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In this interview, I was moved to tears more than once because of the story of Marie and her children. She is an incredible woman who clearly loves the Lord and is such a force for good even in the face of suffering.
This is an extremely inspiring chat with Marie Wood, who is raising 5 children (a basketball team, according to her!) with her husband, David Wood–the very famous Apologist. Two of their sons, Reid and Paley, both have a rare, life-threatening condition called myotubular myopathy. It’s so rare that it only affects 1 in 50,000 male live births. It causes problems with muscle tone and dangerously affects muscles that control necessary functions like breathing and swallowing.
I know if you listen to this conversation you’ll come away in awe that our God can even raise the dead in this day and age! I’m amazed and I pray this will be an empowering and affirming message for you as well.
Marie serves as vice president for a non-profit organization to connect people affected by myotubular myopathy. You can find out more about the non-profit that connects families here at: www.mtm-cnm.org
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Also, if you’d like a free 1:1 Clarity Call with Belah — a $500 value! She is offering that free to her audience–men or women. Here you will get insights into what’s blocking you from incredible intimacy in your marriage. Sign up for a time to speak to Belah at www.delightyourmarriage.com/call
transcript
0:02
Welcome to the delight your marriage podcast. This show where you hear from amazing and inspiring wives sharing their struggles, triumphs, and advice for this journey called marriage. Here’s your host belah rose.
0:20
Hey there and welcome. This is belah rose. Oh my goodness. This is such an incredible conversation with a dear woman, Marie wood, I had the opportunity to meet her several years ago and her message her story was so impactful, I think you’re going to be encouraged and inspired by what she’s gone through. And just her life every single day is full of difficulty and yet, and yet, what God has taught her shows her the woman she is today, she has a lot of fun. And we have fun on today’s podcast. Before we dive in, I do want to mention that if you are looking for an incredible marriage, from from difficulty, loneliness, feeling unloved, maybe even in intimacy, I want to invite you to potentially have that transformed, that God can absolutely transform that by God’s grace. That’s what happens through my work with people with coaching either one on one or team coaching or some other programs and options that I do with people. Couples, we’re one on one. And I want to give you that opportunity to speak with me to discuss what’s going on and really get clarity on the challenges you’re having. And if that seems to be the right fit for you. Go ahead to www dot delight your marriage.com/call. That’s a free call with just me just you for 40 minutes, and we’re going to dive into what’s going on in your marriage and how to get to the other side for freedom and peace and playfulness and fear sexiness. already. Let’s dive in with Marie and my conversation. Talk to you soon.
2:19
Okay, oh, welcome to let your marriage listener I’m so grateful that you are here and joining me and welcome Marie. I’m so happy you’re here. Glad to be here. Yeah, I think this is gonna be an awesome, awesome interview. Marie, you know, since we met, I was trying to count it up. I think it was five years ago, maybe four. But it was a while and it was when my son was young. And I just remember hearing your story and being like, oh my gosh, I just want to dive in. And understand, like, there’s so much rich, good stuff that you’ve lived through and live through. And yeah, I just can’t wait to let the audience hear more. So um, yeah, do you mind just kind of starting off and introducing a little bit about yourself, your family?
3:08
Um, so I’m Marie wood, and I’m married to David Wood. We’ve been married for about 17 years. And we have five boys. I forgot to mention that. But we had another child since I saw you know, we our basketball team is complete. Yeah. And so and two of our boys have a rare congenital myopathy. It’s a life threatening illness. And so I co founded a nonprofit and I serve as the vice president of a nonprofit that serves the families affected by this condition. And, and I’m also the director of David’s ministry. He’s a professional apologist. And so I work with him as well. Although technically, I guess you could say say I’m a stay at home mom. Very busy. Yeah, it sounds like it.
4:07
Sounds like you’re wearing a lot of different hats. Yeah, yeah, definitely. Amazing. Oh, my goodness. Can you describe a little bit more about what it means to have this rare condition that you talked about?
