, different medications. Different supplements we went to everything to try and maximize. Things the life that she would have, you know, was it possible for her to walk? Was it possible for her to communicate with us because she was nonverbal? She was non ambulatory. What could we do to help her have the best life she could have? So in the beginning it was very touchy and people would just put. Have you tried this or have you tried that or have you tried this? It's kind of like when you go online these days and you say. I'm starting this great diet with, you know, let's say Paleo for example. I'm starting the Paleo diet numbers that you do. To do that, it does this, this and this. Let me tell you my experience and that's what it was like. So I just kind of got really used to the bombardment of questions. And in the end my answer was always the same. We're doing the best we can. Thank you for caring. But we're doing the best we can. And then you had to deal with the guilt on top of that, that it was. Jerry and I made the decision to give her the medication. We have no idea what would have happened without that medication. I don't know what kind of life she would have had, and that was, I think, harder than anything else because we felt we damaged our daughter. You know, we we thought we had made a good decision and we did. I mean what we did, you know, we made the best decision we could with the information we had at that time. And I have to be honest, it took many years. Of therapy, of prayer, of just sitting with it, and and loving her. But I think I would make the same. I know I know for a fact. I would make the same decision today because it was the best information we had and we just wanted her to be free of pain. And instead what God allowed was a life of pain. And I don't understand the why of that. I won't until I need him. But I know without a fact, without a doubt. Pardon me for a fact that. Jerry and I and Jonathan, we are the people we are because of Courtney and our experience of loving her and caring for her. And she had everything she needed to do the job sent. God sent her here to do. Everything she need. From the day she was born to the day that that happened, and after she had everything she needed to show us how to love and to do what God asked her to do. And so she did it. And she did it beautifully. And she did it within a lot of restriction and a lot of humility and a lot of pain. And I I think back in that time and I feel sometimes like I'm challenged in my day now, you know, it's been 5 1/2 years without her. This is not challenging. This is just me getting in my own way, you know. And then I think back and I go wait a minute. You were in the pediatric intensive Care Unit 2 to 3 * a year with different things. You never knew if. You know, 1 seizure was going to. Take her out. When she would go into a full blown seizure and stop breathing, you just didn't know. If that. Was the last one, and we lived that way every day, 24 hours a day for 20. Two years.
It sounds overwhelming. To live every day with that level of intensive focus on the well-being of another with that level of uncertainty governing your day. It's not, I think, something many people would choose for themselves. Then again, if the way to find yourself is really giving yourself to another, what better path could there be? And Mary, she has learned so much from life with Courtney.
She taught us a couple of things, very profound things. The first is to remain in the present moment, the sacrament of the present moment is what we used to call it. You didn't plan with Courtney? You didn't think till tomorrow. A lot of the times you didn't think till dinner time. You literally loved moment to moment to moment. And I missed that I missed that reminder that I have not been given tomorrow. I've only been given the now, and God has asked me to live boldly and love boldly. And the now he hasn't given me. Tomorrow I have not received that gift and yesterday is gone and I can't. You know, I have to leave that to his mercy and his. Redemption. So she taught us to remain in the present moment. She taught us to love with our lives. And what I mean by that is everything with Courtney had to be done for her, right? She couldn't bathe herself. She couldn't brush her own teeth. She couldn't feed herself, dress herself. Everything was a very physical existence. And this was a child who, when she passed away, was 5/8 and at her heaviest weighed about 135 lbs. So I'm lifting that I'm trying to maneuver these beautiful long legs, you know, and and get her into the clothing and out of the clothing and bathing her and caring for her and her her back. She had severe scoliosis. Her back looks like an upside down question mark, so it it put a lot of pressure on her lower extremities and her hips and. Uterus, tummy, gastrointestinal issues. So you know, there was a lot of things required, you know, massages and therapy and stretches and things of that nature to help her be more comfortable. So we loved physically with our whole bodies and when she would have a seizure, it was a whole body seizure. And so my prayer in those moments would be Lord, if this is the last moment I have to hold. Her. May I know that it's the last moment, you know, let me say all that I need to say. Let me reassure her that she's OK and that when she is done here, she is going to be with you. Let me assure Jonathan that we're going to be fine. You know, we had to leave parties. We had to leave church. We had to protect her. Environment. I mean it was just everything was very physically oriented. The wheelchair van, you know, where we could go, where we couldn't go. It was just a very different way of living. So I I say we lived with our whole life and with our whole body. It really was a very physical way of serving. It reminds me a lot of Mother Teresa. In the streets. Of Calcutta, you know, with the with the man, the homeless man. Why are you doing this? He just was laying there in the gutter and he was only with her for two or three breaths as she