Today’s guest, Madeline Cheney, is from The Rare Life Podcast. She shares her journey with her son who has a rare disorder, her struggles with guilt, and how finding community gave her confidence to reach out to others.
July 5, 2022: Ep. #93
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Episode Links & Resources:
If you enjoyed our podcast, please...
Today’s guest, Madeline Cheney, is from The Rare Life Podcast. She shares her journey with her son who has a rare disorder, her struggles with guilt, and how finding community gave her confidence to reach out to others.
July 5, 2022: Ep. #93
Timestamps & Key Topics:
Episode Links & Resources:
If you enjoyed our podcast, please...
Sara Clime 0:00
Hi and welcome to Take Heart. Our mission here is to offer encouragement, give hope and insight so you can flourish in your journey as a special needs mom. We have free resources for caregivers and we'd love to share them with you. You can find them on our website at www.takeheartspecialmoms.com/resources. We are so glad you're here.
Hi, it's Sara and I am with a very special guest Madeline Chaney. Madeline is a mom to two amazing kiddos Wendy, a six-year-old who claims she is "Daughter Nature" vs. Mother Nature, which is seriously the cutest thing ever. And a four-year-old boy, Kimball, who has disabilities caused by a rare disorder. Madeline created the Rare Life Podcast two years ago, as a safe space for parents of children with disabilities to feel seen and to know that they're not alone. She lives in Utah with her husband and children. Please help me welcome Madeline. Thank you so much, Madeline, for being here. It is a pleasure.
Madeline Cheney 2:04
Thank you so much for having me. I'm so honored to be here.
Sara Clime 2:08
Yeah, well, I love your podcast, so this is just, this is a pleasure for me. My son also has what's considered a rare disorder. I was really excited whenever I got the opportunity to have this conversation with you because I know a lot of our listeners have...their children have some rare disorders. It's just a different type of parenting completely. Before we get started, and before we jump in, let's just spend a little time. I would love for you to spend a few minutes telling us about yourself, your family, and your special needs journey.
Madeline Cheney 2:44
Yeah, I am earlier on in this journey, but it became a really huge part of it to create The Rare Life Podcast. I'm sure you've experienced this too, but it has totally changed my experience with my son because of being able to rub shoulders with some really amazing parents in a way that I normally wouldn't be able to by interviewing them. That's been really, really awesome. I feel like my perspective is so much wider and deeper because of that. I spend so much of my time working on the podcast, so that's really taken over any extra time I have. As a family, we love to go outside and we love to go hiking with our "Daughter Nature, and we go camping.
Sara Clime 3:34
I love that. Why did she consider herself "Daughter Nature" I have to ask.
Madeline Cheney 3:42
She is just like, she's a wild child. She says, "Mom, we shouldn't be in houses. This is not how we were meant to be." I'm like, but Wendy, what about air conditioning? She was like, "I just don't like things like electricity or batteries because they're just so far from nature." She thinks she's gonna live on a mountaintop by herself when she's like really old, like 11 or something. We said, "But, Wendy, what are you gonna do for food." She said, "I'm just gonna live with what the earth has to give me. She's so funny. Yeah, she just is her daughter nature.
Sara Clime 4:22
So you have your hands full. She's wonderful. I love it. What is your son's diagnosis?
Madeline Cheney 4:30
There are only 125 people worldwide that are known to have it, so it's super rare, but I'll give you the big long name. It's called Chondrodysplasia Punctata, x-linked type one. It's a type of skeletal dysplasia. That affects him in a lot of different ways. more intensely when he was younger. Now that he's almost four, health-wise is doing great. He's been able to graduate from a lot of his specialists Although he is hard of hearing and he wears hearing aids, that's something that'll be around forever. Then he's visually impaired. So he also has, it's a form of dwarfism. He's a little guy. So those are things that'll be with him for his whole life. But yeah, he's so cute. We love him.