4:21
So it’s called myotubular. My apathy and it only affects about one in 50,000 Live male births. Wow. Yeah. So it’s, it’s actually considered ultra rare within the rare disease community. And so, Reed is he’s 11 years old. And when he was born, he wasn’t breathing on his out. He wasn’t moving very low. Floors. He basically looked like a rag doll. You know, he was beautiful and pink. but just other than that, he just didn’t seem like he had any other signs of life. And you know that he had to be revived right away. And it took a while to get the diagnosis, because again, it’s ultra rare. And when we did get the diagnosis, they told us that children with this condition usually don’t live past the first year or the second year, you know, pretty much all of them die. And so they kind of the medical team was sort of pushing what they call comfort care, and which is sort of coded language for, you know, let’s just make him comfortable and give them some morphine. And when you do that, to a child who has respiratory really compromised, it’s kind of like, helping them to cry less painfully. Um, and I told them, Well, you know, you’re saying that he won’t see a second birthday, but I don’t hear God saying that. And we’re just going to do everything we can to make his life as joyful and meaningful and full of love as possible. Well, and, and then, you know, we weren’t planning to have any more kids after that. But I did get pregnant again, with Yeah. And at that time, we had done genetic testing. So we knew that I carried the mutation and that it’s an excellent disorder, meaning that if I have a daughter, she has a 50% chance of carrying the disease as I do. And if I have a son, he has a 50% chance of having the disease. When I spoke to the geneticist while I was pregnant with Paley, she asked me, you know, if we wanted to do an amnio so that we could keep our options open, and I said, Well, we don’t need to worry about any other options. Because my son has a 50% chance of having this condition, but he has a 100% chance of being loved. And so and he’s Yeah, and, and so Paley just turned nine.
7:08
Oh my gosh. 11 and nine,
7:13
yeah, so it’s incredible. We’re really proud of them. You know, they’re, they’re happy, sweet boys very affectionate. They just they make our lives beautiful.
7:27
Wow. And what is them? You know, so what are some of their limitations then at this point? Well, so
7:35
they’re completely dependent on medical technology to survive. They’re both trait so they both have tracheostomy tubes. They both have ventilators, they’re pretty much rented 24/7. And they need wheelchairs for ambulance, you know, to walk and or to get around and they need feeding pumps. They have gastrostomy tubes, because they can’t swallow. So basically, the disease affects every muscle in the body. So yeah, even blinking, you know, my God, on their own. Um, yeah. So I’m dry eyes. This has become an issue lately. And it’s, you know, read just have to have surgery for that and read said, for surgeries in the past year. Oh, my gosh, yeah. And probably the, the hardest thing is that, you know, I’ve had to do CPR on my own kids, and oh, my goodness. And so that’s probably one of the most traumatic things that we’ve had to deal with. You know, just finding a blue baby and having to overcome that initial shock and, and pain and worry and, and work through that and, and do what you have to do to bring them back and save them. You know, with God’s grace helping because I don’t know how I would have been able to do that. You know, oh, my gosh, yeah. Wow. And
9:10
are they some of your older children or
9:14
so our our oldest son is Lucian. He’s, he just turned 16. And then we have Blaise, he’s 14, and then read 11, Paley nine and they read and Paley have a condition and then there’s Kepler, who’s a baby? Oh, and a half? Yeah.
9:31
Oh my gosh. Wow. So, um, so really, there’s not potential for them to have more autonomy than what they have right now.