was cleaning him. And she just said I need you to know, you know. God loves you when he sees you. And she brought him back to the house and she he died that day. But his last moments on Earth were one of tenderness and kindness and dignity, and that became paramount to us that she knew she was loved. She was cared for as she was. So the world knew she was loved and that her dignity was protected at every moment of every day. So we lived in the present moment we loved with our entire lives. And we believed in miracles. She taught us to believe in miracles as simplicity of miracles, and I think people forget that. It is a miracle that you and I are talking right now over the Internet. It's a miracle people call it technology, but it's a miracle because somebody was inspired at some point along the way by our Lord Jesus to invent things and to do things. And now I get to talk to you literally across the United States, as if you're sitting in the same room with me. That's a miracle. You know, it was a miracle that she woke up in the morning. It's a miracle I wake up in the morning. It's a miracle that, you know, I get to go to sleep at night in a home, in clean sheets. And there's food in my refrigerator. Yes, I work for those things. But God has also allowed them to happen in my life. And so we looked to the simple miracles. When Courtney would laugh when she would look toward you, when you were talking like she never really made eye contact with you, but she would turn her head towards you. When Jerry would come home from work and he'd say, hey, pickle, we used to call her pickle because she could be a sweet pickle or a sour pickle, depending on her mood. And so whenever Daddy would come home and would would speak, she would turn toward him and smile. Her face would beam when Jonathan would read a book to her, she would lean in and put her head on his shoulder. These were miraculous things that showed us. She heard us. She knew us, she loved us. And she never, ever spoke a word. I mean, there were so many miracles she would bring people to their knees to pray. Just because they were drawn to her story just because they were drawn to her, so simple miracles of just day-to-day living and the final thing she taught us, was to accept suffering and to accept it in a way that we offer it back as redemptive suffering. Courtney. Showed us that we all are given this gift of suffering. This moment where God is asking us to walk closer with him, to cling to the cross, to take 1 little sliver of the cross. And hold it deep in our hearts. It's painful. It's hard, but when we offer it back to the Lord as gift, when we offer it to him. And thanks giving for what has been done for. Us. And sometimes we name it like Lord, I'm going to offer this cross for Courtney. I'm going to offer this cross for Jonathan. I'm going to offer this cross for. Our pastor for the lady across the street, who's battling cancer when we name it, there's a redemptive quality for it. I I liken it to labor. You know, if if you've had the privilege and blessing of giving birth to a child, you go through.
Her.
It hurts. It's painful. It takes everything out of you. It is completely depleting. But it is powerful because at the end, you know you are working toward holding this new life, holding this child. Sometimes it doesn't work out that way, and the pain is immense and the suffering is even. Worse. But it's still redemptive because we're loving through our suffering. We're loving our Lord through our suffering, just like he loved us. God will never ask you to do something that he did. Not do first. And he died on the cross for me. And he died on the cross for my daughter. And so he's gonna he's gonna ask from time to time that we take this relationship with him, this gift of our faith. And we go deeper and it's going to get harder and you know people are my husband and I talk about this all the time. People ask us. You know well, you've suffered enough. You know, they say, do you think God will ask more of you? Yeah. Yeah, I do. That's not the worst suffering we will ever undertake. I have no doubt about that. And and it's I don't anticipate it. I just know it to be true. And therefore when it comes, I rely on the Lord to let me know. OK, Mary, This Is Us. This is you and me taking a little deeper walk. And then we'll do what he asked us to do, but we learn to accept suffering and to accept it with joy. Because you can't have Easter Sunday without Good Friday, you can't have Our Lady of victory. Without Our Lady of Sorrows. You you have to walk through the cross in order to get to the good part. There's going to be many, many crosses throughout our lives. Some are going to be really, really heavy. Some are going to be a little lighter. But suffering will come to us all. It's biblical. It's in the acts of the apostles. It's in that book of the Bible. And they say suffering. Prepare yourselves for suffering and tribulation. Because you're not in heaven yet. You're not there. We're still working. And so those four are four of the greatest lessons. And I would say if I had to add another one, it would be to pray boldly. To live with hope. Because when you have hope, you have joy and we always knew that God could heal Courtney. We always knew it. We didn't know what it would look like. We didn't know. It would sound like we didn't know what it feel like, but we knew he was going to heal. And for our journey, it wasn't here on Earth. That's not what it was. In his plan, her healing happened the moment she took her last breath here, and she met him. Ran into his arms and said I'm home. He did it. He did it. You know, and so do I lose hope because my daughter is dead. No, I gain hope because my daughter is dead. Because I know where she is. You know, I know that she is interceding for me every single day. I know that I did my best and my weakness and in my fault and in my sin and in my selfishness, I still did my best as her mother to love her and to get her to. 7. And that's all I can do. It's all we can do for any of our children.