Sara Clime 5:22
I know, you've done some episodes on your podcast in the past, surrounding your son's diagnosis and how you felt responsible for it since you're a carrier. My son's specific diagnosis is called Duchenne Muscular Dystrophy, and it is genetic passed through the mother. Specifically, we found out almost a year into our journey, that I was not a carrier, which was rare of the rare. But I remember feeling that confusion around being the carrier of that. Knowing that and walking beside some friends that I know are carriers that their sons do have Duchenne as well. They are carriers. They have multiple children, multiple sons with Duchenne, and the layer of guilt and complexity of emotions that adds to their journey. If you could spend some time with that because I know we had an episode not too long ago that we talked about the guilt, and I did speak to that as well. Because like I said, eventually it was found out that I'm not a carrier, which was kind of a shock. I carried that for a while, and I remember feeling so confused by it, knowing that it wasn't my fault. But still the emotions it's just very hard to explain. So I'm kind of hoping maybe you can put words to it. You did such a wonderful job in your episode.
Madeline Cheney 7:02
Oh, thank you. Yeah, it's so complicated. There are several things like we thought our son had Down Syndrome right at first. I feel you. We found out later he didn't have Down Syndrome, but I still feel a special connection to the Down Syndrome world because of that. I get what you're saying. You have like a special insight into what, you know, that's. Oh, it's so complicated. I was really blindsided by it because. For some reason, with Kimball's condition, it's kind of like a 50/50. Either it happened just sporadically and started with him, or other times, like, in our case, the mother passes it down, unknowingly. I was just so blindsided. I was like, there's no way I caused it. No one else had any symptoms like this in my family. I just didn't expect it. Finding out that I was a carrier added a level of pain to an already really painful situation. In that first year after he was born, and watching him really struggle to breathe and in and out of the hospital, not growing at a great rate and just a lot of things like that. Once I found out that I had passed that on to him. I felt, oh, I did this to my son. It was something that people tried to talk me out of. Well, it's not your fault. You didn't do it. You didn't choose to and I thought, but my body did that to him. It was something that I was not able to logic away from because it was just how I felt. This just feels like truth. I did this to my son. That took a long time. Since I recorded the episode you're talking about it's been about almost two years. Since then I feel like I've come to a much healthier place. I had to come to that place. No one could tell me, it's not your fault, and I would say, "Oh, you're right. Okay, I'm fine." I felt so deeply that I had done this to my son. I felt like my body had betrayed both of us by doing this. How could my body have done this to him and to me? This is causing so much heartache and to watch him struggle and suffer. But I think that when...It was very redemptive and within all that darkness at that time, I've kind of allowed that to grow and grow and now I feel a lot healthier with all of it. Oh, it's my fault that Kimble has this condition but also, it's my body's "fault" that Kimball exists. He's here. I created him. I think that at first, I felt that Oh, well, but I created Kimble, and I let that kind of grow and grow and I feel like that's outshined the darkness that I thought first responsible for how he was suffering. But I'm also responsible for all the joy he brings. He's such a special kid. He really has such a gentle soul, and he's so caring and loving. To see, I created that. That's awesome. I think it's so complicated. That's how that's kind of evolved.
Sara Clime 10:23
I think like you said people want to help and say, "You're not at fault." They mean, well, and they're right. It's not our fault. It's not the mom's fault, even if they are a carrier. I think we have a lot of grandparents, and we have some ministry leaders that listen to this podcast. I think one of the big takeaways from this is, and this is why I wanted to bring this up. Thank you for humoring me on this, because I know it's a very difficult conversation. I think one of the big takeaways from this is that is not to try to lead someone out of that space is just to kind of sit in that space with them and just love them through it. Eventually, you're going to see all the wonderful things because I can't imagine a life without my son in it. There's just something he brings to this world that no other person could bring to it. :ike you said, "I did that." I have friends that are carriers of Duchenne and their son's are phenomenal human beings. You did that. I love how you said that. It's a very complex emotion. I think that there are times when even the parents and the moms don't even realize that they have those feelings. You have tried to push those down because you don't even want to deal with it. I know, for a while, I didn't even want to deal with those feelings. Thank you for talking about that, because that is a very, very difficult conversation to have. One of the things that we love here at Take Heart is to talk about community, because in the special needs world, and when you have children with disabilities, it is difficult to find community. That is one of the things that we hold dear is that you can find community with others. I know that that's one of the things that you hold dear also is just that you have that need for community with other parents. You've done episodes about that as well. What are some of the ways that you build community, within your family, within your friends within the special needs community as a whole?