9:43
Um, well, what’s kind of exciting is that there is a lot of research being done into their condition. There’s currently a clinical trial. They about want to say eight years ago, they found there was a veterinarian. In Canada, who discovered a Labrador Retriever who had the same condition. And that Labrador Retriever led to the creation of a colony of dogs that have myotubular myopathy, and some of them are healthy, and some of them are carriers. And so through research with the dogs, and some of the families have adopted the dogs to after they’ve, you know, participated in the in the research, they’ve been able to cure the disease in dogs. Oh, my gosh, yeah. Through gene replacement therapy. Yeah, which is very new technology cutting edge. So it’s kind of exciting. And there’s, there’s other, there are other things being studied as well. And there’s a company in Europe that studying replacing the protein that the DNA codes for, you know, the, the mutated DNA codes for a protein. And so they’re looking at modulating the proteins. And so there’s, it’s amazing, really, because it’s such a rare disease. And rare diseases are also called orphan diseases. And they’re called orphans, because nobody really wants to adopt them, because they’re not seen as lucrative. Right? And yet, you have all this amazing intellect and technology and resources being poured into this one condition. Wow, yeah, it’s sort of mind blowing. And, and I really enjoy the work that I do, and uniting that community, with the families and the professionals, the researchers and that type, and just, I just love that aspect of, of what I do for the community. Yeah,
11:49
that’s incredible. That’s incredible. I, you know, it’s such a gorgeous way of suffering, and seeing how you can,
11:59
right give
12:02
to, you know, help people that are
12:04
also suffering, right, to kind of find the redemption in the midst of all that. What we’re dealing with, I think that, um, you know, finding kind of meaning and purpose. And in the struggle, and there’s always that idea in the back of my mind as I’m working through some huge challenge, or fight or battle with insurance, or whatever it is. And I’m thinking, Okay, let me remember this, this and this so that I can share that with the community and help somebody else who might have to face this battle coming up. And and it’s very mutual on it’s a very, it is a very powerful, beautiful thing. Wow,
12:49
wow. When did you start this organization?
12:53
So we just had our 10th biennial family conference? Yeah. Whoa, it gradually halation Yeah, yeah. It’s it’s 10 years of kind of connecting the community. And wow, really formalized the nonprofit until probably about halfway through. But we were raising funds under another nonprofit that existed but yeah, but the work has been going on for about 10 years, this Wow. Conference and uniting the community and providing resources.
13:29
So one year in is when you decided you were going to help others. Yeah. That’s incredible. First question to two questions. His first question is Where can people find out more about your nonprofit? Maybe online? What’s the website? They can donate? You know, it’s
13:49
a MTM. Yeah. cnn.org. So MTM is the shortcut of saying myotubular My apathy and CNM is the shortcut shortcut for saying centronuclear mathy, which is a related kind of umbrella of which MTM is a part of? So okay,
14:08
I’ll have that also on the show notes for people to Yeah, easily give to like this is this is a huge and wonderful, valuable service. And it’s incredible. So the next thing I wanted to ask is, I think there are a lot of people that are going through their their work in their life and their marriage and they don’t have a ton of purpose in their life. They don’t kind of wake up with. I’m going to do God’s work again today. Like this is the stuff I’m supposed to be doing. This is going to matter in eternity. You know, how did you really discern what that was supposed to be for your life?
14:52
Um, do you mean surfing? Or do you mean like just the day to day life type thing?
15:00
Yeah, I mean, when I look at what you just described, and we haven’t even gotten into so much of the other stuff, I can’t wait to talk. It’s coming guys just away. Um, but I’m just thinking about this, you’re connecting people, you’re helping parents, you’re helping those have hope and connection community. Right? That’s a definite God given calling, like, how did you decide that this is something you wanted to spend hours and hours on?
15:29
You know, it’s weird, I, it, it just sort of happened organically. That’s all I can say, I just, I just seem to fall into that position. I, it just seemed to flow out of whatever I was doing, and just how I was living. You know, I guess you could say, people are drawn to me at times. And so I, yeah, I guess it’s just how I live my life, I just have a lot of joy in the middle of everything. And I guess that has attracted people. Um, and then I just work I just like, to serve. And, and I feel like, that’s what I love about the people I work with on our team, our leadership team is that we’re all really about serving. And, um, you know, we just want to help others. And we just appreciate, I guess, those who’ve kind of lent out a helping hands or encouraging word, neuron journey, and it just feels like when you’re, when you have gratitude for something like that, it flows back out of you. And, and so I guess that’s just how it happened. And, you know, at one time, there were a lot of people working on this project, and they sort of kind of drifted off. And I guess the ones who are left who are just really committed to making that time and willing to kind of do hard work and in addition to living life,
17:10
yeah, absolutely.
17:13
Yeah. So yeah,
17:17
your whole life is hard work. It’s incredible. How and again, we’re, I feel like, this is probably going to be the first half of our interview, and then we’ll kind of go into the other fascinating part of your life, but how has your marriage been in this regard, like with your sons, in terms of support in terms of what that’s been like?