Courtney taught her family profound lessons, and they are, as Mary said, who they are. Because of these lessons that they learned by being Courtney's family. They were made for each other and for Mary Courtney's legacy doesn't end there. It doesn't end with the way that she's transformed her family. Mary and her family feel a profound call on behalf of other people like Courtney. To go out to stand up, to speak out.
We raise our. Flag and we go out and we defend the dignity of the defenseless. We go out and we speak to a world that looks at Courtney as if she were a burden, as if she were useless, as if she were nothing but a drain on society. And we speak the truth. That God doesn't make mistakes. She's perfect in every way, and she just looks like the rest of us inside out. All of us have different abilities and disabilities. You could see courtneys. You and I spend our entire lives trying to hide. Ours. And so we're all disabled. We are all differently. Disabled people. But we all have all been given. What we need to do the job that is uniquely ours to do so anybody that says I can't do it, I don't have the faith to do it. I don't have the strength to do it. No, that's a cop out. You pray for the faith, you pray for an act of faith. You pray for a looming faith, a faith that gets actively gets things done. You pray for zeal, you pray for fortitude and forbearance, and you pray for perseverance and humility and consistency and charity. And you just do your best.
Best.
But we can't quit. We can't quit on God because he never wants quit on us. We can't stop loving. We can't stop caring. You know, we need to stop judging. We could remove that one from our from our daily lives. We have to meet each other. Empathy to empathy, heart to heart. And in this world. Today, we're not meeting each other that way. It's not happening. You know, we're meeting each other with judgment. We're meeting each other with harshness. We're meeting each other with. What can you do for me? We are no longer who God made us to be. We are what we do. Courtney couldn't do anything, so by those standards her life was meaningless. And I argued that her life had tremendous meaning. And tremendous value because God chose. That life for her. You know, he gave us free will. We made decisions and he took the ashes of those choices. And he made something beautiful out of it. You know, Courtney lived out Romans 828. All things work together for the good of those who love the Lord.
When I asked Mary her thoughts on genetic editing, I'm not sure what she'll say. I imagine the young mom she described clinging to any shred of hope for her daughter's recovery being drawn in to the promise of a solution at a genetic level. But then? It's also impossible not to be drawn into the beauty of her story, to see what God has brought out of their family struggles. And not that we would ever be justified in causing harm for a good outcome. But God, who, unlike us, sees reality in all its nuance and all its ripples throughout eternity. Maybe the lesson here is that we trust him. We trust him when he allows the devastating to happen, because we believe that the vision he has for us is beyond what we see in the head. And now would marry as someone who's been called to live out this kind of radical trust in the goodness of God in a much more dramatic ways than I have. How would she see it?
If I were a young mom today and all of this was happening and the doctor could say we could manipulate this or that. That would be really tempting. That would be really tempting, but we have to remember that God is God and we are not. And there are things put in place and there are things that are loud that are beyond our understanding. They are a mystery to us, but I really cling to the idea that God makes good from bad. He will take the worst of the worst. And he will bring glory from. And that has been our story, would I today say yes to genetic manipulation? No, I would not. I would not. Because you're playing God. You're talking about life. You're talking about the very essence of humanity. You know of why God created us out of love. You know, so that we could love, we create us in love, for love to love. And things happen. Nature happens, bad things happen. But. If it's going to hurt. And it's going to come against what I believe if there's going to be some ethical question that stands in that Gray area, then no, I I cannot. Be a part. Of it, I know that even more now, having walked through it. If I were that young mom, I was really mad at God for a long time. And I probably could have easily been so. Paid. Had I not had the experience of already harming her, you know, had I not walked through that, you know, think of that we were given nobody said No 15 families. No, it didn't stop the seizures. But nobody had had our experience. And what we came to understand about our daughter is that there's about 2% of the popular. Notion that when you give them a medication or you do a treatment, they're always going to fall into it. Didn't work and bad things happen. That was Courtney. She was literally in that 2%. She was allergic to billions of things that we found out you couldn't do what you could do what you and I, the medications we could take. It couldn't take. It was crazy town, but that's where you know, God created her to be that way. There was nothing I did to change that. So that's where that surrender and that acceptance and taking a different path. You know? It's that very famous poem you've come to the fork in the road. And we took the path less