Madeline Cheney 12:54
Yeah, that's a great question. I feel like that's something that the sooner a newly diagnosed parent, a new parent can figure out the better because I think there's definitely a time that we all grapple with that. How do I connect with my friends and family that don't get at all what I'm going through? How do I find this? There must be other parents out there doing this. Where are they? How do I find them? I feel like the sooner you can get there, the better. I think it was like a year and a half before I really even met other parents who have children with disabilities. That was a very lonely time. Similar to the "carrier" topic, it added another layer of pain to an already really hard situation to feel like, Oh, this is really hard, but also, I'm alone. I think it was a really big first step for me in both connecting (overall connecting with anyone) was finding other parents who got it. When I was able to find that community, (and for me, it was on Instagram) that's where I found people talking about this. I thought here they are, here are the parents that are sharing about their child, and oh, here they're going to appointments. They know my life. It was just so cool. Once I found that community, I feel like I was more able to open up and find deeper connections with my family and friends that are not in that situation. I'm trying to think about how to describe it. Once I was able to find my people; they get it. I'm not the only one. It was easier to feel confident with my friends and family that weren't in that community. I can be with you, and I can love you and connect with you because I have this confidence built up from being a part of this other community that I love. I'm not the only one doing this. I think in some ways, it's because I didn't necessarily need that validation anymore from my friends and family that didn't get it. It wasn't as big of a deal because I was getting it from these other people. So, I can connect with my friends and family over things we do have in common. I think there was also this realization of I don't own the corner on hard. Their lives are hard too, it's just different things that I don't understand. Being able to connect on a broader sense of this is what I'm going through. It sucks, oh, man, that's hard. Let me tell you what I'm going through that sucks. We can connect over the "suck", and that sounds really negative, but it's been really cool. I feel like that really helped me.
Sara Clime 15:36
Yeah, and that's great. And I love that you said you don't own the corner on hard. That is so true. I think one of the great things about finding community. I think we just live in such an exciting time where we can find that online because that's where we find it. When you find that online, and you do find that community, you don't expect your family to be everything. They can't be everything to you. Your friends are not going to understand what you're going through. If you try to force that, it will distance that relationship. I don't know about you, but one of the things that I have found over the years, and I know that I've been doing this for a few years longer, but one of the things that I have found is a lot of people don't want to talk about their difficulties because they think I know it doesn't compare to what you're going through. It's that comparison, but I found that I will try to do that as well. I will try to compare my hard to other people. I think that's just human nature as we all try to compare it. But as you said, if we just say, "Okay, I am going through a hard time. You're going through a hard time, here's how we can be supportive of each other. Here's how we can sit in that hard space with each other, and none of us own it. I love that phrase. None of us own that corner on hard. We are all going through something difficult and just to be there for each other. That's lovely.
Madeline Cheney 17:13
Yeah, and I feel like it's so important, that vulnerability. I think the things that we struggle with feeling very, very near to our hearts, and a lot of times, we want to guard that because it's scary to open up about those things. I don't know, maybe we think people will judge us and think, oh, that's hard for you, or look what I'm going through, kind of comparison. I feel like the things we struggle with are very personal. It is hard to open up about those things. It was really eye-opening to realize, even just with the podcast, the episodes that we dive into, the really hard ones. We're not sugarcoating things. Those are the ones that are really impactful. I'm sure you've seen that too because we know that we're not alone in the hard. That's really, really important to know that and then to know that other people are struggling with similar things or similar emotions. I think opening up as we feel comfortable, either on social media or being interviewed on a podcast or writing a post about it, or talking about one on one, I think can make it feel safer for other people and can offer connection for the other people who are viewing that or receiving that.
Sara Clime 18:30
Yes, exactly. I think when you first launch into this world, when you first become a parent to a child with disabilities or special needs, you're told you're going to have to fight for everything. You have this image that you're going to have to have it all together. You're going to have to put on your superwoman cape and you are going to have to go full throttle, and vulnerability doesn't seem to be a part of that. At least it wasn't for me, I felt like I needed to be so strong. I think I did a lot of detriment to myself at the very beginning of it. I think once I realized it's okay, I can have that cape on, but sometimes the cape has holes. Sometimes I just need to bring the cape around and just bawl into it and just cry for a while, sit down and cry and just sit in that space with somebody else. I think it's also important to is find community and kind of pick and choose. There are some communities specific to my son's diagnosis that they're not for me. I don't feel like I gain a lot from those communities. Some that I'm probably a part of, probably aren't for other people. I think it's important to try to find what you need. There's so much out there for everybody that does really try to communicate and dive into those spaces with people.