17:43
Well, um, in the beginning, it was hard for David to kind of deal with everything that was happening to read. So read is the child who’s a little older, with the condition. And, um, you know, changing a trach on a baby is kind of scary. It’s sort of intimidating, especially if you don’t have any medical background or nursing experience or anything like that. Um, interestingly, as a child, I used to volunteer for Operation Smile. Oh, I used to, you know, spend a lot of time in the hospital because my mom was a nurse. And I would go and see little kids and patients, and I used to do volunteer work, where I would go to children’s hospitals and nursing homes and yeah, and stuff. But the use of that size I was, I guess, I was already primed to be more comfortable with it than David. And so for him, it was very intimidating. It was scary. And you’re thinking, you know, my child’s life is in my hands right now. And, and for him, that kind of pressure, it was something that he just really didn’t know how to cope with at first. And I remember the first two years after Reed was born were probably the hardest for me, in terms of not feeling that he was as involved in that. And, I mean, the good news was that, um, you know, when Reed was born, and Reed came home from the hospital, and he was about nine months, um, so prior to that, he was just, you know, they’re trying to stabilize him. And when he came home, I remember David saying to me, I’ll do anything with Luke and Blaise please don’t ask me to do any of the medical stuff with Reid because I’m I just can’t deal with it. And it wasn’t that he didn’t, you know, love him, he would hold him and he would test them and hug him and you know, talk to him but he was just totally scared about you know, one of the things we have to Do we have to suction a trach. So, you know, you build up secretions in your mouth and your airway throughout the day. And if you don’t have the strength to swallow, you can’t get rid of it. Or if you don’t have the strength to cough, you can’t clear your own airway. So what we have to do is we have to suction, and it’s putting a tube through the trach and suctioning out the secretions. And, you know, I think when people aren’t expecting it, they’re sort of like, either grossed out or scared, or whatever. For David, he was more scared, you know, I’m not going to do it right, or I’m going to hurt him when I do that. And so that type of thing, stressed him out. And I remember, I’m really wondering, at some point, if we were going to make it because I was really feeling like I was in it alone. Yeah, I reached out to a really close friend and asked her to pray. And I said, I just, you know, he’s just putting everything on me. And I said, I just, I don’t, I can’t take this, you know. And the very next day, he said to me, you know, you really, he said, You’re just doing everything on your own, I want you to show me how to do everything. And I want you to go visit your best friend who was stationed in Hawaii, the girl I grew up with, and had just like, come to see me in New York. And he’s like, you know, let’s try to find a plane ticket and have a time for you to go and spend a week with her. And I’ll invite I’ll tell my mom to come and stay with me and help me with Reed and the boys. And it was just like a huge shift. And it was the day after I just reached out to this friend, I was like, please just pray because I, I really can’t take his lack of consideration for my needs anymore. Wow, huge. And I felt so thankful that he did that I’m so like, kind of a little choked up remembering that and just God’s faithfulness to really move him in that way and that he was receptive to it. You know, and, and it was he he has really stepped up to the plate in so many ways.