traveled and and I don't regret it. I don't regret that path. I know that on December 22nd at 1:51 AM in the morning when she took her last breath in my arms, I had done everything I had done. Everything ethically, spiritually. Physically, medically possible to give her the very best life we could, and that was a privilege to be able to. For that I mean that took hundreds of thousands of dollars of debt. It took me walking away from any kind of career to be home and be your caregiver. It took Jonathan dealing with his own traumas throughout his life because his sister would stop breathing at the drop of a hat. It took my husband leaving the Navy because we couldn't be in that lifestyle and care for her. Properly without our marriage imploding, or one of us, you know, having a stroke from the stress, I mean, there were a lot of heavy, heavy decisions that had to be made. And we had the privilege of a stable income and we worked at our marriage. And as I've written before, our marriage was imploding, you know, 80% of all those families that have a child with the disability and in divorce. The stress is so much because it's messy and it's hard, and when you stop surrendering and you stop giving in to. If you stop hoping. You're dead in the water. You're given to despair. It's a it's a hell of a lie. And I did that once or twice in the beginning, especially, and it's a dark, dark place to be. It's a dark place to be. So with science comes responsibility. We are not God. And he allows what he allows for a purpose that goes beyond our understanding. And that is where faith meets. Medicine. It's where faith meets ethics. You know it's that whole idea of death with dignity. There is dignity and death when you're loved and the messy and in the hard. When the touch from the nurses, gentle and caring when the family member is praying, when you're not alone, there is dignity. In that moment, there is love in that moment. And that's what God is asking us to do. But with our disabled community, he's asking us to do it now. In the everyday life. You know, he's asking you to go to your neighbor whose child has autism. You know, and give her 30 minutes where you can be with the child doing whatever it is they love to do. And the mom could have a hot cup of coffee. And not a cold cup of coffee. You know where somebody sees them in their pain and somebody sees them in their struggle. So much of our life today is online, and we're we're missing these personal connections because personal connection is messy. And we're not always going to agree, and our lives are messy in their heart. But if we don't get down into the digging of it into the into the messy and into The Dirty and into the question of can I do this medical treatment? Is this ethical for me? Is this ethical for our planet? Is it ethical for our medical community? You know we have, we have designer babies. What the heck is that? You know, talk about playing God. And what about all of those other lives that are sitting in Petri dishes that have been made? You know, I that's life. That could be somebody who's going to solve the whole cancer problem. That could be a soul. That's that's going to be the next Pope that's going to be a St. in some way or change our world. And you're just discarding them because you call them medical waste. There was nothing about my daughter that was wasteful. There was nothing about our life that was wasteful. It was beautiful and it was hard. We used to call it beautiful. Because it was burdening and it was hard. But it was life and you only get one. So you better give it your best shot and fight hard. When you start messing around like with designer babies and and genetic manipulation, what you're saying to God is you're not good enough. What you gave me isn't good enough. It's not what I want, and therefore I'm going to take what I want to love another as God has loved us to love another, as God has loved us means. I receive what you are able to give.
As someone who's faced the rawness of these issues, Mary knows with very deep compassion what the demands of these kinds of diagnosis are, and so. Still. Mary would choose to live it all over again. She sees something sacred in the way God has formed each of us. Even if we don't quite see its value. God, she insists, creates with a purpose and people like her daughter. They have worth and purpose and value, exactly as they are. What needs fixing isn't our limitedness, but rather our sinfulness that is common to us. And having limits embracing our limits, embracing others and their own limitations. All of it is a gift, a gift mysteriously bound up in the greater mystery of life and its greatest mystery. The mystery of love.
So.
What have we learned this season? Do we know enough to make decisions about the ethics of genetic editing? Where does all of this lead us?
Well.
Join me next time for the conclusion of season 1 of brave new US.
You well. All will be well, will be well and I will be well, I will be well and I will be well and I will be will.
This episode of Brave New Less is produced by me, Samantha Stephenson. Special thanks to Mackenzie Kim, Lauren Klingman, and Jessica Gearhart, can find Jessica at the link in our show notes. You can also find the link to see all of the great benefits like extra content, the ability to vote on topics for future seasons, your support for the podcast, your sharing. It helps us get the word out. We're expanding the culture of life one episode at a time. God bless you and thank you.
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