Madeline Cheney 20:01
Yeah, I really feel that's true because there are different types of vibes that you get from different groups: the Facebook group or certain people. It's great to be able to kind of curate your feed. What do I want to consume? What makes me feel good? What makes me spiral, and it's probably not as good. What podcasts are more my style, just things like that? I think you're spot on. That it's so important, to make sure whatever you're consuming is feeding you and not making things harder to an already really hard situation.
Sara Clime 20:32
Right. Well, and I mean, take, for instance. I listened to your podcast. You have a 4-year-old, whose diagnosis is completely different. I have an 18-year-old. They're 14 years apart. We live how many states apart. We would have never met in any other world than this one. I have an almost 22-year-old, who's my oldest, your oldest is six years old. But I feel like I can listen to your podcast and get so much out of it. When you were talking about that, one of being a carrier, and the feelings that go along with it, that really spoke to me, and a lot of them did. I would encourage those who are listening to really step outside of the diagnosis as well. If you are really beginning your journey, and really trying to find your community, definitely start within those diagnoses, but you can find community, like you said, Madelin, there are so many different vibes, and it often does not revolve around the diagnosis it, it revolves around the people that are in it. There are places out there for you, it just will take a little due diligence to get in there and get involved in and engage with people. See what it's about. Try it out. If it doesn't, go to the next one. That's one great thing about social media. It's not like walking into a building, you can just hop around and leave if you don't want to.
Madeline Cheney 22:17
Yeah, in real life, that might be a little sketchy, right? I'm gonna walk away from you now.
Sara Clime 22:24
You were talking about your son earlier. You were talking about the joy? What is one thing about being a parent to a child with disabilities that brings you joy? Sometimes I just feel like we don't, it's really hard to focus on that. What is one of those things that you can say this life has truly brought me joy, and maybe there's not something?
Madeline Cheney 22:53
I feel like it's hard to describe, and I'm sure people listening will be like, yeah. Hopefully, they will understand what I'm trying to say. I feel like there's just this depth to my life that was not there before, layered with joy, layered with unimaginable pain, with fear, with triumph. All of those complex emotions layering on each other, just from our experiences, both the really happy ones, and the really hard ones. I just feel this depth that I didn't have before, I just feel like a different person. It's kind of hard to put my finger on exactly how to describe that. It feels good. It feels so deeply human to have like that almost like a just a deeper pool of water than was there before. I think I feel because of that more resilient. Man, I've gone through some really tough stuff, and I know that I can handle stuff like that. I can handle things that I don't think I can. In the middle of all that I thought, I just can't handle this. I think that feeling is just so powerful when I think of it that way. Then more of a simplistic way, like I have the joy that I've had, because of this. Going back to the connection, I've met the best people and these really deep relationships, and connections. Even if we don't get to know each other super well, just being like, "Ah, she gets it." That I don't know. I don't know if that could have happened any other way. It's very unique, and I treasure that a lot. Beyond that. There's my son, there's his disability, they're all kind of tangled up. He is such an incredible kid, and he has brought me so much joy over his four years of life. I know he'll continue to do that and as any parent knows disability or not like, that's such a special thing. It's so incredible and life-changing for their parents. I guess all those different parts that are positive to me that I am so grateful for. I didn't think I'd be saying that. That's the thing. In the earlier days, I did not think I would ever say there was anything positive about all this. I think giving yourself time and space, and it may be four years, it may be fourteen or four months. I don't know; it just takes different amounts of time and space to get to a point like that. I am confident that we all do get there at some point where we say, " I'm grateful for this, even though it's been so hard."