22:16
Now, what was interesting was when Paley was born, I think that also threw him again, kind of in another way. Yeah, he was sort of taking on the world at that point, you know, he had really gotten more involved in his work with, you know, evangelizing Muslims, even counter Jihad work. And, you know, it felt like he was so caught up and all that he just wasn’t really there for me, while Paley was in the hospital, and, and I felt it was even less so than when Reed was a baby. So I, I was confused. And I didn’t really understand what’s happening. And I felt that he was withdrawing. I felt like he was rejecting us. And it finally came to a head one day where I I said to him, You know what? I said, you’re, you’re not coming to the hospital with me, you’re not holding Paley. I was like, do you not love us? Do you not want to be with us? And I’m trying to cry. But he, he said, Well, I just feel like, you’re so good at everything. And you’re such an awesome mom, and you know what to do? And he goes, and I don’t and he goes and I feel like Islam, I can I can take that on our friends over here I can I can help them with their troubled marriage or whatever it is, I can help these people. And I can help them. He’s like, but I can’t do anything for reader, Haley. I can’t, I can’t fix the problem. And that was like a huge eye opener for me. Because I was like, Oh, this is what you’ve been worrying about. And I said, I said, I don’t need you to do that. I don’t need you to fix it. I don’t need you to make it. Okay. I said, I just want to know you have my back. Because when you’re with me, when you’re when you’re beside me, I feel stronger. And that’s all you have to do. And the irony is that saying that to him, gave him it almost like liberated him from this burden he was putting in putting on himself and gave him freedom to actually become really good at all the medical Cares all of a sudden, to the point where he’s probably one of the best people at clearing out their lungs when they’re sick and right. He’s better than all the nurses and sometimes I feel like he’s better than me now. And you know, but it was kind of giving him that okay, you know, and
24:57
I want to just I want to just mention help how powerful that is and how I think I mean, your story is just incredible. And one thing that you mentioned is, I don’t need you to fix it. I just need you to be beside me, I want you to know, I want to know that you have my back. I feel like that’s such a huge thing for a wife to feel that the husband is beside her. Yeah, with her in it. Yeah. And like you said, it’s not that he needs to fix it. He just needs to be with her in it. Yeah. You know, so often husbands listen to this show. So I just want to mention, you know, your wife needs you to listen and be with her much more than she needs you to fix the situation, whether it’s health related finances, you know, whatever the big giant monster is in your life. She needs you to know that she’s not alone. That’s what it really
25:50
we’re in this together. And that, you know,
25:53
yes, yes, exactly. And then, and then look at their results is ultimately he feels empowered to do what Yeah,
26:01
yeah, that was what was so amazing. Yeah.
26:05
That’s so powerful.
26:06
I mean, that was a huge, that was like a huge shift in our relationship where it it just kind of opened my eyes to a way that I had been misunderstanding, kind of how he is, and probably just differences in the way that men and women think in general. Yeah, definitely. Yeah. And then, probably another huge, really powerful moment, with this whole journey, and with our relationship would be, um, the time in 2015. Paley was five and he had a, he almost died. Well, he did, he died, he, um, I found him. I had put him to his bed a little early. I was playing with his brothers and David, were just probably watching. I think we’re just watching funny YouTube videos in the next room. And it was probably about half an hour. And David said, Hey, shouldn’t you go check on Paley? And I said, Oh, yeah, he’s, he’s fine. You know, he’s got the alarms, they’ll go off if anything happens, but I started walking over to his room just because I was like, yet still good to check on him. And when I got to his doorway, I saw that his pulse oximeter, which gives his heart rate and his oxygen level came up as 00. And I felt like I had been like, kicked in the stomach, I felt like I was gonna vomit and pass out. But I just rushed over to his side. And he was completely gray. Oh, my gosh, like bubbles, the head, like come out of his mouth, and he was gone. And I screamed, you know, David, called 911, I pulled him out of the bed, I put him on the ground. And I started doing CPR. I didn’t have an Ambu bag. So usually attach the Ambu bag to the trach. But I just started breathing directly into his tracheostomy tube and doing chest, chest compressions. And as I was doing this, I was I was praying, almost like bargaining with God. And I was like, Please, Lord, you know, don’t let this happen. You know, how can I serve you if he’s gone? And you know, and I’ll just be so devastated. And I’ll be so broken, I’ll never be of use to you again. And as I was thinking these things, I felt like God was speaking back to me he was he was saying, you know, I’ll be with you. I’ll see you through it. And you’ll come out even stronger, I can expand your ministry through this and all of those things. And I finally said something what, I don’t want that. I want him to be okay, I want him to be alive. And, um, but as I was doing the CPR, I remember kind of getting to this place of, of peace where I was saying, Okay, Lord, if you’re going to take him, then then you’re going to take him. And I said, but I’ve just got to keep trying. And I said, so this is my request. I said, when you tell me now I’ll accept it. And I said, but it’s got to be somebody else who tells me now because I’m just going to keep trying and asking for yes. And at that moment, when I when I thought that prayer, I felt almost like this, like this bubble of air come up in my throat. And I was like, Oh, I have to breathe into his trach right now. And as I breathed in, I had this powerful sensation that life just went into him. Oh, my gosh. I said, Well, I just life went into him. And I started doing the chest compressions. Well, I even felt like now I have to press now I have to press and I was doing the chest compressions. And his heart rate started sustaining after that. Yeah. And by that time, the EMTs had gotten there. And um, they were kind of amazed that I had revived and they said, one of them said, I’ve I’ve been doing this for 15 years and I’ve never come to a house where there’s been a car Yeah, caressed, and a family member has revived the patient with CPR. Wow. Yeah. And what was crazy. After all this, I still felt so riddled with guilt that I allowed it to happen in my mind that this was my fault. I should have been watching him work closely. And I went with him to the hospital stabilized him. I came home the next morning just to take a shower and grab some things. And I was going to go back to the hospital. And David saw me and I was, you know, I would be talking in tears would be spilling over, because I hadn’t fully cried. So it was just kind of like squeezed out like, Yeah, and again, and
30:41
he said, Okay, we’re gonna go in the bedroom, we’re gonna lay down on the bed, and I’m gonna hold you, and you’re gonna cry, and you’re gonna cry until you’re done crying. And then, then you’ll be done. And then you can go back to the hospital. And I was like, Okay, and so we went into the room. And he’s holding me. And I just start saying everything that I feel, and I’m like, How can you even love me? This is my fault. I should have been watching him more closely. How can you even stand to be around me right now? How can you even stand to look at me, I’m such a failure. I’m such a terrible mother. And he was, and he just helped me. He didn’t even try to like reason with me. He was just holding me and letting me cry and say all this ridiculous stuff. But what was funny was when I said it, as soon as it came out of my mouth, in my mind, I was believing it. But as soon as it came out of my mouth, it was as if it didn’t ring true. And that by speaking it out, I realized how false it was. Yeah. And um, but he was just holding me through this. And until I probably cried for an hour, just like shrieking and condemning myself. And he’s just holding me. And I always say, like, at that moment, probably more than any other time. Like, it just was such a huge realization of how he was Grace to me in that moment, David was really grace to me. And in being that way. He really, it was as if I could feel the love and the grace of God beyond him that was coming through him in that moment. And yeah, I still get choked up remembering it, because it was really powerful. I you know, he could love me through that.
32:39
Wow. Yeah. That’s incredible. Yeah. That’s, that’s really, really incredible. And so many reasons, so many levels. Some of the listeners know they might have heard my story of my brother, where he died, had a cardiac arrest for 13 minutes. April, and he was revived. Wow. Oh, it’s amazing. It’s incredible. Yeah. It’s a god. dead to life story very similar to what you’ve just described. Wow. Yeah. It’s absolutely incredible. And like, just to hear like, God, God can absolutely raise the dead. Did this in he does that. And that’s really powerful. It’s really, really incredible. And I love one thing that you said, how our husband, how our spouse can simply listen to us and just allow it to be a safe place for you. And then once you articulate it out, it starts to lose its power that yeah, he can’t lie to you in the darkness anymore. It’s in the light. Like, oh, that’s not true. Yeah. And like you said, David didn’t have to say anything. He just hold you.
33:57
Yeah, it happened. Probably if he had tried to reason with me. I would just argue back but I am really horrible.
34:09
Exactly. But how powerful it was. I mean, you needed that so desperately in this situation. It’s just incredible. Wow, okay. I am thoroughly, thoroughly messed up. This is
34:25
a tissue disclaimer.
34:27
i Yeah, really. That’s a very important thing. I’ll see if I can warn everyone in the beginning.
34:42
Amazing, she is truly truly amazing. I hope that there has been nuggets from this call that you have just taken hold of and it’ll inspire you encourage you and really allow her and the way she thinks about marriage and her life and her relationship with Jesus and her love for people. Just let that be a role model you know, as you’re doing your life and just come to mind this incredible woman that you just heard. Yeah, I’m, I’m just so inspired and encouraged. Next week, you are going to be thrilled to hear the next part because it just gets better in terms of the impact and incredible nature of her story. So, I look forward to chatting with you more soon or on a personal one on one call with me delight your marriage.com/call so that, yeah, you can have an incredible marriage and praise God through through that as well and grow in that area. And yeah, do all that He wants you to do in this world, and enjoy it. Alright, I’m gonna let you go and I will talk to you next week. God bless. Bye.
36:03
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