Sara Clime 25:41
I think it's important to allow ourselves to find joy. My son's diagnosis is degenerative, and it's painful. There are times when I'm like, How can I find the joy in this? Then, I think I'm supposed to find the joy in this, if I don't find the joy in it, how does he stand a chance at finding joy in life. If I become a victim of it, he stands no chance of not becoming a victim of this life. I think as parents, we need to allow ourselves to be able to find joy. We're supposed to find joy. It's okay to find joy. There are times when I really think that my son has this. I don't know, he just has this deeper connection. I think he has a direct pipeline to Jesus. Sometimes I just think that he just has this otherworldly aspect about him. I learn so much from him. I love how you said, there are just a lot of layers, everything is deeper. The emotions are deeper, the pain is deeper, the joy is deeper, and that is so true. And I love that.
Madeline Cheney 26:59
It's incredible, like you say, the direct pipeline, seeing that special part of I don't know. I just feel that another thing that is so incredible is to see the depth in him, too. Obviously, we don't know what they would have been like if they'd been born with healthy bodies and whatever. I don't know, I'm convinced that there is this depth to him that would not have been there and to my daughter. She's been through heck, too. It's been very hard for her as well because her parents just flailing emotionally in the first little bit. That was really hard for her. And so yeah, I just feel like it. Like I mentioned at the beginning where I feel this resilience in myself, but I can see it in my children as well and in my husband, and that's really, really cool,
Sara Clime 27:48
Right. Yeah, I love how you brought up your daughter. My son who's 21, there's a side to him that would not have existed if he had not had the craziness that came with having the parents that received this diagnosis when he was 12. There's empathy to him. There's just this part of his personality. Maybe he would have been like that, but I don't I don't believe so. I believe that they teach me much more than I've ever taught them., and maybe that's why God put them here. Sara needed a little extra. I had one last question. I love this question. If you could go back and give yourself any advice at the beginning of this whole journey, what would you tell yourself?
Madeline Cheney 28:44
I think I would tell myself, that I would be happy. I know that sounds bad, but I really didn't believe it. I thought our life is over. This is terrible when we were in and out of the hospital all the time and just struggling. Because he was working so hard, just to be alive, and everything was really hard for him too, I just didn't see a lot of joining him either. What's even the point of this? I'm not happy. He's not happy. Our daughter was struggling so much. She was having such a hard time. I think if I would have had any idea of how normal our lives would feel, just a couple of years later, or even a year later, how much better things have gotten. You will find joy, and life does get better. You will adjust. You are strong enough for this. I wish that in that too. I could bring myself a little video of Kimball hopping around and playing the ukulele and being super cute and adorable and happy. Look how happy he is, and look how happy you are. I think that would have been such a game-changer because that would have helped me see the light at the end of the tunnel. There is a light at the end of the tunnel, and I'm just gonna keep chugging along till I get to that point where I feel adjusted and things are just a little bit easier. That would have been so amazing to be able to go back and do that.
Sara Clime 30:15
I love that that's huge. That actually made me tear up. I think that is a great takeaway for our listeners is that happiness is possible. Thank you for that reminder, I think that that's going to be a blessing for a lot of people just to hear that. I think even a decade into it, I even need that reminder every once in a while. It can get hard, it doesn't stop being hard, but if you constantly remember that. I have a picture of cute little Kimball jumping around with his little ukulele. So I'm going to be picturing that.
Madeline Cheney 30:57
We're giving him an accordion for his birthday. He kee's asking for an accordion. He's just the cutest thing. He's the cutest musician.
Sara Clime 31:11
Where can our listeners find you these days? We're gonna also have the links to these in our show notes, so be sure to check those out. But where can they find you?
Madeline Cheney 31:18
Yeah, so I'm pretty active on Instagram. My handle is @the_rare_life, which is the name of my podcast. I release weekly episodes. Those are on Spotify and podcasting apps, and on Facebook @rarelifepodcasts.
Sara Clime 31:42
Great, and makes sure to go and check her out. It's definitely a game-changer. I really feel that what you're putting out there is a blessing to so many. I personally just want to thank you for what you're doing. It has been so good to see that. I think that it's going to change lives. Thank you so much for doing that, and thank you so much for being here. It is been a pleasure.
Madeline Cheney 32:10
Thank you so much. Such an honor.
Sara Clime 32:30
Thanks for joining us this week on Take Heart. Our prayer each week is for your heart to be encouraged. We are grateful you're walking on this journey with us. If you have any questions or comments follow the links in our show notes. We love hearing from our listeners.